View Full Version : Cymbalta Withdrawal ... about to lose MY MIND!!!
bluebirdy
12-21-2007, 06:36 PM
I recently "titrated" off of Cymbalta and I am about to lose my mind - from both the physical and emotional side effects. I've never had a problem like this going off of any med.
I'm FURIOUS at the idiot NP who originally put me on this stuff.
I'm FURIOUS at my pain doctor (and every other instance of every doctor) who has played dumb, or been a total idiot, and declared that an Rx has no side effects. And in this case, that he knew of NO PROBLEMS going off of Cymbalta. I know he doesn't live in a box ... can he not even use GOOGLE :mad:
I'm FURIOUS because I called the pharmaceutical company and thought they might actually be of some help. What an idiot I was. They basically would only quote from Cymbalta.com and refer me to my ... DOCTOR.
I'm FURIOUS that it's ALWAYS left up to us, the chronic pain patients, to research and dx our problems, to research the meds because Lord knows the doctors know NOTHING. NOTHING. NOTHING about the side effects when they put us on these meds.
I'm FURIOUS because the IPS on this drug, and the real-life-human-stories don't begin to match up.
I'm FURIOUS because doctors don't return phone calls, even when they are rare.
I'm FURIOUS because my doctor did not give me a titrate schedule, the pharmacist says she can't give me a titrate schedule - that it must come from my ... DOCTOR, and the pharm company won't give out a titrate schedule - says that it must come from my DOCTOR. Who didn't give me one! BEcause he knows of no problems coming off of Cymbalta!
:mad: :eek: :( :confused: :rolleyes: :mad: :mad: :eek: :rolleyes:
bluebirdy ... losing my mind fast
ejskennedy
12-21-2007, 07:22 PM
I'm so sorry bluebirdy. You're going through a terrible time. I was on cymbalta for over a year and took myself off of it by breaking the caps and eyeing the amount then dividing by eighths. Then down 1/8 for a week at a time. The med wasn't helping me, but my doc also said no prob going off. I have a really hard time with meds, though, so I thought it best to take it slow. I still didn't feel great at the end. I think my problems lasted for a month or more, but I don't regret the time. I had gained a lot of weight while on it (that isn't supposed to happen either :), and it just came right off (or most of it) in a few months. With all the new meds out there, the docs really don't know about withdrawals and side effects. The best thing is to find a doc that doesn't think s/he knows everything, and acknowledges that a few people will react far out of the box.
Its good to get angry! But its better to get even by getting a smarter doc!
God bless and I hope your able to feel better soon.
Erin
p.s. I've found on my many withdrawals that upping my vitamin/mineral intake helped greatly as well as lowering my expectations for what I would be able to do/handle for that time. My heart goes out to you.
Gimpy
12-21-2007, 07:54 PM
WOW Blue!
I am a firm believer that the pharmacutical companies and reps know about these w/d problems from some of the newer AD and they play ignorant HOPING to hook you for life because it's just to horrible to stop the drugs.
I recently had to go on one, and I told the dr. Effexor was great but the w/d's were horrible and I wouldn't take another one like that and I know they know which ones do it. She said some have multiple drugs in them and they are the ones that cause the problems. She started me on Lexapro and told me it would be for 6 months, or longer if I felt like I needed and it might even help with the pain. Right now I'm as happy and crazy as I can be and have been in a very long time. I hope when the time comes that I don't experience what you're going through.
The first time I took the Effexor I did research before going to the dr. Not just the pharm site but online bloggers and all the bloggers complained about the hidden w/d symtpoms the company was keeping under wraps. 3 months later I went back to get off of it and I told the dr. the problems I was having and he looked at me and said "oh yeah, I hear that's a problem!" I could have came off the table and strangled him. I questioned him why he didn't this when I specifically asked him about her just a short time later. No answer, just the look like what do you want me to do? I no longer see him.
You may have to take something else while titrating down on this one. Maybe you should go back on it until after the holidays so you can enjoy the next week then deal with the w/d symptoms. Maybe some valium or something to ease the symptoms. Do you feel like your brain is disconnected from the brain stem? Like you stop walking and your brain just keeps moving? It's a horrible feeing.
Hang in there sweetie, I've never seen you so upset here before so I know you're going through hell. PM me if you need to.
Love ya, LInda
Mark N
12-21-2007, 08:03 PM
BB, Erin is right that the best thing is to get a new doctor. There is a problem that Cymbalta is a new med and many doctors don't know the effects of going off the med.
Cymbalta has been very good for me but I have gained weight from it. What are the SE you are dealing with as you go off the Cymbalta? I haven't heard of problems going off of Cymbalta. I have heard of the SE of the med just not going off of it. It is a shame your doctor didn't give you a schedule to wean yourself off the meds.
I am sorry you are going through this but hope that you let me know of the effects of going off the med for my future reference.
bluebirdy
12-21-2007, 08:37 PM
Gimpy knows me, and I hope Mark N remembers me! I've been around BT for a long time and I'm not like this.
When I told the pain doc of my concerns about coming off of it, he gave me two bottles of samples (only 14 pills) at half-dose and I was on my own. I "titrated" myself as best I could. This is RIDICULOUS.
I figure now my best bet :eek: is to go back on it at a lower dose and come off it over a longer period. But that's all a fantasy in my head unless I hear back from my doctor's office ... and he's willing to Rx something. I don't think I'm going to hear from them until after Christmas.
I've heard of patients opening the capsules to prepare titrations of their own. It should not have to be this way.
My Christmas cards are gonna be way late this year.
thanks you all, bb
bluebirdy
12-21-2007, 08:39 PM
I wanted off of Cymbalta to start with because of the weight gain. Which the NP and doctor swear Cymbalta doesn't cause. Again, can they spell G-O-O-G-L-E?? :( :mad: :rolleyes: :eek:
Gimpy
12-21-2007, 08:49 PM
Blue, I didn't even get out cards this year because of what I was going through after the surgery. Lighten up on your self and get through this and everybody WILL understand. I'm sure your drs. office will give you a script. If they are not there a dr. on call should be able to call you in a temp. script until you see your dr. They are hearing more and more everyday about these w/d's so it shouldn't come as a surprise to them. If not, go to a walk in clinic, non-urgent care type place. It will be worth it to salvage your holiday.
I'll say a prayer for your sanity tonight!
Big hugs, Linda
I am tapering off of Effexor right now, which is similar to Cymbalta. I have been pleasantly surprised with the lack of withdrawal symptoms so far. We are doing a SLOW taper on purpose. I had horrible SSRI "discontinuation syndrome" (aka WITHDRAWAL) symptoms when I stopped Celexa cold turkey several years ago, so I was really dreading this Effexor stuff. But it has been okay.
Did you taper at all, or did your doc just plain stop the med?
My psychiatrist was well aware of the SSRI "discontinuation syndrome." Since Effexor XR only comes in 37.5, 75, and 150 mg pills, and they cannot be cut, we just went from 75 down to 37.5 mg. I was afraid it would be too big of a decrease, but it's been fine. He did say that if I had withdrawal symptoms that were really bothersome, then we could substitute another SSRI for the Effexor XR so we could do a better taper. He said that he prefers to use Zoloft for this, and that it comes in several strengths that we could use to gradually stairstep down. So far, though, it looks like I'm not needing it (fingers crossed).
I do remember that the Celexa withdrawal symptoms DID finally go away with time. But they were hard to put up with while they lasted.
I hope you start feeling more like yourself again soon. Hang in there...
Mark N
12-21-2007, 10:41 PM
BB, I remember you and know that this is not your normal reaction. You are right that our doctors should be more concerned about helping us wean off our meds. If you can get your doctor to answer I would go on a lower dose and slowly work off the med. I hope you get things worked out and your doctor is more responsive than he has been so far.
debhun
12-21-2007, 11:16 PM
bluebirdy Sorry you are having a bad time. I came off of it this summer. I told myself I would Never every go on a brain med again as long as I can take care of myself. I know pain meds are but not like Cymbalta. My Rx told me to open up and take a few every day then every other day. I almost die from taking that and tramadol together. BIG NO. So I come off both at the same time. I have to go back and look at my post on Cymbalta went I was come off. I do remember having zings in my head alot. But they went away with time too. I wish you luck and here is some hugs.
(((((((((((((((()))))))))))))))))
Deb
GardeniaGirl
12-21-2007, 11:17 PM
I was on Remeron for headaches back in 2002-2004. I eventually decided to get off it for various reasons and OH MAN - those next 6 weeks were absolute torture!!!!!
I wish at the time I had known to ask for some type of benzo - that would have really helped me...but, none of my docs suggested it.
I hope you are able to get some relief - whether through another med or whatever ...... I feel for you!
Its really bad timing to have to deal with this at the holidays.
take care, GG
Bluebirdy,
Just know you are not losing your mind hon...It is the drug and it will just take a while for it to be out of your system...Probably at the worst five to six weeks...I just went through this with reglan...I only hope these docs have to take these drugs they prescribe for us some day and then have to go off them without help...It can be real hell....
I thought with the reglan that I was never going to feel well again, but know that you will...I feared that I did brain damage and would never be normal again...I did not...These feelings all go along with the withdraw from these kinds of drugs....My primary care doc was no help...She wanted to put me on Ativan...My pain doc said no....Then she suggested Effexor, Prosac, or Paxil....I said no to all....I just said I refuse to put more chemicals in my body....Hang in there kiddo...You can do this...It sounds as if you have the support of your husband...If you have family support you will get through this...and of course all of your friends here...
They wanted me to go back on the reglan after being off of it for two weeks cold turkey...I refused to put more of the stuff back into my system...I toughed it out, but it took about another three weeks....I feel better now...but am also reading a book called Feeling Good....
You will be feeling better soon...Hang in there ....I will keep you in my thoughts and prayers....Try to find something to keep yourself busy...Try a puzzle or shopping...Getting out of the house and into new surroundings...Anything to keep your mind off how you feel...It is tough, but you can do it....
gizmogirl
12-22-2007, 03:26 AM
since cymbalta tries to conserve not just your serotonin but also your nortriptyline (I thought just enough to market the heck out of it!), I guess you could have fuzziness or on/off focus coming off. You still haven't said what your side effects are other than the weight gain?
I think that titrating down twice as slow as up has been a good rule of thumb for me, but I've never had severe SE's, just headache.
Rozia
12-22-2007, 07:44 AM
When a NS wont perscribe it you knows something is wrong . My GP dr. tried me on it , started out with a few at a time . by the third day I was screaming, heart racing and had a feeling I was going to die . It is the worst med I have been on . And the Effexor is about the same . terrible wanted to bite peoples heads off. and please everyone , get some help from your Drs. getting off these meds , its only a phone call and its free. Dont mess up your life .
Diandra
12-22-2007, 08:18 AM
Hi Bluebirdy,
You have every right to be angry because these pharm. companys often care more about the $ bottom line than caring for the people that take their drugs. If you are up to it, use your anger and experience to write a letter to the company and to the attorney general in the state where the drug maker is. You will blow of some steam and may very well help others who struggle with Cymbalta withdrawal.
I am sorry for your struggle....I had a horrific time when I went off Oxycontin and my doctor also was ill informed he me dropped me down way too fast and I really suffered. We used to have a great guy by the name of Fred who is the one who actually gave me the best titration schedule and that is what I used. My doc gave me Clonidine(actually a blood pressure med) that really helped with the withdrawal symptoms...don't know it will work with Cymbalta withdrawals. Also, my xanax was increased at the time because I was having such bad leg cramps and that feeling called we jokingly called on the forum the "heebie jeebies".
You are smart to ask about going back on a small dose to help get you through the holidays. Hope doc calls back. What are you being given to replace the Cymbalta?
Take care BB...will pray for doc calling back and helping you.
Diandra
BrokenBladder
12-22-2007, 10:43 AM
BB,
I remember you!! I'm so sorry that you're going through these w/d's. I hope you hear back from your doctor ASAP so he can fix this!!
In the meantime keep coming back here and blowing off steam because it does help!!
Let us know how you're doing as the days pass by.
bluebirdy
12-22-2007, 08:37 PM
I haven't heard back from my prescribing doctor ... so I'm just on my own. Trying Benadryl, going to buy some Antivert for the dizziness and see if that helps. I'll write more about my symptoms later. In the meantime, I don't think hubby has ever seen me about to snap his head off :eek: like I have been wanting to.
hey - I still have the original Rx so I could go back on the *#(@*#(# med :rolleyes: :mad:
bb
Gimpy
12-22-2007, 11:42 PM
BB: There is an over the counter herb called valerian root.
Here is a link to some info on it: http://www.1001herbs.com/valerian/
It is natural but works to calm you like valium and it is available at almost all the pharmacy/drug stores. It has one major side effect though and it is the smell and taste. If you can get past that it does work and might help you get through until you can talk to your dr. Have a BIG glass of water ready when you open the bottle, the smell is that bad. But it will help ease your discomfort.
I'm sorry you're feeling this way, I was just going through it myself so my heart goes out to you. Talk to the pharamacist to make sure the valerian doesn't interfer with any of your other meds.
Hugs, kleenex, anything you need,
Linda
Mark N
12-23-2007, 12:13 AM
BB, I hope you start to feel better in a few days, even if the SEs are over yet. If not, don't be afraid to take it again and triate down from there. It may be worth it to go back on it until Christmas is over. Then see you doctor for lower mg prescriptions each month until you feel you can stop using it.
bluebirdy
12-23-2007, 11:57 AM
When I got up, for the second time, this morning - hubby had a whole bunch more info he'd been Googling on SSRI withdrawal, and was telling me all about it. He's gotten very involved in this - totally unlike him - and it's great because he's not just hearing it from me. I told him: "Well, WELCOME TO MY WORLD!"
Every time my eyes move ... the electrical/metallic sensation in my head/eyes/ears ... I've compared it to "tinnitus of the eyes" is just DRIVING ME OUT OF MY MIND. Hubby even found this (!) I'm dizzy, bp is up, hyper, could bite your head off at any moment, can't sleep, blood sugar keeps bottoming out making me ravenous (most people report no appetite) ... and more.
Maybe my HEAD SPINNING is from trying to figure out how the prescribing docs can POSSIBLY be this stupid?? Our best theory is "plausible deniability" ... the docs want to only hear about their drugs from the cute-sample-toting drug reps who visit, who in turn minimize side effects. That way, the docs can claim they don't "know" about all the side effects the drugs they Rx are causing. That of course always leaves us patients in the Twilight Zone when discussing these things with our doctors and worse, it leaves us on our own in dealing with the medical consequences. IMHO this is medical malpractice.
bb
Mark N
12-23-2007, 12:14 PM
bb, sorry to hear your doctor is like this. I am very fortunate that my doctors are much better than this. Also that I haven't had these problems the times I have tried to go without Cymbalta. Each of our bodies react differently to meds and it is too bad that you are suffering like this without help from your doctor.
Have you gotten any idea from your research on how long the effects will last?
Your doctor isn't doing a very good job whether he knows much about Cymbalta, makes you wonder what he is doing prescribing it. You are right about it being some kind of medical malpractice.
Gimpy
12-23-2007, 12:44 PM
IMHO this is medical malpractice.
bb
I agree 250% Blue! Go to a walk in clinic and get some help!!! They are seeing more and more of this all the time. You do not need to suffer through the holidays because your dr. doesn't give a shoot!
Maggi315
12-23-2007, 12:52 PM
I am sorry to hear you are having a hard time, my neurologist tried me on cymbalta after my sleep study showed I woke up 116 tiimes in 6 hours. I tried it for about 2 weeks and realized it was making me feel worse, not better. Iwas able to white knuckle it for about 2 days, and get off, but then again, I was on for such a short period of time.
I have been on many different anti=depressants over the years, the absolute worst for me was effexor, I really thought i was going to have to be checked into the hospital and put on heavy tranquilizers while I went through the withdrawal.
I am currently on wellbutrin and have been on prozac, both I have weaned off without problems, I am afraid to go off the wellbutrin, because i do think I have a problem with serotonin and I do think I feel much better and calmer on the meds. I do hate the fact that I have gained weight on all these meds and I have been tempted to quit for that fact alone!!!!
There are some support groups online for people weaning off meds like these, maybe someone else has mentioned them, I can't think of the names off the top of my head, but maybe do a google search or look through the yahoo groups?
Good luck, you have my sympathy and empathy!!
bluebirdy
12-23-2007, 02:39 PM
You all are WONDERFUL ... each person who has written ... every one in support.
I was on Zoloft originally ... then NP shifted me to Cymbalta when it came out. So I've been on one SSRI or another for several years and my brain doesn't want me off of them - to say the least.
On a better note - we are going out to dinner tonite with friends to celebrate Christmas! At a wonderful,charming, fancy-but-Southern restaurant. My good friend is a spiney with severe problems who was on BT at one time and was just dx'd with cancer. WE ARE DETERMINED TO HAVE A GOOD TIME!!!! And if anyone interferes with our good time, we'll, well, just bite their heads off :rolleyes: :D
bb
p.s. Gimpy - a special thanks and to Mark N too :) ;) :) ... and Maggie - the NP tried to get me on Wellbutrin to counter one of the common s/e of Cymbalta that I don't even want to go into right now!
Mark N
12-23-2007, 02:48 PM
bb, Have a great dinner and if anyone tries to keep you from having a good time you will be in the proper mood to bite their heads off:) . Have a good time and that southern cooking sounds very good right now. I could use some greens and ham hocks along with some cornbread [or cornbread dressing] and iced tea.
Have a very Merry Christmas and a Happy New Year.
BrokenBladder
12-23-2007, 03:43 PM
BB,
Just get out there and have a great time!! I'm glad that you're getting out of the house and with any luck it will take your mind off of the Cymbalta.
BB,
What you are feeling will subside eventually...I went through this going off the reglan...The docs kept saying that I should not have the kind of feelings of withdraw I was having and that they did not know why I was feeling the way I was etc...It is really great to be able to pretend you do not know or understand these drugs, but if enough of us have these problems they cannot keep on pretending not to know about the side effects coming off these drugs...People should not have to suffer like this when they decide they do not want to take these drugs anymore. I tried calling a crisis hotline, but they told me I was not an addict so I did not have a problem...I had to go through it alone except for my counselor and friends here...Otherwise, no one understands what it is like to go off these drugs....Just know you will have a few bad weeks and then all that you are feeling will be gone...I did try taking Vitamin B to help stabalize my nerves...It seemed to help...Other than that I cannot offer you any other help than to know that you will feel better soon...Hang in there...and keep coming back here to talk to us...Try to keep yourself occupied doing other things so that you do not think about how you are feeling...I know that is difficult, but I tried shopping, reading...etc...
Gimpy
12-24-2007, 01:43 PM
BB: I hope you had a restfull, fun evening last night and are enjoying the day. I have been thinking of you and another very special, dear friend of mine on these boards as we listen to Christmas music, make cookies, fudge, chicken and homemade egg noodles, honey baked ham, veggie trays, chips and dips. I wish my cyber friends could come join us tonight to celebrate.
I will be thinking of you tonight, Merry Christmas!
Luv ya, Linda
BrokenBladder
12-24-2007, 01:59 PM
BB,
Just wanted to check in with you and see how you're doing!! I'm sorry that your doctor is such a jerk and won't even call you back.
Please let us know how you're doing and how the dinner went!!
bluebirdy
12-24-2007, 03:16 PM
Really needed to get out last night and have a wonderful dinner and forget how I'm feeling for awhile ... and I did just that!! :)
Today we're taking it easy and I've been trying to calm down. Been up since middle of the night again because I can't sleep. I love to bake and I haven't baked the first cookie. So I'm going to do that a bit later.
Then THIS happened about an hour ago. While hubby waited in the car, I went in my pharmacy that starts with "C" to get some OTC antivert (dramamine) to see if that will help with this dizziness/tinnitis/screeching in my head that's driving me NUTS. I stopped at the "Consultation" window to ask the pharmacist if it's OK to take that with all my Rx's.
I then asked him if he knew about the problems going off of Cymbalta. His response? "No, no ..." Incredulously but calmly I asked if he hadn't even ever Googled this topic? His response? "Well, there are a lot of people on Cymbalta." I pressed one more time and asked, "You haven't even heard of problems people have going off of anti-depressants in general?" To which he didn't even reply but just stared at me in silence like I had just dropped in from MARS and my UFO was waiting in the parking lot to pick me back up!!!
When I got back out to my UFO (!) and hubby, and started pouring out this latest story, he could only ask what condition I left that pharmacist in :rolleyes: :eek: (This was the head pharmacist btw ... I'd already asked one of the other pharmacists about my w/d the other day - to no avail.)
:mad: :mad: :( :eek: :confused: :rolleyes: :( :mad:
Mark N
12-24-2007, 03:58 PM
My SIL is a pharmacist and keeps up with meds and the SE. If she doesn't know the answer she will look it up and get back to the customer with the answer. Your pharmacist should at least get back to you on it. Now get on your UFO and go back to Mars before our oxygen rots your brain:D oh wait a minute it is just the WD you are going through:) . I am glad you had a good time last night and hope the WD end soon for you.
BB,
I am not surprised about the pharmacist since I too have had the same response...Geez ..the docs, the pharmacuetical companies, and the pharmacists...No one but us knows of the side effects of these drugs...I called my pharmacist at our local grocery store and she said oh you can just stop this drug...no problem...so when I did have problems she was baffled...then I called my regular pharmacist who said I could not just stop the drug, but did not know how to titrate off the drug...She felt badly for me...but did not know what to tell me to do.... I called my doc and he said just cut it down to 5 mgs and then stop it....I felt good for two days and then it was like the bottom fell out....and I felt like you do now for about a month....There has got to be an easier way to stop these drugs....
I hope you find something to help you BB, but I think you just have to tough it out...I hope you have a nice Christmas...I will certainly keep you in my Christmas prayers tonight...I know what you are going through...God Bless....
spondygurl1
12-24-2007, 10:23 PM
I am so sorry you are having such a hard time on coming off this drug. I was a true mental case when I was on Effexor. I would sit at work and stare at people I didn't like and imagine myself just getting up and knocking the hell out of them for talking to me. The paranoia got so bad that I was actually going to hurt someone that I would literally get up and go outside until I calmed down( I work with alot of gossips that I don't like so it was easy to imagine myself shutting their mouths for them with a good right hook:D ). My sister got arrested while on this drug. She was in a resturant and saw a man holding his baby daughter and said she remebers thinking(he's abusing that baby and got up and punched the man in the face. She didn't know him from Adam and got locked up and had to do community service. She went off Effexor immediatly and so did I because it caused us both to become so filled with violent feelings. I guess I'm lucky I never hit my coworkers huh!)
When you do see your Dr,take him the printouts from the internet that you have found from Google. Obviously he needs to be educated that Cymbalta DOES have side effects and you seem like the lady to do it!
mrsdoubtfyre
12-25-2007, 01:24 PM
Do not open capsules or tamper with them. There is a warning to that effect
from Lilly.
Here is a paper with some stats:
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=16266753&ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum
It is a darn shame that the push to use this drug by drug reps is not balanced by information on how to taper. There is no excuse for this.
No one knows how to use these drugs lately because.... because the drug companies don't TELL them, because they don't want to
air the TRUTH about their drug! Cymbalta is the only SSNI/SSRI that causes liver damage! Is there any advantage to using it over Effexor? Nope.
Effexor comes in tablets and SR version. The tablets allow for careful taper. Lilly made their product in 3 doses only in capsules, and none small enough to use
as a taper. And they have a warning besides, to NOT open or tamper with the capsules. DUH? Is it any wonder that Lilly's salesforce calls the company
WE LIE LILLY? (for Eli Lilly)
bluebirdy
12-25-2007, 05:14 PM
the latest ... I'm taking my vitamins, trying Benadryl and Dramamine (alternately) ...but this just has me totally whacked like nothing I've ever experienced. My best friend of a zillion years and her hubby just left after a Christmas visit, and she's never seen me like this! No one has ever seen me like this! I'm usually so cheerful and easy-going. When they were here our dogs were barking, Christmas music was playing, and everyone was talking loudly. All the noise just rattled in my brain along with the Cymbalta rattling until I could just about bite every person's head right off. Told 'em that too. They love me of course. But I can fully understand how someone could do something out-of-character because of this drug and the withdrawal.
spondygurl1 - you felt like I do! ... and I'm so sorry about what happened to your sister
GJZH - we already knew that doctors are totally ignorant about the drugs they Rx ... I'm more than a little disappointed to find how ignorant a lot of pharmacists are :confused: We patients, especially patients with chronic illness/pain, are the only ones who know the truth about surgery, procedures, meds, and all the rest ... yet WE get treated like we don't know what we're talking about! They have their cake and eat it too - all at our expense.
I never heard from my doctor's office - and you know they have someone on-call. If and when I do hear from them this week - I don't know what I'll do re the w/d. But it's sure not getting better on its own. Not yet.
Merry Christmas, bb
Mark N
12-25-2007, 06:07 PM
bb. sorry to hear the wd is still troubling you so much. You are right that we know as much or more than the medical people and yet most of them act like we don't know what we are talking about. It really makes me thankful that my doctors listen to me as I hear more and more of the troubles people have.
bluebirdy
12-25-2007, 09:24 PM
Mark N - I always thought you were an absolute blessing on BT. And here you are, as always, with such kind support. Hope you've had a VERY Merry Christmas :) bb
BB,
On the topic of pharmacists...We had an Asian pharmacist at our local grocery chain...He was very honest about the drugs and would come right out and say to me...You do not want to take this drug...it is very, very bad drug...Are you certain you need this drug...but unfortunately he was transferred and I need to find out where they transferred him to....I think though that he was moved to administration...He was very happy about the transfer and probably pay increase, but the person they replaced him with is totally clueless and lazy when it comes to drugs...I stopped asking her about the drugs and side effects...She does not bother to look anything up and does not know a thing about any of them. She is not worth her pay and should be fired. I have since moved all of my scripts from this pharmacy to another with a pharmacist that takes a little more interest in her job...
BrokenBladder
12-26-2007, 08:00 AM
BB,
I hope you're feeling at least a little better today!! Bless your heart for having to endure this and with no help from the doctors or pharmacist that you are supposed to be able to trust. I'm keeping you in my prayers.
bluebirdy
12-26-2007, 10:56 AM
The pain doc's office has finally returned my call - 5 days later :rolleyes: . I didn't get to the phone in time so I have to call them back. I've got to decide what I want to ask them for at this point, i.e. whether to go back on Cymbalta at a low dose. If only I knew how long this was going to last :confused:
take care, have a good day ... bb
p.s. GJZH - I'm really disappointed in the pharmacists - I thought they were sharper than this.
bluebirdy
12-26-2007, 05:38 PM
When I finally talked to the nurse at my doctor's office, SHE TOO HAD NEVER HEARD OF ANY PROBLEMS GOING OFF OF CYMBALTA!!!!
living in The Twilight Zone ... bb
mrsdoubtfyre
12-26-2007, 06:25 PM
When the maker of the drug, does not inform the prescribers of the drug how to use it, and withdraw it...The problem lies with the Drug Company!!!!
There is even an online petition against Lilly for keeping Cymbalta information from doctors.
Pharmacists cannot treat patients in the US. Doctors and nurses do not know about the evils of Cymbalta...because the Lilly salesforce keeps the truth from them. They do however get good lunches.
Here is the petition being formed about Cymbalta:
http://www.petitiononline.com/CYM2006/petition.html
Here is a link to the Eli Lilly drug sales forum, regarding Cymbalta:
http://www.cafepharma.com/boards/showthread.php?t=210369&highlight=Cymbalta+withdrawal
It is too long to copy here.
The problem lies with the drug manufacturer who has at every step of the approval process hidden data about this drug from professionals and the public.
And that is not all.
Lilly has done this with Prozac, Oraflex (taken off the market, because of fatal liver damage) and Zyprexa as well. Historically and publically known to be a very evasive and destructive.
Here is some sobering information if you are curious as to how drugs are marketed in this country.
In this link is an autobiographical admission from a doctor who was recruited to sell Effexor to other doctors by Wyeth. (Effexor is similar to Cymbalta).
He had to admit to himself that he was being USED. It is sobering.
http://www.nytimes.com/2007/11/25/magazine/25memoir-t.html?pagewanted=1&ei=5088&en=65ab0881aa7b9d50&ex=1353646800&partner=rssnyt&emc=rss
Why were you given Cymbalta in the first place? Probably to satisfy the drug salesperson who was pressuring the doctor with incentives, and other goodies. Not because it is any better than Effexor, which is not any better than other antidepressants. Besides Cymbalta causes liver damage, which none of the others do. But then that was only made public AFTER marketing.
Typically the way Lilly works.
Mark N
12-26-2007, 08:57 PM
Mrs D, you have your own perspective and agenda. I happen to be on Cymbalta because it treats my neuropathic pain better than anything else out there not because of any pressure from salespeople.
I don't know all the details of each of their medications but Lily is the last privately owned American drug manufacturer that hasn't been gobbled up by international conglomerates. They have been the leader for many important medications and have been very good benefactors to the Indianapolis community and state of Indiana. The give out billions of dollars in charity [schools, arts, public works] through their endowment. It is a privately owned American company that has been a good neighbor and charitable organization besides bringing many important medicines to us.
bluebirdy
12-27-2007, 07:07 AM
Mrs. D - thanks for all of that information ... I'm going to check out those links right now!
I wrote a lot then deleted it ... I'll keep this brief for now. I resisted going on Cymbalta, and would not do the even higher dose that kept being pushed on me. I assume I was put on it for both the anti-d and periph. neuropathy effects. Going off of it was totally my idea.
bb
Mark N
12-27-2007, 08:45 AM
bb, I really am sorry for all you are going through and my doctors have never told me there are no SE and told me to never just stop taking Cymbalta. The links Mrs D provided are typical of anectdotal complaining not supported by any research and one psy. doctor that was uncomfortable with his role as a sales rep for a drug company. This is like the push several years ago about the evil "Tylenol" and how poisonous it was to our livers. I saw post that said exactly that and no one should take Tylenol at any dosage. This scare tactic approach has nothing to do with your case and I am sorry it got interjected into your post.
It is clear Cymbalta is not the med for you just as it wasn't for my wife. She didn't suffer WD like you have, although she wasn't on it very long and only at 20mg. As far as your doctor and pharmacist not knowing about the SE I think they need to continue their education. When I started on Cymbalta my doctor started me on blood test to check my liver every 6 months because he knew there was a potential for liver damage just as Tylenol and othe meds [even alcohol] increase that risk. He told me to let him know if I wanted to go off of Cymbalta because it was a med I couldn't stop cold turkey and needed to triate down slowly.
What your doctor is doing is medical neglect bordering on abuse. I don't think it rises to the level of malpractice but he sure isn't providing the care he should nor does he have the knowledge about the meds he is prescribing, at least in your case. I am sorry you are going through all of this and hope it ends soon for you. I hope you are able to find a doctor that is willing to give you better care in the future.
mrsdoubtfyre
12-27-2007, 09:30 AM
The truth is out there. I am only the messenger.
Both Effexor and Cymbalta are chemically and medically similar. People should be told this when therapy is begun. If you had to choose between them, one that does not damage the liver, and one that does, which would you choose?
The hoopla that Lilly went thru to get the marginal effectiveness for neuropathy was only money spent. They needed that edge to beat out Effexor, which was going off patent soon. There are many pain doctors using Effexor with success the same way. Both have short half lives, and Effexor has the tablets which can be used in a downward taper. Cymbalta has nothing to help below 20mg. And because of its short half life, every other day is not too successful.
SSRI withdrawal was not expected by the drug companies at all. In fact Prozac was not completely understood as to mechanism of action. The studies in the beginning were relatively short and gave no clue. (And Lilly being the manufacturer of Prozac NOW knows all about discontinuance) The technical word for SSRI withdrawal is SSRI discontinuance syndrome. Sort of sugar coated to try and separate it from the word "withdrawal".
In fact think about what withdrawal means to doctors. Withdrawal in an addict or habituated person, typically has MEDICAL repercussions. In opiate withdrawal, if severe, a person an die as a worse case scenario. Other drugs may cause seizures during "withdrawal". So doctors typically attend to this aspect in these situations.
But SSRIs do not cause severe measurable medical consequences (blood pressure does not change, seizures do not happen etc)...but they are very very uncomfortable for the patients. This is a subjective event, and not really very unlike
the initiation of a new drug in a treatment protocol, which we call "side effects". The vast majority of those side effects are considered part and parcel of the treatment. What are people told when they get dizzy on new SSRI introduction? They are not told to d/c it, but to endure the dizziness (never mind the risk of falling and breaking something! ). "It will go away, etc" And I have observed personally and professionally that the discontinuance of SSRIs is considered the same... non life threatening. Many doctors do not know about titrating off SSRIs so they think the same..."It will go away". With time we have seen however the really downside of SSRI/SSNI treatments. The acting out behaviors, the whole controversial package. So from a humanistic perspective, I think the doctors prescribing this whole family of drugs should be more aware and responsible.
This thread is not new. There are many many hits on Google from patients going thru this same situation. I have no "agenda" but it is clear to me that the proper management of this drug is problematic across this country.
There is a public service website that discusses many of the negative
experiences with this family of drugs.
http://www.drugawareness.org/ICFDAboard.html
And one thing not brought up here is the effect on blood pressure. Both Effexor and Cymbalta may raise it, depending on the patient. That should be monitored closely as well as the liver functions for Cymbalta.
Mark N
12-27-2007, 10:48 AM
Mrs D, I understand you are only presenting the side you know about the issue. I just see life from a different perspective and there are risk to all that we do, the question is the benefit we receive. I have had very good results with Cymbalta but don't go on different post pushing the use of it because that is for others to decide for themselves. I chose not to use anecdotal evidence because I know how distorting it can be. For example the pain meds I tried before settling on MSContin were horrible for me but my experience doesn't determine how those meds will be for others. They just weren't very good for me.
I do enjoy getting different real life experiences from this forum. BB can see how others suffered with wd from Cymbalta and know what to expect. I just don't know how much better a proper triation would have her doing. It may be her doctor's lack of competence rather than this 'drug company that pushes its harmful meds' . Like I said in an earlier post I know of the good that Lily has done and the billions given to charity every year along with the high pay for their employees, I hate to see it bashed without any real evidence of maleficence [yes we can point to mistakes all companies or people make but it doesn't tell us the real story].
ps, I don't work for them or have any family or friends that work for Lily
bluebirdy
12-27-2007, 12:25 PM
Here's what I started to write earlier and deleted - before I read any of what Mrs. D wrote .. and I haven't finished reading.
I KNOW that something is amiss in this whole h*ll-going-off-of-Cymbalta-picture. After you've lived a few decades you learn that when things don't add up, even after gathering more information, something is at play that you are NOT aware of.
What I've read so far in Mrs. D's links that is potentially most shocking - and would sure explain a lot of this dumbness - are the contracts to keep silent about s/e's. Does anyone know first-hand if these contracts really exist??
All these medical people can't be this dumb - not in an age when we have Google at our fingertips. And don't forget - I spoke with the pharm company personally - and they were infuriatingly unhelpful, constantly referring me back to: 1) Cymbalta.com and 2) my prescribing doctor - who says he knows NOTHING about any problems. :eek: You all can check out Cymbalta.com yourself to see what it says.
I've got another doc appointment because of these side effects - with my Neurologist. Since there's such a rare chance he's ever heard of the s/e's of going off of this drug, I've got to print out information to take to him. How am I going to get a specialist to evaluate how the Cymbalta situation is affecting me ... when I have to first give him a crash-course in the 5 minutes he'll want to spend with me?? :mad:
bb
mrsdoubtfyre
12-27-2007, 01:12 PM
The vast majority (and I have read figures up to 90%) of drug information
is given to doctors by drug salespeople.
Over the years, this has become highly controversial. The first reports of SSRi
discontinuance syndrome started with Prozac (a Lilly drug). At the time this drug came out (it was the first of its kind), next to nothing was understood about it.
As the years passed post marketing those trying to discontinue it started running into problems. Now that Prozac is generic, we don't hear much about it. But Paxil has a huge website, for patients trying to come to terms with it and its downsides. Now we know about neurotransmitter receptors, more clearly, and more about this discontinuance problem. Prozac has the longest half life of the SSRIs, just because. It was not made that way on purpose. It has been found that the shorter acting drugs like Paxil, Effexor and Cymbalta are harder to come off of than the old Prozac. In fact some doctors use Prozac (which has a liquid form) to help taper patients off of other SSRi drugs. Effexor and Cymbalta have combined actions with norepi and serotonin, so they create additional problems. For several years now, people have been coming on the web with complaints about Effexor and how even after a taper, they don't feel normal. I consider Cymbalta a "me too" drug. It is very similar to Effexor, but has a more toxic profile.
Here is a paxil forum, complete with threads on withdrawal.
http://www.paxilprogress.org/forums/
I have been around for a LONG time, so I see the threads of experience with different eyes. When I was in practice locally there was only one psychiatrist who was tapering his Effexor patients, and he was affiliated with the local teaching hospital. His tapers were long and expensive for the patients, because each time a new dose was ordered down, a new copay was needed.
But the patients did the tapers, they paid extra for them. The smallest dose of Effexor is 25mg tabs and they were cutting those up, near the end.
Now I'd like to address Bluebirdy's question. You know, pain doctors and others who take care of fibro, IBS patients, prescribe these two drugs commonly because of the mixed actions they have in the brain, on the pain loop. I attended a very long complex seminar this past spring, about the use of these drugs, as well as others on chronic pain/headache/ fibro related patients. NOT ONE WORD was shared about discontinuance. This lecture was part of a tertiary clinic affiliated with the Univ. of Michigan. The physician who gave 2 of the hours was the only one not affiliated with a drug company.
He was the fibro expert, and mentioned that fibro was the next horizon for a blockbuster drug... and today we see this month the Lyrica approval for fibro on TV no less.
Drug companies do studies. Some even ghostwritten now it has been revealed. And they do NOT publish the ones that are not glowing. The State of New York sued Glaxo for Paxil and forced them to publish all the negative studies on children, for example. You can find them on the web now. BUT they were never given to doctors, during the detailing process.
The abuses being uncovered today, that sway your doctor into using drugs, that may not be in YOUR best interest is a huge huge problem. This problem has grown over the last 2 decades. It is just beyond the pale, IMO.
This is why I come to the health boards. It is important to take some interest now, and inform yourselves about the very drugs you put into your body.
And about surgical procedures, etc. That is what this board is for.
You will spend more time picking a refrigerator or car today, typically, than examining if your medications are appropriate for you. Certainly not all doctors are at fault here. And many just don't know the extent to which they may be misled. But I think gone are the times we can blindly fill an RX without asking serious questions. And your doctor may not be able to answer some questions, because they just don't know!
If you go to Cafepharma.com and read the Eli Lilly forum you will see posts there from sales reps themselves, who got into painful withdrawal with Cymbalta. They were not given this info by their own company! Of course those salespeople are NOT medically trained, and only pass on information provided by the company. The days of pharmacist/doctor sales reps are LONG GONE. I have recently heard they won't even interview pharmacists any more, and in the past that was the only profession they hired. HMMMMM?
And as a final answer to Bluebirdy.... the doctors with the most useful information about Cymbalta are psychiatrists, most often in a teaching capacity, and not GPs, pain specialists, or neuros.
bluebirdy
12-27-2007, 01:30 PM
Mrs. D - you have spent a lot of time posting info here for me and others, and I really appreciate that. Thanks for the info that psychiatrists are the specialists most informed - the one specialist I don't have :rolleyes: But may need - very very soon.
My eyes are driving me crazy doing stuff on the computer - so the s/e's are robbing me of something I enjoy as much as possible with the back pain. I'm going to get hubby to print the info out for me to take to the Neuro. My only hope lies in the Neuro - and I'm so afraid he won't have a solution for the racket going on in my eyes and ears and vision that's DRIVING ME NUTS.
bb
Gimpy
12-27-2007, 01:48 PM
ANYBODY who thinks that drug companies are 100% on the up and up are in denial and should be buying some bridges in the salt flats. I went through the same with with Effexor. As they pass out the newest, latest, greatest drugs some of the side effects have been hidden, or why would it only come out after it hits the general public? How is it possible that test studies don't show these problems, then when they are out in mass that the majority of people have problems coming off these drugs? Even if they get their drugs out there for only a few years they can recoup some of their cost before they are pulled or have to add the w/d symptoms to the side effects list.
Medicine is money, bottom line. They truelly don't care who they hurt or how they hurt them as long as money is being brought in. You're kidding yourself if you think otherwise. This is a pill sucking country. We are lazy, over weight, and we'd rather take a life time of pills to help it than get off our a$$s and fix it our selfs and the drug companies know it. So to add a little something that makes it unbearable to stop the medication is not to far fetched. Cigarett makers did it for years and there were most definately secreative memos about it. It will all come out one day.
Gimpy
mrsdoubtfyre
12-27-2007, 02:01 PM
Mrs. D - you have spent a lot of time posting info here for me and others, and I really appreciate that. Are you a psychiatrist? I've seen you on BT for ages but sorry I don't know your background. And thanks for the info that psychiatrists are the specialists most informed - the one specialist I don't have :rolleyes: But may need - very very soon.
My eyes are driving me crazy doing stuff on the computer - so the s/e's are robbing me of something I enjoy as much as possible with the back pain. I'm going to get hubby to print the info out for me to take to the Neuro. My only hope lies in the Neuro - and I'm so afraid he won't have a solution for the racket going on in my eyes and ears and vision that's DRIVING ME NUTS.
bb
I have sent you a private message.
There are non RX ways to help coming off SSRIs ... one is l-tryptophan. This has become available now again in this country since the summer. Vitamin B6 and tryptophan work together to make serotonin. Some holistic doctors use this combo to help people get off SSRIs.
You should not use this however, as long as you are on an SSRI/SSNI because of the risk of serotonin syndrome. (an elevation of serotonin).
Another thing that happens, when you are on SSRI type drugs for a long time period is that the brain downregulates another neurotransmitter called dopamine. This can then create a whole slew of negative responses.
This typically takes more than 6months to happen however. And it is harder to deal with. The psychiatrists typically use Wellbutrin to improve this situation if that is what is really going on.
Yes, you might have to see a good psychiatrist to get normalized. But keeping cool, is also important. Added fear/anxiety does not help and also feeds the symptoms sometimes.
I am sorry you are going thru this... and I am afraid you are not alone.
Mark N
12-27-2007, 03:12 PM
Gimpy, no one said the drug companies are totally open about their meds as they are in business to make money like any other business. The FDA is the agency slated with doing the test on the new meds. Why aren't they doing a complete job, too many complained that drugs needed right now were being held up especially ones that treated HIV and that includes pain meds. The consequence is that meds slip through and we find out their SEs are greater than what is known or we slow the whole process down like before and don't get meds on the market for ten to twenty years it takes to do the complete studies.
Too many of us want it both ways and life doesn't work like that. If we want our hands on mdeciations sooner then we will pay the price of adverse effects for different groups. If we wait until complete test are done then Europe and other parts of the world will get medications before we do. The reason Europe gets these meds faster and why most major pharm. co. are in Europe is because they are not required to do the complete testing of the meds they produce. European society figures that is the price they pay to advance society. My OSS practiced in Europe earlier in his career and I asked him about why Europe got the meds and articfical disk so much quicker than the U.S., they are not required to do the complete testing before it is put on the market.
Do we want access to the latest meds or do we want to be protected?
Gimpy
12-27-2007, 03:36 PM
For these types of problems we are discussing here, I want to be safe. If I had cancer and have tried every drug available in America, then I might be on my way to Europe now. I don't let the drs. write scripts for my kids that have not been on the market for 15-20 years. Let them work the bugs out on some one else who believes the pharm. companies and our government are actually working for our best interests.
G
Mark N
12-27-2007, 03:48 PM
Gimpy, I agree with you about being safe with our meds and especially with our kids. I would also be more agressive and willing to take risk if it were a way to treat a terminal disease. With Cymbalta I had a much better support system with my doctor, my body's reaction, and research. When my wife started having problems I encouraged here to wean off before she got on it too long. She also has had terrible problems with most AD and was suicidal with Prozac. When a psy suggested it for my daughter we said no because of the problems teens had with it.
This has been an interesting thread to me, sorry bb that it got hijacked a bit.
mrsdoubtfyre
12-27-2007, 04:04 PM
The drug companies are certainly not commonly open about the negative aspects of the meds, so that doctors can respond to their patients with the care they were trained with.
In general following the adverse effects of drugs, I find that other countries are more forthcoming with data. The Netherlands have published warnings about neuropathy caused by statins. There are many papers on cell phone damage to the brain. The Hormone replacement studies all originated in Europe and refuted the studies done here by the drug companies for estrogen. It was only after a non-drug independent study revealed here ...the HERS study... how useless and dangerous the HRT really was for women.
Now, almost 15 yrs after the first statin, some doctors realize the connection with CoQ-10 depletion by these drugs. Merck knew that before patenting their Mevacor (the first statin). It had a patent for a dual product lovastatin + CoQ-10 ready--so they knew then. They never marketed it. Sales reps do not detail that link still because what patient is going to pay $40 a month for OTC product to offset the damage the RX is doing? The information has finally filtered down to some doctors, but not from the sales reps.
There are some good bibilographic references for this subject of Cymbalta at Wikipedia.
http://en.wikipedia.org/wiki/Duloxetine
Sometimes Wiki is unreliable, but this entry is very good.
Like the factoid that this drug was patented in 1991. Strattera, was similarly done very early in the 80's by Lilly, and left on the shelf when Prozac seemed more effective. Strattera was supposed to be an antidepressant. Later Lilly generated alot of studies, many questionable~~ to have Strattera renamed and redone for ADHD. This drug too has a very checkered past, and remains questionable to the sexual development for children.
This quote implies that Lilly understood discontinuance during studies:
Discontinuing Duloxetine
Further information: SSRI discontinuation syndrome
During marketing of other SSRIs and SNRIs, there have been spontaneous reports of adverse events occurring upon discontinuation of these drugs, particularly when abrupt, including the following: dysphoric mood, irritability, agitation, dizziness, sensory disturbances (e.g., paresthesias such as electric shock sensations), anxiety, confusion, headache, lethargy, emotional lability, insomnia, hypomania, tinnitus, and seizures. Although these events are generally self-limiting, some have been reported to be severe. This withdrawal phenomenon is known as the SSRI discontinuation syndrome- a laughable term concocted by pharamaceutical companies to deny their prodicts cause addiction.
Patients should be monitored for these symptoms when discontinuing treatment with Cymbalta. A gradual reduction in the dose, rather than abrupt cessation, is recommended whenever possible. If intolerable symptoms occur following a decrease in the dose or upon discontinuation of treatment, then resuming the previously prescribed dose may be considered. Subsequently, the physician may continue decreasing the dose but at a more gradual rate."[19] This tapering process may be ineffective for some patients.
In MDD placebo-controlled clinical trials of up to nine weeks' duration, systematically evaluating discontinuation symptoms in patients taking duloxetine following abrupt discontinuation found the following symptoms occurring at a rate greater than or equal to 2% and at a significantly higher rate in Cymbalta-treated patients compared to those discontinuing from placebo: dizziness, nausea, headache, paresthesia, vomiting, irritability, and nightmare.[20]
Many patients on the drug longer than the nine weeks of Lilly's discontinuation test trials anecdotally report evidence of serious withdrawals from Cymbalta, lasting from weeks to many months.
I just think it is prudent to look up your drug before starting it. Earlier in this thread I gave the link to the Medwatch reports themselves for all the drugs in USA. It is a very interesting read.
here it is again:
http://www.patientsville.com/
Here is Effexor:
http://www.patientsville.com/medication/effexor_side_effects.htm
and Cymbalta:
http://patientsville.com/medication/cymbalta22_side_effects.htm
Here is what some other patients say about cymbalta:
http://www.askapatient.com/viewrating.asp?drug=21427&name=CYMBALTA
Keep in mind this is the internet and no way to verify these.
If you are really brave, you can visit CrazyBoards. Very controversial, and outspoken. However, I am careful there always! :p
And yes, nothing is perfect, but don't you think we as patients are entitled to more careful use of the drugs, and understanding?
bluebirdy
12-27-2007, 09:53 PM
next up: Brain MRI, new script to help me get thru this, but he feels the only solution may be for me to GO BACK ON AN SSRI because ... are you ready for this?? ... my system obviously needs it!!
:eek: :rolleyes: :eek: :rolleyes: :mad: :eek: :mad:
Gimpy
12-27-2007, 11:39 PM
next up: Brain MRI, new script to help me get thru this, but he feels the only solution may be for me to GO BACK ON AN SSRI because ... are you ready for this?? ... my system obviously needs it!!
:eek: :rolleyes: :eek: :rolleyes: :mad: :eek: :mad:
A brain MRI because of the Cymbalta w/d symptoms? Geeze, another buck in someone's pocket. I'd find out if he owns any part of the group that operates the MRI system.
G
mrsdoubtfyre
12-28-2007, 01:07 AM
Prozac has been used to wean people off SSRIs that have short half lives.
Prozac has the longest half life of the SSRIs and is convenient in a liquid to
manipulate doses without new Rxs of different strengths.
However, SSRIs do not make more serotonin. In fact over time, I have read that they can deplete serotonin. This is not what most people expect, but it does happen, because the cycle of release and reuptake is altered by the drugs.
Here is an explanation:
http://www.drkaslow.com/html/neurotransmitter_depletion.html
When you start to read about neurotransmitter status, and the effects of the new drugs we have on the various systems, you will see it is not so cut and dried--easy to fix or understand.
What is true NOW for you, bluebirdy is that your system and the receptors have altered in the presence of the Cymbalta. So you are feeling different, and uncomfortable because of that. Who knows what levels you started at?
I don't think anyone can answer that.
You can improve serotonin synthesis by light therapy, by taking l-tryptophan combined with vitamin B6.
Carbohydrates also increase serotonin in the brain briefly. There is a food/mood connection because carbs allow tryptophan found in protein foods to be absorbed more readily thru the blood brain barrier. Normally amino acids found in protein, block tryptophan at the BBB. A little bit of carbohydrate, 100 cals of candy may help with serotonin synthesis in the brain.
The serotonin in the body (about 90% is NOT in the brain) cannot cross the BBB to the brain. The brain makes its own.
bluebirdy
12-28-2007, 05:22 AM
G - the brain scan is because of the eye movement/tinnitis/brain zaps that are driving me CRAZY. And is why I haven't been able to read all about Cymbalta and hubby has been helping. But would **I** pay for a brain scan if it had to come out of my pocket?? And did this doc's staff even ask me where I wanted to have the MRI before instantly scheduling it in the nearby building?? Oh yeah, we know how that works ...
Mrs. D - l-tryptophan ... sounds like I need to eat a lot of TURKEY? :D I'll check into that and the B6 at the drugstore today
I've said to my husband ... does my body even KNOW how to get back to where it was before ... chemically-speaking? It's sure acting like it doesn't have a clue. Scary.
As for my original reason for wanting off of Cymbalta ... hoping I'd lose weight ... I now have these blood sugar drops throughout the day when I get ravenously hungry! I was never like that before!!! I'm thirsty, I'm hungry, I can't sleep, I'm other things ;) ... it's like every part of my system is in OVERDRIVE :eek: And I'm so jittery. And irritated by everything. This is not ME. Hubby says I've become HIM :eek:
bb
wow wish i had chimed in on this one earler but i had a terrible time coming off effexor very much like what you have said BB i am sorry you have to go thru this , i did laugh a lil bit ( only coz i was identifing) at some of how you staed yourself you seeem very smart and ummmmmmmmmmmmm quik witted the docs should read whats posted here ?????????????? i also signed the petition #471 so there again i am sorry i am up cant sleep and have ect in about 2 hours or so so hope your getting better ,,,,,,,,,, Dave ,,,,aka,,,911
bluebirdy
12-28-2007, 07:56 AM
I haven't gotten around to mentioning this yet, but as a public service it needs to be said ...
A bit of history on this: I was on 60mg Cymbalta. The NP really really wanted me on 120mg all along and I resisted. I finally felt I had to try the higher dose because of her insistence - and found that I couldn't pee!! :eek: Of course it was up to ME to associate the not-being-able-to-pee with the Cymbalta, and either from BT or Googling (it's been a couple of years) I learned that Cymbalta was Rx'd as an incontinence drug in Europe :rolleyes: Of course I was never warned that this could be a s/e. Heck, I bet she didn't even know about this s/e. I had to go back down to 60mg which was fine with me.
Christmas weekend hubby said something really funny, and I just peed in my pants standing in the kitchen. Couldn't stop it either. So this is another "explosive" effect of the drug leaving my system ...
bb
p.s. to 911: the normal me has a pretty good sense of humor which I hope doesn't get lost in the NEW me
BrokenBladder
12-28-2007, 09:29 AM
BB,
I keep coming back to this thread and checking in on you. I'm just so sorry that you're going through this and I hope you improve FAST!! I know what it's like to go through w/d's and it's not fun at all.
Once you get through this you will have your sense of humor back and you will be better than ever!! Many Blessings!!
mrsdoubtfyre
12-28-2007, 11:53 AM
has two actions on neurotransmitters.
1) SSRI serotonin effects
2) SSNI effects on norepinephrine
It is the latter that contributes to urinary retention. Other drugs will also do this. Stimulants like Sudafed, phenylpropanolamine (which was taken of the market for people but is used in animals that are incontinent)
Drugs like Ditropan and Detrol and some newer ones Vesicare etc also help with this but they have different actions on the body.(anticholinergic).
Strattera by Lilly for ADHD also causes urinary retention, since it is a norepi reuptake inhibitor too.
While searching for you bluebirdy, I found patient reports that the opposite can occur too, which is frequent urination. (which is puzzling)
SSRIs and SSNIs have many bodily effects. That is because these neurotransmitters are present in the tissues as well as the brain. In fact up to 90% of serotonin is in the body! Many of the side effects reflect these effects on receptors in the main body.
mrsdoubtfyre
12-28-2007, 12:11 PM
Mrs. D - l-tryptophan ... sounds like I need to eat a lot of TURKEY? :D I'll check into that and the B6 at the drugstore today
bb
Turkey and chicken have about the same tryptophan content. Many protein foods contain it. Turkey gets the credit because historically we eat large holiday meals with turkey (this is changing) and then get sleepy. It is really the potatoes, stuffing, dessert that make you sleepy.
High carb intake with protein, tends to allow the tryptophan in the food to get into the brain more easily. If you decide to try l-tryptophan, take it at night, with a little sweet.(but no protein food) The B6 should not be over 50mg/day.
You can choose a b-complex 50mg and get the whole shebang. But do not take tryptophan if you are still taking a DRUG like Cymbalta or SSRI.
If you are off the drugs, this may quiet and reduce the withdrawal however.
Start slowly with 500mg at bedtime once a day of the tryptophan. Sometimes that is all that is needed.
This is the one I use.
http://www.iherb.com/ProductDetails.aspx?c=1&pid=-7751966008506395828&at=0
Since it came back some places are charging alot of money for it. I find Iherb to be more fair and affordable.
The exaggerated response by the FDA, when the contaminant was found in the Japanese company making tryptophan was politically motivated. Even when the problem was fixed quickly the ban stayed in effect. Tryptophan was still available for animal use. Guess who was instrumental in this suppression?
Yep, it was Lilly, who didn't want competition for the newly released Prozac.
You can read more here:
http://www.backlash.com/content/corp/2004/rodvanmechelen010504.html
This is the main article:
http://www.lef.org/fda/fdaban95.html
There is an excellent book that explains how neurotransmitters change during the day in response to food intake. This difficult subject is very easy to understand in this book:
Food & Mood: The Complete Guide to Eating Well and Feeling Your Best, Second Edition (Paperback) by Elizabeth Somer (Author), Nancy Snyderman (Preface) "What a miracle you are!..."
I bought my copy at a book sale, for $1. But Amazon has it reasonably too.
Make sure you get the 2nd edition, because that is the one with the recent new research into neurotransmitters.
I attended a professional seminar this fall and the nutritionist gave the medical audience this same information to improve pain levels by enhancing serotonin synthesis thru diet.
It is possible to help yourself to some extent. Depending on the severity of your pain, however, there are limits to biological manipulation. I don't take drugs much, but I do use the food connection, tryptophan and light therapy.
Light therapy started for SAD (seasonal affective disorder), which I tend to have in winter, but it really was dynamite for my pain issues. So I use a visor each morning when days are short. My visor is very intense, portable and affective in 1/2 hour time periods. And improves quality of sleep as well.
bluebirdy
12-30-2007, 01:00 PM
I took a nap yesterday AND am just now starting to sleep better - and that is really helping. Ill keep you all posted ... bb
HAPPY NEW YEAR!!
BrokenBladder
12-30-2007, 01:07 PM
BB,
Thank goodness you are starting to get some sleep!! It sounds like you might have made it through the worst part and now things will improve rapidly!!
houghchrst
12-30-2007, 02:20 PM
Birdy I am glad there seems to be some light at the end of the tunnel for you. I know it seemed as though it would never end.
BB,
Just to let you know....It was about the two/three week mark after I stopped the Reglan that I began to feel better....I think better days are ahead for you and you will soon feel better as well....Sleeping is a good sign...
Lil E
12-31-2007, 04:07 AM
Because Paxil was introduced as non-habit forming, when people started having withdrawal problems all hell broke loose. There was a class action lawsuit and they had to pay up and stop saying nhf. One woman was only on it for nine days.
I agree with Mark that there are some people that are helped greatly by SSRI's and scaring people is not helpful. Do some basic research before taking any medication, like reading the insert that comes with it, use google, rxlist.com or webmd. If the amount your doc wants to give you seems excessive, ask for a trial script of a lower dose. The days of just doing what your doctor tells you are over.
Mark N
12-31-2007, 09:23 AM
bb, it is good to hear you are sleeping better once again and like Lisa said you may be over the worst of it now. I will keep my fingers crossed and will keep hoping that you are on the downhill side of the WDs.
BrokenBladder
12-31-2007, 11:29 AM
BB,
I hope you're able to post today and let us know how last night and this morning is going for you. I'm praying for you that this is at the end and you can have your life back.
Don't worry when this is over you will be back to your old self with that same great sense of humor you've always had.:) Many blessings to you!!
bluebirdy
12-31-2007, 02:03 PM
Yesterday was the first day that I felt noticeably better - AND I got a night's sleep! AND took a long nap! I wasn't ravenous, not as jittery ... I truly hoped this thing was on the upswing.
I was wrong.
When I woke up this morning the first thing I thought was - Oh, gee, my back is really hurting. I got up and as soon as I saw hubby I just started screaming out a story to him about a friend whom I'm upset with :eek: I shock myself the way I'm acting. I was fiercely angry and had just gotten out of bed moments before :confused: :mad: :eek: :(
I've been jittery and angry all morning, and have already had a ravenously-hungry spell. Maybe aliens from Mars HAVE invaded my body?? :confused:
Keep praying for me ... hugs, bb
Mark N
12-31-2007, 03:21 PM
bb, are you sure it isn't aliens from Venus:D , sorry you are having a bad day but hopefully it is just the fit and start of kicking the WDs. I hope you get another good night of sleep tonight and wake up feeling better than this morning.
Sara1979
12-31-2007, 04:36 PM
I had the absolute worst, horrible w/d from Cymbalta and that was a slow taper. I was absolutely furious for no reason, was screaming at everyone in a 50 mile radius, was suicidal. I would be sitting there one minute perfectly fine and the next I was so mad I wanted to kick the wall. Totally, totally out of character for me. It really, really screwed with my head and I started to have problems with it before I even started the taper. I was having mood swings like I was possessed. I can't seem to handle any anti-d's they make me an absolute nut job.
I am so sorry you are going through this. Hugs.
bluebirdy
01-02-2008, 11:19 AM
Mark N - I LOL'd ... but thinking about it I may have to stick with MARS esp. since hubby says I'm turning into HIM :p
Sara - I am absolutely NOT me! I'm not acting like myself, these food-cravings and nausea at the thought of other foods is not like myself, being jittery-out-of-my-mind is not like myself. On and on ...
I am sleeping better (though erratically) and for that I'm thankful. But my brain hasn't found its way out of this mess yet ...
bb
Mark N
01-02-2008, 01:06 PM
bb, I want to say welcome to our world [men's world]:D . Sleeping better is progress and it will take time for your body to produce the brain chemicals you need if your body can do that. Hopefully the extra sleep will lead to better results.
bluebirdy
01-02-2008, 05:45 PM
I've got to get help. I can't keep on like this.
I had to be out in the WORLD today, to meet appointments and errands ... and I'm just not functioning. I'm miserable.
Where do I turn to for help since my doctors are either DUMB or PLAYING DUMB??
I DETEST the thought of going back on Cymbalta at this point. Did I mention that I DETEST that thought? But if that is one of the only alternatives left - how will I EVER titrate off when the lowest dose made is a big ol' 20mg ????
Not sure what to do next ... ?? bb
Gimpy
01-02-2008, 05:51 PM
BB: Have you thought that there might be something other than the Cymbalta w/ds going on? I'm torn between diabetes symptoms and thyroid symptoms. I was nuts when my thyroid messed up this time, but the thirst you keep mentioning with hunger makes me wonder if there's a possibility of diabetes. I think it's time to look out side the box before you start taking them again to feel better. The w/d's may have triggered some other reaction in your body that needs to be looked at.
Just a thought, this is most certainly nothing like I've seen out of you before. I really do think it may be something else after this long.
Best of luck,
Linda
Mark N
01-02-2008, 06:13 PM
bb, you are in a tough spot since your doctor isn't willing to consider that your symptoms are WD effects. One advantage of going back on Cymbalta is that it will be clear what the WD effects are because I am wondering if Gimpy is on the right track about some of the effects. If Cymbalta is the culprit for all the effects then you will get some relief and then you can find a doctor that will slowly triate you off of Cymbalta. I hope you are able to solve this soon and if nothing else I would go back on Cymbalta just to triate off it the right way.
bluebirdy
01-02-2008, 08:12 PM
I know it seems like a life-time that you all have been hanging-in-there with me, but I just posted this thread 12 days ago. From everything everyone has been saying, that's well within the timeframe of the weeks or even months that Cymbalta and these other drugs can have this WHAMMO effect ...
Interestingly I had been to the doctors the month before all of this because of my blood pressure soaring - which it never had before. So I just had a lot of tests run that would rule out the usual stuff like thyroid. But this brings up the HIGH BLOOD PRESSURE S/E FROM CYMBALTA. I did not know that Cymbalta can cause high blood pressure until reading that in this thread/links. Neither my PC doc nor my Cardiologist ever mentioned that my Cymbalta could be causing my high blood pressure and I bet they aren't even aware of that. They couldn't find a cause, so they just put me on high bp medicine.
take care everyone ... b
Lil E
01-03-2008, 12:00 AM
Have you tried the ER? If you can explain what's happening they may help. I did that when I had to get off duragesic. They gave me phenergan for the nausea and ativan for the psychological stuff.
bluebirdy
01-03-2008, 11:05 AM
This thing has taken another turn for the worse ... I don't want to post the details for privacy reasons. I did consider going to the ER because of what happened.
I am really scared.
I don't know which doctor to turn to for help since they are all playing dumb. How can they help me?
I'm wondering if I'm going to end up in the hospital ...
I'll try to keep you all posted since you've been so supportive. bb
Mark N
01-03-2008, 12:42 PM
bb, sorry to hear you are doing worse. You need to get some help from some quarter of the medical profession. Have you seen your doctor and told him how severe the feelings are and all that you are going through? See him right away and see what he says about what you are going through. To show you how meds effect us differently, my bp has gone down with Cymbalta as it relieved my pain. With your bp going up before going off of Cymbalta it really starts to make me wonder if something else might be going on along with the wd you are having.
This will end but you need to decide if you can wait for the wd to stop or if you need some relief right now and go back on a low dose of Cymbalta. I still can't believe your doctor put you in such a bad situation by having you stop cold turkey from a 60mg dose. Can you stand to continue and finally be off the med or do you need relief and go back on a low dose of Cymbalta? I hope you are feeling better soon.
BB,
You are in my thoughts and prayers....I would suggest calling a psychiatrist...They are the docs that know the side effects of these drugs and are willing to admit to them...The regular docs do not know these drugs and really should not be messing around prescribing drugs that they do not understand....They should stick to drugs within their specialty...I will say special prayers for you tonight....God Bless...
Gimpy
01-04-2008, 03:23 PM
BB: I hope you went to the ER, I still think it's something besides the Cymbalta because of the length of time. I think something else started at the same time or was triggered by the w/d's. I still keep thinking it sounds like diabetes or thyroid problems. It's really hard to get a dr. to look outside of the box and really step back and exam other things.
Keep us posted!!!!
Linda
Debbie71
01-04-2008, 04:42 PM
BB,
I was originally on Cymbalta for several months and decided that it wasn't helping. I decided I wanted to stop taking it. Per my doctor, I would not have any side effects coming off of. Boy, were they wrong. I actually could not get out of the bed for a few days because I really thought I was going to die. I had electric shocks going through my head, no energy and serious thoughts of suicide. When I told my doc about these effects, he said he had never heard of anyone having these problems. In my opinion, doctors don't investigate these drugs enough before they write them for their patients. I actually work for a doctor and told him about it and he did all but call me crazy. I switched over to Wellbutrin for awhile and now....guess what...I am back on Cymbalta. It is part of my fibro meds. If I happen to forget to take a dose, I get those electric buzzes in my head again. Doctors need to be more aware of these withdrawl effects before prescribing!
I do not think we can clearly say that it is or is not the Cymbalta....We are all different and withdraw from drugs differently...When I stopped the Reglan the docs kept telling me that I should not be feeling the way that I was...unfortunately, I did feel terrible and felt that way for weeks...some of what I felt was self-induced after a while...I realized that because I felt so god awful horrible....but the withdraw from Reglan took me over a month....I took it for over a year...when I was really not supposed to be on it for more than a few weeks...no one was paying attention...especially me...I will not let that happen again....Again, these docs should not be prescribing drugs when they have no clue about how to safely and comfortably withdraw from them ...My heart goes out to BB...I only hope you are feeling better today....I hope you find someone to help you with this withdraw..I at least did have my pcp....She was a blessing...
bluebirdy
01-05-2008, 01:39 PM
I have been back to my prescribing doctor (the one who said he'd never heard of problems going off of Cymbalta) and he was frustratingly, not surprisingly, **no help** :mad: :mad:
Debbie - you know what I'm talking about!
Gimpy - thanks so much for your continued support!
Mark N - you're SO kind to always be there for all of us :-) Oh - and is going back on Cymbalta still a possibility? What a despicable choice but a choice still ...
Mrs. D - I FINALLY finished the NY Times article about the doctor who touted Effexor - an enlightening, awful, thump-upside-the-head for every one of us who is on Rx drugs. A must-read from a practicing physician who was on the "inside".
Do I still believe that what I'm going through is caused by Cymbalta withdrawal? Absolutely. Could other things be going on? Well, I've been to enough doctors to try to find answers and will continue to do that - until I'm better or it kills me.
I stumble onward ... bb
houghchrst
01-05-2008, 01:51 PM
You know Cymbalta was originally advertised as a psych drug that has pain lessening capabilities that can sometimes be an effect of depression and now all these medical doctors who should not be prescribing any kind of psych meds are pushing it on their patients. I can't remember how many times my doc has mentioned me trying Cymbalta and I keep telling him that my psych doc prescribed it for me and it made me sick. I think it is negligent for any doctor to just hand out any kind of psych drug without a thorough study of the possible effects and the poor patients that rely on and trust the doctors with their lives know no better. Not to mention the pharmaceutical reps that push it on the docs with the minimum amount of info. I have learned that as soon as I get a scrip I get on my computer and look for everything I can find. If I have questions or find something the doc never mentioned or info that was wrongly given then I get on the phone and call the office. If I had a dime for every time a doc told me that a SE I was having could not be the cause of a particular med I was taking I would be rich. It really makes me angry. Maybe getting some printouts and taking them with you to visits would be a good practice for us all to start.
Mark N
01-05-2008, 02:21 PM
bb, sorry to hear your doctor is so little help but I know he would be my ex doctor. Yes Cymbalta is still an option if your doctor would give you a 20mg dose prescription. It all depends on whether you can deal with your current state of wd. Personally I would stick with staying off the med but only you know how much suffering you can handle. I hope you are better by Monday as you have to reach some improvement at some point.
bluebirdy
01-06-2008, 12:12 AM
You know Cymbalta was originally advertised as a psych drug that has pain lessening capabilities that can sometimes be an effect of depression and now all these medical doctors who should not be prescribing any kind of psych meds are pushing it on their patients. I can't remember how many times my doc has mentioned me trying Cymbalta and I keep telling him that my psych doc prescribed it for me and it made me sick. I think it is negligent for any doctor to just hand out any kind of psych drug without a thorough study of the possible effects and the poor patients that rely on and trust the doctors with their lives know no better. Not to mention the pharmaceutical reps that push it on the docs with the minimum amount of info. I have learned that as soon as I get a scrip I get on my computer and look for everything I can find. If I have questions or find something the doc never mentioned or info that was wrongly given then I get on the phone and call the office. If I had a dime for every time a doc told me that a SE I was having could not be the cause of a particular med I was taking I would be rich. It really makes me angry. Maybe getting some printouts and taking them with you to visits would be a good practice for us all to start.
Christina - I did make printouts on Cymbalta w/d and took them to my Neuro - to educate him at my appointment AND to put in my file. He did quickly glance through the pages, but I found them tucked back into MY paperwork as I was checking out :mad: I told the check-out-person that I wanted these pages put into my file ... only then did they scan the pages for my file - then handed them back to me. The doctors don't ever want anything you give them - part of that "plausible deniability" thing :cool:
It's been a running joke (!) to me that problems I've reported to my doctors over the years are almost never, ever caused by any of the drugs they prescribe :rolleyes: One NP was a master at this denial/refusal attitude about the drugs she prescribed.
What I'm hearing from a lot of folks at this point is that I'm going to have to see a psychiatrist to get any help for this situation ...
bb
mrsdoubtfyre
01-06-2008, 04:26 AM
If you decide to consult a psychiatrist to fix this problem, call around first
and ask if this particular doctor has experience with antidepressant withdrawal.
Don't go to one without experience.
I believe that the drug companies do NOT warn or train doctors in this, because it would "send a message" that the drugs are dangerous. Some doctors may
be reluctant to use a drug with problematic qualities at all. So this information is guarded and not shared.
What the drug companies DID promote was that the new family of SSRIs was so much safer than tricyclics. I recall a seminar I attended, that was for Prozac and this aspect was stressed heavily. Suicide attempts with Prozac typically fail. But suicide attempts with TCAs like Elavil succeed because of cardiac toxicity. So in general the SSRI/SSNIs are promoted as "safer" to doctors.
How can the drug companies get away with "safer" and then provide withdrawal warnings? You see, that conflict?
I am sorry you are still having problems! I was hoping by now, you'd be
settling down some.
Mark N
01-06-2008, 06:50 AM
I know that my doctors are educated about the meds they prescribe even my current old country doctor. I think it is more about the individual doctors and their reason for being a doctor. Take away all their debts and liability cost [still could lose their license for malpractice but couldn't lose money] and pay them what teachers, firefighters, or the police get paid and see how many would be doctors. I am thinking we would have a doctor shortage but we would find out who is dedicated to healing people. There are doctors out there that are dedicated and have the info or research the info for their patients. They are getting the info someplace so the drug companies aren't very good at hiding it, in fact my Cymbalta has the SE including the danger of going off cold turkey in the package and CVS sends me updates on the issues of stopping Cymbalta without doctor approval. I got these when my gotten my prescription at a different pharmacy out of town so my records didn't show I had gotten my last prescription for Cymbalta. Lots of people are aware of the dangers so I think bb's doctors are just being obtuse.
I think bb is right that her doctors are just seeking plausibly deniability. I am sorry your doctors are so uncaring and unwilling to listen to you as I know my doctors wouldn't treat me that way. I wish you had better options for treatment as I would fire my doctors if I could for treating me that way.
Kathi49
01-06-2008, 09:31 AM
Wow,
After reading all these posts I am definitely concerned about Cymbalta. My Neurologist just prescribed it; I had it filled but then read all of these posts. I had not taken any yet because as Mark alluded to, CVS just in the past few days sent me something like 3 warning letters! They are NOT saying NOT to take it...but they are cautionary letters and really spelling out all of the issues with it. But, at the same time, like Mark is saying, not everyone will react the same way. Basically, what these letters are stating is to be aware of any suidical thoughts, etc., and don't stop cold turkey. But I already knew about alll that since I do research the meds I take...let alone I read every information sheet I get.
Anyway, I took it a couple of years ago or so for about 3-4 weeks. And since I was already having "zapping" and dizziness (coming from my cervical spine) I informed my Neurologist that I just couldn't deal with the ADDED dizziness and nausea from it. So, I went off of it. I suppose she prescribed it again since I have had the two surgeries now.
I am, however, concerned about the urination deal that Mark mentioned his wife had. I already have some "female" issues going on. And that is causing me a bit of grief; just don't won't to add to the problems. So, I will see my Urogynecologist next as a follow up. My point is...I FORGOT to mention those problems to my Neurologist so that is MY fault. We were caught up in the central sensitivity, Central Pain, neuropathy bit at the time. So, I guess I will hold off and wait and see what the Urogyn wants to do...he mentioned surgery the last time I was there. Anyway, that's a totally different and long story. I just want to wait and see if he wants me to do more PT or go forth with repairs. So, maybe it is best I hold off on the Cymbalta for just awhile longer.
bluebirdy
01-06-2008, 11:14 AM
Mrs. D - I'm going to PM you with some details of what my prescribing doctor said to me the other day about all this ... I owe that to you and I KNOW you'll find it a good read ;) :eek: :mad:
I want to mention again that I did not go off of Cymbalta cold turkey. I wanted to do just the opposite - to titrate down very slowly because of what I'd heard about going off of this drug, but we patients don't control the Rx's. Only because of the concerns I expressed did my prescribing doctor hand me some half-dose samples (I wrote about this earlier). So ... that's all I had to go off of this drug. No titrate schedule, a limited number of half-dose capsules, no way to truly titrate down. And there I was ... very concerned but hoping I would be ok.
Kathi - interesting that CVS has sent you cautionary letters about Cymbalta. I haven't received any such letters ... :confused:
Also I want to say this about doctors and pharm companies: Doctors are caught between a rock and a hard place financially these days - who would choose to be one? Pharm companies research and bring us amazing drugs that we all benefit from. Drugs have s/e's and we all know it. We live in an imperfect world. What I am so furious about is this cover-up.
Give me any good BT patient + Google + a drug's IPS = better understanding of a drug and its s/e's than many "medical professionals" seem to know or admit to knowing. What's wrong with that picture??
bb
mrsdoubtfyre
01-06-2008, 02:51 PM
Many people think drug companies like Merck and Lilly are doing research.
The trend today is to license or lease drugs from research facilities like NIH or colleges. The major drug companies today only market them. They make the dosage forms, package, and sell.
Gone or highly downsized are the research labs for most. This does not apply to the specialty
unique companies springing up now that make novel injections.
http://www.citizen.org/congress/reform/drug_industry/r_d/articles.cfm?ID=7909
Industry R&D risks are significantly reduced by taxpayer-funded research: The federal government has helped launch some of the most medically important drugs in recent years and received little, if anything, for its investments. An internal National Institutes of Health document shows that taxpayer-funded scientists conducted 55 percent of the research projects that led to the discovery and development of the top five selling drugs in 1995.
This whole article is very interesting BTW.
BB,
When I went off the Reglan, which was prescribed by my gastroenterologist, he had no clue about how to titrate off the drug...He told me to go from 20 mgs to 5 mgs for five days and then stop the drug...This was after taking the drug for a year. I was fine for for two days and then wow...The panic attacks and anxiety set in big time...I just wanted to crawl outside my skin...I could not stand in the shower without someone being outside the shower...I felt as though I was drowning....We have two sets of stairs in our home...I would walk up one set of stairs and down the other....I could not breathe...When I reported all of this to the gastro...They told me I was on so many other drugs it was from the other drugs...I said baloney...It was from stopping the Reglan too abruptly...and I needed a slower taper...how do I do it...They did not have a clue....They told me to call my pcp and ask her for medication for anxiety...or my PM doc...I called my PM doc...after five or six phone calls the brought me in only to tell me it was a gastro medication and not something they prescribe so they could not help me...I left in tears...I called my pcp...This was now two weeks later....She wanted me to go back on the drug and do a slower taper.......or start Prosaic or Effexor...or take Ativan for the panic attacks and anxiety...In the end I decided to tough it out...I had a friend from BT give me a taper schedule...Her taper schedule was better than the docs...but I just was too afraid to put the drug back into my body...I toughed it out and feel good now...but it has been almost two months I think....I also called the drug company over the course of events...who recommended a slow taper...
I, too, called a crisis hot line...They could not help me because I was not suicidal....or a drug addict...I called a drug clinic that helps drug addict...again not considered a drug addict, so they would not help....It is very, very difficult to get help withdrawing from these drugs...and the docs are ignorant when it comes to doing a taper...I do not know if they really do not know how or if they do not want to take the time out of there very busy schedules to help us....In your case, you can not cut a capsule so I do not know how you would do a taper anyway...but there must be another drug you could switch to to do a taper...I think if you are soon not feeling better I would find a good psychiatrist...
Let's not forget that the docs are given incentives to prescribe these drugs as well....I was at my docs one morning and the drug rep was going to provide a lunch for the docs and staff, but they did not have time since they were off schedule that day...but just look around the office at the tissue boxes, clocks, note pads, pens, etc...and these are just the little things...
I would like to recommend a very good book that my pcp suggested for me...It is called "Feeling Good: The New Mood Therapy" Revised and Updated by David D. Burns David Burns is a psychiatrist and he discusses many different drugs in his book. I have found this book very helpful....He does not push drugs though...Instead he believes most people can learn to feel better without the use of drugs...He says drugs have there place, but many people that are depressed can learn through cognitive therapy to feel better.....There are studies to support his book...etc, etc.etc....
http://ecx.images-amazon.com/images/I/51zpMehw4yL._BO2,204,203,200_PIsitb-dp-500-arrow,TopRight,45,-64_OU01_AA240_SH20_.jpg http://www.amazon.com/Feeling-Good-Therapy-Revised-Updated/dp/0380810336/ref=bxgy_cc_b_img_a
There is a workbook that goes along with the book as well...
The Feeling Good Handbook (Paperback) http://www.amazon.com/Feeling-Good-Handbook-David-Burns/dp/0452281326/ref=pd_sim_b_img_1
by David D. Burns (Author)
http://ecx.images-amazon.com/images/I/51DEZ9JGT6L._BO2,204,203,200_PIsitb-dp-500-arrow,TopRight,45,-64_OU01_AA240_SH20_.jpg
Sara1979
01-06-2008, 07:15 PM
I am so sorry you are still feeling badly. I agree with what a PP said about them giving out meds w/o knowing the full impact. I also think they do this to avoid narcotic therapy. The most ironic thing is I tried all the off-label Anti'Ds, Seizure Meds, etc and they all had the most horrific side effects. I went on Oxy and after a week absolutely no side effects just less pain.
OP, I really hope you start to feel better soon.
mrsdoubtfyre
01-06-2008, 08:04 PM
At Cafepharma the reps for Pfizer are bemoaning the fact that horrible news
regarding new horrors of Chantix are coming to light...and that they were never told by the company at all... and they know Pfizer knew: So they could not warn doctors about mixing Chantix with SSRIs and/or alcohol.
http://www.cafepharma.com/boards/showthread.php?t=240562
beware: sometimes strong language is typically common over there.
houghchrst
01-06-2008, 08:47 PM
Yes I get the inserts from my pharmacy with all my meds and they all list the minor and major side effects. I have reported serious headaches, depression, suicidal feelings, flu like feelings, uncontrollable serious dizziness all at different times for different meds as some of the very worst side effects and had docs tell me that it couldn't be caused by the med despite the fact that the insert says it could.
bluebirdy
01-07-2008, 06:00 AM
GJZH - you're right - it's a bunch of baloney - and worse :mad: Sorry what you went through, and it sounds SO familiar to me right now! Just maddening ... :mad: :mad: :mad:
Mrs. D - I searched on 'Cymbalta' on the CafePharma board .... and it again was very interesting. (I've never run into a forum that is so vulgar - what is it about pharm reps?)
About who is doing the drug research: you're right of course. I guess I've read that the government (i.e. our taxes) are doing so much of the drug research these days, so I misspoke. Which brings us to a whole 'nother discussion about why drugs then are so laughably expensive. But let's not go there for now.
I have more doctors to see, more tests to have done ... this is RIDICULOUS.
bb
bluebirdy
01-07-2008, 06:07 AM
I'm aware that you can complain about a drug to the FDA online. But in looking at that website I cannot find any info on what happens to your complaint? Is complaining to the FDA to MY benefit? Or a way for the FDA to keep track of complainers? or is the info forwarded to the drug companies? or??
When I called the pharm company about my h*ll going off of Cymbalta, I mentioned to them that I might complain to the FDA. I could hear the uneasiness in the woman's voice as she told me I had every right to do that BUT she assured me that it would be redundant for me to contact the FDA because I had already notified them (the pharm company) :confused: :rolleyes: :cool:
bb
This is directly from the prescribing information from Cymbalta (from the drug manufacturer). If your doctor &/or pharmacist does not believe you that you are having "discontinuation" (WITHDRAWAL) symptoms, politely refer them to the prescribing info that comes with each bottle of the drug. It is online at http://www.rxlist.com/cgi/generic/cymbalta_ids.htm and they can also find it in their own PDRs (Physicians' Desk Reference) or on ePocrates on their little PDAs.
Discontinuing Cymbalta
Symptoms associated with discontinuation of Cymbalta and other SSRIs and SNRIs have been reported (see PRECAUTIONS (http://www.rxlist.com/cgi/generic/cymbalta_wcp.htm#P)). Patients should be monitored for these symptoms when discontinuing treatment. A gradual reduction in the dose rather than abrupt cessation is recommended whenever possible. If intolerable symptoms occur following a decrease in the dose or upon discontinuation of treatment, then resuming the previously prescribed dose may be considered. Subsequently, the physician may continue decreasing the dose but at a more gradual rate.
This is also from the prescribing information for Cymbalta, in greater detail. The prescribing information comes from Eli Lilly, though I looked it up on rxlist.com. Here is the URL for the quoted text in this post: http://www.rxlist.com/cgi/generic/cymbalta_wcp.htm#P
This "discontinuation syndrome" is very real. I experienced it BADLY when I stopped Celexa cold turkey in 2004.
Now I am in the process of tapering off of Effexor, and because my psychiatrist knows about SSRI/SNRI withdrawal, we are tapering SLOWLY and watching out for any signs of withdrawal. We are doing it gradually and I have had pretty much NO symptoms of withdrawal this time. The key is to acknowledge that this withdrawal exists, to look out for it, and to gently wean your body off of the med.
Doctors should either know about a med or be willing to look it up and read about it BEFORE prescribing it.
PLEASE print out the prescribing info, highlight the parts that acknowledge the existence of "discontinuation syndrome," and give copies to your doctor and your pharmacist. Otherwise, they will just make the same mistake again with another patient.
Discontinuation of Treatment with Cymbalta — Discontinuation symptoms have been systematically evaluated in patients taking duloxetine. Following abrupt discontinuation in placebo-controlled clinical trials, the following symptoms occurred at a rate greater than or equal to 1% and at a significantly higher rate in duloxetine-treated patients compared to those discontinuing from placebo: dizziness (http://www.rxlist.com/script/main/art.asp?articlekey=6114); nausea; headache; paresthesia (http://www.rxlist.com/script/main/art.asp?articlekey=4780); vomiting; irritability; nightmares; insomnia; diarrhea; anxiety; hyperhidrosis (http://www.rxlist.com/script/main/art.asp?articlekey=16272); and vertigo (http://www.rxlist.com/script/main/art.asp?articlekey=6129).
During marketing of other SSRIs and SNRIs (serotonin and norepinephrine reuptake inhibitors), there have been spontaneous reports of adverse events occurring upon discontinuation of these drugs, particularly when abrupt, including the following: dysphoric mood, irritability, agitation, dizziness, sensory (http://www.rxlist.com/script/main/art.asp?articlekey=15733) disturbances (e.g., paresthesias such as electric shock sensations), anxiety, confusion, headache, lethargy (http://www.rxlist.com/script/main/art.asp?articlekey=4138), emotional lability, insomnia, hypomania, tinnitus (http://www.rxlist.com/script/main/art.asp?articlekey=5799), and seizures. Although these events are generally self-limiting, some have been reported to be severe.
Patients should be monitored for these symptoms when discontinuing treatment with Cymbalta. A gradual reduction in the dose rather than abrupt cessation is recommended whenever possible. If intolerable symptoms occur following a decrease in the dose or upon discontinuation of treatment, then resuming the previously prescribed dose may be considered. Subsequently, the physician may continue decreasing the dose but at a more gradual rate (see DOSAGE AND ADMINISTRATION (http://www.rxlist.com/cgi/generic/cymbalta_ids.htm#D)).
Mark N
01-07-2008, 07:41 AM
Kira, thank you for bringing some reality into this discussion. BB I know you are suffering but the info has been out there for years and my doctors have been aware of it.
Mrs D, you are wrong about the drug companies not running trials on their meds as I know Lily works hand in hand with IU medical hospital/school on their trials. The companies do the initial trials and have to present them to the FDA before the FDA runs its own investigation. Like I said before , I have no connection with Lily other than living in the state and in Indy where I readed newspaper articles about Lily's trials for new meds.
I have been trying to be as nice as I can because I know BB is suffering but there has been alot of misinformation on this thread. From the beginning when I started Cymbalta five years ago, when it was first approved for neuropathic pain, I was made aware of possible SE and the need to not go off of it cold turkey [BB I know it was your doctor that caused this for you]. Not only did my doctor make me aware of these issues by the literature with the med did [I read those things because I need to know what I am taking] and my pharmacy gave me a print out with the info along with any time their records showed I hadn't picked up my last prescription. In fact I was getting irritated with the letters I got every month from CVS about the danger of stopping Cymbalta cold turkey.
BB, I am very sorry you are suffering and that your medical support has fallen down on the job. The info is out there for them to know all about the SE and WD of Cymbalta and they should know about the risk if they are prescribing it to their patients.
mrsdoubtfyre
01-07-2008, 04:56 PM
Mrs D, you are wrong about the drug companies not running trials on their meds as I know Lily works hand in hand with IU medical hospital/school on their trials. The companies do the initial trials and have to present them to the FDA before the FDA runs its own investigation. Like I said before , I have no connection with Lily other than living in the state and in Indy where I readed newspaper articles about Lily's trials for new meds.
.
This is a misunderstanding on your part, Mark. I never said they don't run trials, I said they don't TELL doctors about all of them. The negative ones.
In fact one of the papers I quoted early in this thread is from Lilly.
Drug companies also run studies that are slanted and designed to show them in good light. Picking subjects whom they feel will show good results.
This was done with Concerta -- and was publicized heavily.
Source: AlterNet, November 29, 2004
"A few individuals in government expressing concern can't equal the marketing power of large companies," said a former U.S. Drug Enforcement Agency official, regarding stimulants prescribed for children with "attention deficit hyperactivity disorder" (ADHD). Leading ADHD researcher Dr. William Pelham says McNeil Pharmaceuticals, which manufactures the stimulant Concerta, uses "misleading" marketing campaigns and has pressured Pelham to "water down" his writing. An ADHD advocacy group that receives pharmaceutical industry funding, Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD), heavily edited an interview with Pelham in its magazine. Pelham says the incident exposed "major and undisclosed conflicts of interest with the pharmaceutical companies"; CHADD says they only removed "unsubstantiated claims."
from http://www.prwatch.org/spin/2004/11
You can Google Dr. Pelham and read more details if interested.
What drug companies do do, is pay doctors for their names for papers, when those doctors did not do the trial at all. This is called ghostwriting, and was discovered, about 3 yrs ago when a doctor who refused to comply, saw his name anyway on the paper he refused to lend his name to. It was found that this happens more often than people would like to think.
http://www.cbc.ca/consumers/market/files/health/ghostwriting/faq.html
In fact the drug companies were hiding so many studies that were negative, and got caught doing so~~~
http://www.ahrp.org/infomail/04/06/05.php
Oh, the drug companies know plenty, it is just they choose not to tell, if it is going to impact sales. The Vioxx issue is only one example.
And Yes, Bluebirdy, those sales reps over there behave very unprofessionally.
But that is what the drug companies want... those types will do what they are told without question (all they want is their bonus) They don't even know "what" to question...LOL
bluebirdy
01-07-2008, 05:57 PM
Since this Cymbalta thing is making me mean and aggressive, I'm going to use it to my advantage while it lasts. Here's the new me:
1) I refused the contrast on an MRI
The Cymbalta w/d s/e's have caused me to have another MRI - with the aggravation and expense. Interesting that the MRI paperwork includes a whole page devoted to authorization to have the contrast - with nowhere on the page to REFUSE said contrast. :rolleyes: I'm sure my doc will be p*ssed that I refused it - tough.
2) I drilled the MRI folks about whether my doctor has a financial interest in that MRI facility.
At first they tried to tell me that it's against the law for doctors to have a financial interest. :mad: :rolleyes: When I showed extreme skepticism at THAT answer, they then said my specific doctor had no interest in the facility - and no other doctors either. When I then told them how his office had quickly scheduled me for their facility without asking for my input as to where I 'd like to go ... and that I suspect my other doctors have had financial interests in MRI facilities they send me to - they then said that - oh, that USED to happen but doesn't happen anymore. I just felt so warm & fuzzy with their answer.
3) I'm changing pharmacies
Since the HEAD PHARMACIST at my pharmacy that starts with "C" claimed to have NO knowledge of Cymbalta w/d problems, I am going to go to the pharmacy across the street from them that starts with "W" and meet with their Head Pharmacist. If their Head Pharmacist shows a working knowledge of this nightmare - I am going to have all of our scripts ripped right out of our "C" pharmacy of many many years - like yanking rotten teeth.
bb
Mark N
01-07-2008, 05:59 PM
Mrs D, sorry I misunderstood your point. I do know that they have to report all aspects of their studies to the FDA including the negative. The Indy Star got the info about SE from the company when they were reporting on new meds Lily was putting on the market so it is out there to find.
Sales reps are like car salesmen or any other sales person. They emphasize the positive and offer incentives for the doctors and staff. Lily uses people with a pharmacist degree to be their sales reps so they know about the meds they are pushing for sales. The big problem I am seeing with this issue are doctors that push meds without having all the info they should. After all, there are dentist that prescribe Oxycontin for pain control following dental work and doctors that prescribe it for a sprained ankle[ this is from past Indy Star articles]. There are too many lazy professionals not doing the work they should be doing and it makes me very happy with the doctors I have had.
BB, how are you feeling today, better I hope.
mrsdoubtfyre
01-07-2008, 07:19 PM
how do you know Lilly uses pharmacists?
It is my understanding that this was discontinued many years ago.
Most sales reps are business grads. I have seen two physical therapists,
both male, who worked for Pfizer.
I have NEVER seen an RX from a dentist for oxy.... never.
Percocet/Percodan, yes. In fact my son was given Percodan, and I wouldn't let him take a whole one. We broke them in half, and that was plenty for his 4 wisdom teeth extraction and surgery. He only needed two doses, and he was then satisfied with naproxen and ice pak.
I had a root canal from he[[ and only used T3 for one day, and naproxen the next.
I suppose if you have ALL teeth removed, you might get more than Percocet, but I have never seen that!
Edit...here are some stats on pharmacists at Lilly:
http://findarticles.com/p/articles/mi_qa3899/is_200010/ai_n8918570/pg_3
There are not that many. (this is from 2000.) I suspect that 7% is less today. Just my opinion.
Mark N
01-07-2008, 08:04 PM
Mrs D, I had several friends that were recruited out of school with pharmacy degrees and when I was working at a school in Indy a couple of years ago I knew Lily executives and they were still hiring pharmacist as their sales reps, they tried to get my SIL. Maybe it has changed now but I have no reason to believe they have changed policy.
The RX of Oxy for a dental extraction came out of an investigation in Ky by the state for the illegal use of Oxy. I was shocked at the number of acute short term pain patients that were prescribe Oxy in the Kentucky by dentist as well as doctors in the investigation the state ran. Another source of info was an investigation WV ran but I know the one in KY better because I now live on the Ohio River across from KY.
BB, good for you. The use of contrast is now being used in class action lawsuit although I haven't had a problem with contrast when it has been used. I am glad you changed pharmacy with the poor performance of the one you have been using. I also have to wonder if doctors have quit having a financial interest in imagining centers.
mrsdoubtfyre
01-07-2008, 08:25 PM
no wonder.
Kentucky has PROBLEMS! I don't think Kentucky is representative of the rest of the Nation.
I put up a post on CafePharma to the Lilly sales force. Let's see if I get any
real responses or just flamed. "How many of you are pharmacists"?
Nothing yet....only 4 views.
Hiring in at the home front, makes some sense. But I don't expect to find
many in other states.
In my day ALL reps were pharmacists or doctors. I haven't seen a pharmacist rep in over 20+ years!
mrsdoubtfyre
01-08-2008, 09:40 AM
regarding pharmacists and sales:
http://www.cafepharma.com/boards/showthread.php?t=248581
So far they are civil... I am stunned at that.
But the general consensus is anyone with less than 15yrs they are not. There are some few left in higher positions, with seniority.
That is what I was thinking too. Overnight I did recall one pharmacist rep, from about 10 yrs ago. She was with Glaxo, and was quitting. I only saw her twice. She was Miss Zantac then.
Today with the pharmacist shortage, drug reps make less $$ than pharmacists.
Also the increased difficulty of the program has weeded out the "sales" types.
It takes alot of brainpower to pass the 6yr program and boards. This tends to select for intellectual types, and drug companies are hiring flashy types, young good looking, highly dressed and more superficial. Business majors, mostly.
Gimpy
01-08-2008, 12:40 PM
My neice is a pharm. rep and she has a business degree. No special medical training needed other than to learn about the product she's peddeling. Beautiful, looks good in business attire and can sweet talk anybody into anything. She makes an excellent income too.
G
bluebirdy
01-09-2008, 10:25 AM
I am starting to feel like my old self, although I'm still on the mean side :D
The nausea/tinnitis/eye thing is the worst s/e and it's not subsiding.
Thanks especially to Mrs. D., Mark N., Gimpy ... but to each and EVERY one of you who has come here to offer support to me. This has really been a very very tough few weeks. It's not over but at least I'm getting out of the house now and doing some things OTHER than going to doctors :rolleyes: .
If you all lived near me, I would invite each person who responded to this thread to meet at Starbucks (or wherever), have something nice to drink, and give each other a big hug :)
love & hugs, bluebirdy
Mark N
01-09-2008, 10:27 AM
bb, you are starting to sound like your old self and I hope the remaining symptoms recede soon so you can be done with the WDs. I will be keeping my fingers crossed for you hoping you continue to feel better each day.
mrsdoubtfyre
01-09-2008, 11:55 AM
You know the WEATHER has just been horrible for pain people this week!
I am having issues, and so do some of my friends with PN. When those LOWS sweep in it seems to make everything worse for some reason!
Thanks for the cyberhug... I love those!
Gimpy
01-09-2008, 04:07 PM
I'll take you up on that drink some day! I'll let you know when I'm on my way...... lol
Thanks for the Xmas card too, I didn't send them this year, it was all I could do to get the tree up. I don't know how you did feeling as poorly as you did!
Big ole' hugs, Linda
bluebirdy
01-09-2008, 04:26 PM
Yeah, we've got a change in weather on the way here as well ... My normal spine pain has taken a backseat to all this other stuff. I expect it to come screaming back very soon as the other stuff recedes more.
Gimpy - I'm looking forward to you showing up one day ;) As for the Christmas cards - they were written at the 11th hour as you know, in an hour-and-a-half marathon session! I didn't carefully update and print out my Christmas Card Address List as I do every year, didn't mark down each card as I wrote it, and am not even sure whom I sent them to or whom I missed :rolleyes: But at least I got some out there.
I'm about pooped for the day, and the tinnitis is driving me nuts (close-up work makes it worse), so headed to bed with my faithful puppettes. Everyone take care, bb
mrsdoubtfyre
01-09-2008, 05:37 PM
I found some interesting YouTubes on Cymbalta:
http://youtube.com/watch?v=3KdtaFmDTA0
I've sort of lost track, since this thread is so long now!
Please excuse me if this has already been posted!
Sorry this is a long video.
Ex Lilly exec. talks:
http://www.talk.pharma-mkting.com/show038.htm
Pet dog sings/howls to Cymbalta commercial:
http://youtube.com/watch?v=3x1OEaFD2Es&feature=related
This is VERY funny!
bluebirdy
01-10-2008, 12:42 PM
Let's take 'em in reverse order. That dog howling is a hoot!! Should I have video'd MY lap dog howling over the keyboard in front of the screen at that dog howling at the Cymbalta commercial?? :D
The Cymbalta exec ... would love to read his book. Would have to be on AUDIO right now since my eyes/dizziness is driving me nuts. So it was good to be able to LISTEN to this one. And he worked mostly for the same pharma so that's extra-informative.
And the first one - the first-hand account of Cymbalta w/d. Hubby had already found this on YouTube and tried to play it for me one night but it wouldn't play. Maybe the Net or our ISP was too busy or something. Anyway, I'm SO GLAD you posted it again and I had no trouble playing it today. What should be noted is that this young woman finally went to her doctor for relief from 6 weeks of a stabbing headache. She hoped for some pain medication but NOOOOO, the doctors are SO afraid of pain meds :rolleyes: The only thing her doctor offered her - for a HEADACHE mind you - was ... Cymbalta :mad: After 6 weeks of stabbing pain she took it. This shows how we are at the mercy of our doctors and what they prescribe or won't prescribe. She wasn't on Cymbalta long, and it took her from March to May/June to get off of it ... with terrible s/e's of shakiness, dizziness and irritability. One humorous part was her saying that her irritability was so bad that her young son made HER a "behavior chart"! Boy, can I relate to that.
bb
I found some interesting YouTubes on Cymbalta:
http://youtube.com/watch?v=3KdtaFmDTA0
I've sort of lost track, since this thread is so long now!
Please excuse me if this has already been posted!
Sorry this is a long video.
Ex Lilly exec. talks:
http://www.talk.pharma-mkting.com/show038.htm
Pet dog sings/howls to Cymbalta commercial:
http://youtube.com/watch?v=3x1OEaFD2Es&feature=related
This is VERY funny!
KristiSki
01-10-2008, 04:35 PM
:eek: It was not a mistake that I happened to come on to this forum today. Cymbalta is a "very" tricky drug. This I am learning. My NS wanted me to double my dose before surgery, and I'm lucky I didn't. And to hear that some of you had weight gain while on this drug, hit me like a ton of bricks. I am curious just how much weight we are talking here. Both you, Bluebirdy and Mark N stated they had weight gain. I have gained so much weight and not once did I contribute it to this drug. Nearly 2 years ago I quit smoking, which I've done several times in the past and I never put on more than 5-10 lbs. This time were talking 50 lbs. Another factor I believed to be involved was that I am not as physical as I once was. Then there's my thyroid, which is totally under control, so I'm sure it's not because of that. Now I believe the weight gain is due to this ever so bad word, Cymbalta.
Originally, I was put on Cymbalta for nerve pain which I have in my legs due to herniated discs in my lower back causing sciatica. I still have pain, but not as bad. This is why my NS wanted to increase my dose. Honestly, the reason I did not increase the dose is because I could not afford more money for my rx's.
To touch on the withdrawls. Oh boy... I swear I will never run out of this drug again. And now, I'm interested in trying a replacement drug, but how to titrate??? I had missed taking my daily dose by 2 days. That's 48 hrs. By mid-day on the 2nd day, I began to feel totally out of sorts. Racing heart, sweating profusely, headache, and body ache, I could barely walk. I also remember being very frustrated and was irritated very easily. So, when it comes time for me to get off this drug, I know I will have to be good and ready - that's for sure! And... I think I'll get my family earmuffs, or send them away for a week.
Bluebirdy, I'm so sorry you are having to go through this horrible time. But if you could, look for just a moment, at how many people have read your post People who are more aware of it and its side affects and its withdrawl symptoms, I'm sure you have helped so many, including me. I would have otherwise, possibley never have learned of this. And for that, I thank you. ;)
Appreciative in Kingman,
Kristi :)
Mark N
01-11-2008, 12:12 AM
Swen, welcome to the site and I hope you can find more info to help you. Jump in any time you want as the people here are kind and welcome new members.
Kristi, I have gained about 35 pounds that doesn't change very much based on what I eat or drink. Part of the weight gain is the gnawing in my stomach if I don't eat very often. I really don't eat meals any more but eat good foods a little bit all day.
BB, I hope you are continuing to do better and your eyes get better before too long.
Hope things are going better for you with the withdrawals.
As I posted in the beginning of this thread, I'm tapering off of Effexor right now, which is very similar (has both SSRI and SNRI properties, like Cymbalta). So far I have had very minimal trouble with it, which I am very grateful for. Luckily, my psychiatrist is definitely aware of the possibility for withdrawal, so we are deliberately being very gradual with my taper. I was dreading the withdrawal feelings, since I had really bad withdrawal symptoms when I stopped Celexa cold turkey in 2004. The taper seems to be working, though.
I have an appointment with my psychiatrist tomorrow, and I bet we are going to decrease it again. Right now I am at 37.5, which is the lowest dose for the XR capsules. So, to make any further decreases, we will have to switch to the plain old Effexor (instead of Effexor XR). The other option my shrink offered was to replace it with a different SSRI altogether for the taper, so that we could go down in smaller increments. So, I am curious what he will want to do.
Anyway, hang in there. And next time you see your doctor and/or that pharmacist, PLEASE bring them a copy of the prescribing info for Cymbalta that admits to the existence of a "discontinuation syndrome." It makes me so frustrated that they STILL deny the existence of SSRI withdrawal, even after the drug companies had to add it to the prescribing info. When I had problems with it in 2004 from stopping the Celexa so abruptly, I ended up in the ER talking to a psych resident who acted like there was no such thing as withdrawal from SSRIs. I actually ended up going back on the Celexa just to make it stop and let me get back to my life.
SSRI withdrawal is so weird. The mood issues sort of make sense, but the electric zap sensations in your head & down your back are REALLY bizarre.
Anyway, hang in there... it can't last forever... right?
norcalmom
01-11-2008, 07:18 AM
I was on cymbalta as well, and my pm doc went on vac and non of his covering doc would write an rx for cymbalta. I called my pcp and he told me only my pm doc can write me the rx. This med is not a narcotic and they all knew I was out of them. The nurse told me at the pm clinic no one has ever withdrew from cymbalta stopping cold turkey. MY doc was out for two weeks and when he returned I told him all the symptoms I had he told me normally people wouldnt have side effects but the strenth I was on it is possible. He felt the front desk...the nurses were trying to handle it without getting any of the other doc involved. I had everything from forgetting things more than usual and falling down alot. I felt like a ping pong ball being bounced around because no one wanted to take the responsibility. I know alot of the docs he worked with did not like covering for him because he was gone so much from one facility to another or just on his usual vacation.
Mark N
01-11-2008, 07:30 AM
norcalmom, with all the documentation provided by Lilly and others it is frustrating that doctors and nurses don't think there are any wd effects from stopping the medication. If I have educated myself because I take Cymbalta surely the doctors that prescribe it can do the same:( . I am sorry you had to go through this because your doctor was on vacation and other doctors shouldn't be bothered to take care of you in his absence.
I am very sorry for all the problems that so many of you are experiencing now or have experienced with Cymbalta. I remember posting at one time that I had not experienced any weight gain while on this med, however back in late August I had alot of medicine changes and came off of all but five on a daily basis for a short time, Cymbalta was one of the ones that I stayed on and my dosage was decreased from 120 mg a day to 60 mg a day.
Well during the month of September I gained 25 lbs and it has moved in to stay. Mark mentioned his weight increase being pretty much no matter what he ate or drank and mine is the same way. The needle stays within about a two pound margin no matter what.
The bad news was that I already needed to lose weight so that extra 25 is a real problem.
Anyway....
The other thing I wanted to mention is that I did not have any withdrawals that I recall from the dosage decrease and it was an immediate change. I had been on Cymbalta for at least two years at that point so it was definitely in my system. Does anyone else have my experience of not having problems decreasing your dosage quickly? Just curious...... A.K.
bluebirdy
01-11-2008, 10:34 PM
I"ve just been in a RAGE tonight :mad: :mad: :mad: It seems that when I think I'm doing better emotionally it's only because I'm not around people that much - you all know what it's like to be home all the time.
RAGE RAGE RAGE - with FOUL LANGUAGE. OHHHHH, do I like very bad language these days :mad: :eek:
I'm having terrible spine pain today so that is overloading my Cymbalta w/d synapses I guess :(
And my eyes/tinnitis/brain zap thingy is driving me nuts so I really have to get off of the computer and head to bed.
will keep you all posted ... bb
p.s. Kristi - thank you for your note - it means a lot ;)
Mark N
01-11-2008, 11:51 PM
AK I haven't had any problem dropping my Cymbalta from the 60 mg I take to
30 mg nor do I have any problems if I try to reduce my levels by stretching out my doses, I know it isn't recommended. I haven't tried to go completely off of it but I haven't had problems reducing it other than my pain increases.
BB, sorry you are having the rages again. I hope you have a husband that can handle it knowing it isn't you but the wd effects.
suede
01-12-2008, 02:27 AM
BB,
I'm ashamed of myself for not posting to this thread sooner, I want you to know I have been following and my heart ached for you, I keep trying to think of something to help and I'm empty.
Like Mark I have no problems with it, I go up and down with it and have even tapered off myself before to see if I could do without it but my nerve pain increased something awful.
Please know even though I have not been supportive in post you have been in my thoughts and I wish you the best and for help soon.
Gentle hugs,
Linda
houghchrst
01-12-2008, 03:28 PM
Oh my there are so many posts here that I have completely lost a lot of what was said due to the ole noggin not working so well. Do you see anyone in the mental health community? Maybe you should see a psychiatrist who is well aware of how cymbalta works and can maybe prescribe you something that will help you with the withdrawls. I know it seems as though you will be just trading one drug for another but at least you will be monitored by someone who knows what they are doing when it comes to those types of meds and then can help you titrate down whatever you take to help with this. At this point I would try anything. I really hope this gets better for you soon.
KristiSki
01-14-2008, 03:35 PM
Hi there norcalmom, I can totally relate. I wanted to let you know with me, I called my pharmacy, (Walmart) and because I am a regular on this drug there, they were kind enough to give me two days worth. If this were to ever happen to you again, try calling your pharmacy and see if they would be willing to give you some to get you by until you see your PM.
:) Kristi
I was on cymbalta as well, and my pm doc went on vac and non of his covering doc would write an rx for cymbalta. I called my pcp and he told me only my pm doc can write me the rx. This med is not a narcotic and they all knew I was out of them. The nurse told me at the pm clinic no one has ever withdrew from cymbalta stopping cold turkey. MY doc was out for two weeks and when he returned I told him all the symptoms I had he told me normally people wouldnt have side effects but the strenth I was on it is possible. He felt the front desk...the nurses were trying to handle it without getting any of the other doc involved. I had everything from forgetting things more than usual and falling down alot. I felt like a ping pong ball being bounced around because no one wanted to take the responsibility. I know alot of the docs he worked with did not like covering for him because he was gone so much from one facility to another or just on his usual vacation.
Peter B
01-15-2008, 10:58 AM
Kristi,
while I completely understand that your pharmacist was being compassionate what, he/she did is completely illegal. The pharm could lose their license for doing that.
Pete
bluebirdy
01-15-2008, 01:07 PM
The other thing I wanted to mention is that I did not have any withdrawals that I recall from the dosage decrease and it was an immediate change. I had been on Cymbalta for at least two years at that point so it was definitely in my system. Does anyone else have my experience of not having problems decreasing your dosage quickly? Just curious...... A.K.
As I have written, I had my dosage increased up to 120mg (that's when I couldn't pee), so came back down to 60mg again. No withdrawal problems then. And when I dropped to the half-dose samples of 30mg I had no problems. It was only after I stopped taking it altogether ...
bb
bluebirdy
01-15-2008, 01:16 PM
I feel like there's no answer to this. Other than going back on this ugly drug?
I have a follow-up appt. with my Neuro soon ... and I bet he's going to try to get me back on it. Yet from what little he has said I think he's totally dumb about Cymbalta like all the others. He's the one that I took the printouts to at my other appointment in hopes of educating him ... he glanced through them and gave them back to me.
bb
p.s. how in the world would I find a doctor (even a psych.) who is very familiar with Cymbalta's s/e's? I even e'd that NY Times article doc because he's still in practice ... for a referral ... but never heard back from him
KristiSki
01-15-2008, 03:17 PM
Kristi,
while I completely understand that your pharmacist was being compassionate what, he/she did is completely illegal. The pharm could lose their license for doing that.
Pete
Okay, it's illegal. Am I going to be the one to report them? If this is a drug that I've been taking for years and the same pharmacy gave them to me, I would conclude because my refill had already been called in, they knew it would be coming and gave me this supply until my rx arrived. If they were to loose their license over this, that would just be a shame. Compassionate, maybe - proactive, probably.
Thanks for the info.
mrsdoubtfyre
01-15-2008, 05:59 PM
Kristi,
while I completely understand that your pharmacist was being compassionate what, he/she did is completely illegal. The pharm could lose their license for doing that.
Pete
With all due respect...it is not illegal to advance a couple of caps of something without charge, if the pharmacist is intending to get an approval later. In fact most state's laws state it is only illegal to SELL.
If an good faith effort is made to provide a patient with medication in a bind, and those advanced meds are subtracted from a precription that follows shortly thereafter, it is NOT illegal.
I find advancing controls however, a different ball of wax. And CIIs NEVER.
Where controls like Klonopin are involved which will cause seizure on cold turkey, that is a very gray area. Since Klonopin is not forged often, it is often allowed an advance too. But things that get forged often are excluded by most pharmacists I know.
I find advancing Cymbalta to a patient in a bind a typical reaction by most pharmacists. And not illegal. Only if MONEY changes hands without an RX then it becomes a problem. And who is going to report this? Nobody!
Diandra
01-17-2008, 06:21 PM
Hi Bluebirdy,
I think you will be interested to know that today my doc newly scripted me Cymbalta. Because of your experience, I asked about the side effects; he did bring up the fact that it can cause "serotonin withdrawal syndrome" which sometimes can be hard to deal with. I said, when I get off do I have to get off slowly and he said yes.
So sorry for your awful problems but, I do appreciate that you enlightened us all. I really hope you are much better today.
Diandra
houghchrst
01-17-2008, 06:28 PM
I have gotten advances of Ambien CR and Xanax from my pharmacy, usually only like 3 or 4. They know me well and it is usually while waiting for someone in the office to get around to finish taking care of the prior authorization process.
Peter B
01-18-2008, 02:31 AM
Mrs Doubtfyre,
I stand corrected.
Pete
PS My pharmacist has helped me out on occasion.
shelley2
01-18-2008, 04:48 AM
hello, i know quite alot about drug withdrawal syndromes. Even though im going through it myself i have learnt alot through my journey ie what foods can aggravate symptoms etc so if you need any advise please pm me or ask on my thread. Hope your feeling better.Shelley.xx
shelley2
01-18-2008, 01:22 PM
hello, i have just read this thread with great interest and all I can say is WELCOME TO MY WORLD! for those of you who have suffered from withdrawal issues of any kind.
Ive spoken to 2 neurologists, 7 doctors, about 10 pharmacists and a host of other health professionals who all tell me BACLOFEN doesnt have a withdrawal syndrome...because they dont google it do they???
Its only now that two doctos and a neurologist have relaised that I am suffering from withdrawal syndrome and CENTRAL NERVOUS SYSTEM MALFUNCTION due to abrupt withdrawal of baclofen. Ive had a list of withdrawal symptoms that have been so hard to deal with(see my blog if your curious) and thought I was going to die etc etc
Now 5 months of baclofen and some things have started to improve but i still have
GI issues (difficulty digesting food)
my urine has changed colour and sometimes runs clear even without drinking anything all day.
doom and gloom thoughts
my muscles have not gone back to normal ie they are in spasm
my jaw has moved into another position..(dont ask me why)
Ive noticed a bit of weight loss in the last few days and will monitor this.
Strange sensations inside my body.
Hope things improve for you and anyone who is suffering from withdrawal. All i keep hearing is that withdrawal syndromes do go with time so guess I have to be patient. If anyone has similar experiences, especially with the GI issues and urine issues can you please let me know and how long it took for yours to go.
Many Thanks.God Bless ***xx
bluebirdy
01-18-2008, 02:06 PM
I had a follow-up with my Neuro - which I was dreading. I figured he would want to put me BACK on Cymbalta or something similar - and I was right. I had a feeling from previous appts. that even though he Rx's Cymbalta he didn't know much about w/d side effects. Found out I was right about that too
This would be laughable if it weren't so serious. I found out he's pretty much CLUELESS about the possible s/e's of going off of Cymbalta. I told him outright that doctors don't ever take their patients off of these drugs ... and that's why I suspected they don't encounter the w/d problems. To that he responded that, well, he must've had some patients that took themselves off of Cymbalta, and all he recalled were minor side effects. Pretty much confirmed my theory! :rolleyes:
Get a load of this: the Cymbalta w/d destroyed my sleep in the first couple of weeks as I've written. That's gotten better but it's still a problem. I haven't posted this before for privacy reasons ... but I've had several episodes of sleep paralysis - one very serious - because of all this. I didn't know if the Cymbalta w/d caused this directly, or indirectly due to extreme sleep exhaustion. From Googling and from talking to the Neuro, it's clear to me that it's been caused by the sleep exhaustion. BUT ... the Neuro first started quizzing me about my sleep patterns ... talking about Narcolepsy :eek:, asking if I'd ever heard of it, then yabbering on about sending me to a ... sleep disorder clinic :eek::mad::eek::mad::eek::mad::eek::mad::eek::mad: :eek::mad: I have NO symptoms of Narcolepsy, never have, answered all of his questions negatively, told him FORCEFULLY that this is only related to, only started because of ... THE CYMBALTA WITHDRAWAL!!!!!!!!!!!!!!!!!!! He finally said that sleep exhaustion itself can cause sleep paralsysis. But MY GOSH - if I hadn't been careful, he would have had me scheduled for narcolepsy tests :eek: and a sleep disorder clinic :eek: $$$$$$ all due to the withdrawal effects of Cymbalta :mad::mad::eek:
And of course he first suggested putting me back on an SSRI which I just sat and shook my head NO NO NO to.
The only good thing that came of the visit was that he gave me a totally different Rx to try that I think will help with the #*@(# eye/ear/tinnitis rattling in my head that's driving me CRAZY.
Does it ever end?
The best thing I can do is stay away from doctors and ride this thing out ... and make sure I SLEEP. I've found that that is critical. My BAD days are when I haven't slept.
take care you all ... and Shelley ... I've PM'd and sent you a note. So so sorry for what you are dealing with. It's maddening.
hugs all, bb
Sara1979
01-18-2008, 04:55 PM
I am sorry your Neuro Appt didn't go better. It's hard to remember but I believe it took me about a month until I really felt better. Hugs
shelley2
01-31-2008, 07:51 AM
hello, how are you feeling now. Im still going through symptoms of withdrawal.I dont think this is ever going to go? Symptoms of withdrawal from ssri drugs..the average person recovers from anything between 6-18 months. Even though i came off another drug but similar I think im looking at the same time frame. I cant even get through a day without crying so how Im going to get through the next month or year goodness only knows. ive now lost my job too as a result of this withdrawal state Im in. My urine is looking pretty dodgy and have a docs appointment tomorrow as baclofen is excreted from the kidneys i am concerned about possible slow damage. This whole thing is like a nightmare. every day i wake up and the battle to just get through the day just starts up again. My elderley parents are so upset and Im no fun to be with anymore.xx:( Sorry to rant and vent. I feel so alone in this. There must be someone here who had a bad reaction from baclofen surely..How can I be the only one in the world?
bluebirdy
01-31-2008, 02:20 PM
I am SO SO SO very sorry for what you have been through and are STILL going through. And I'm SO sorry about you losing your job :( That stinks.
I am STILL sick too. And my doctors are STILL clueless. I don't know where to turn other than going BACK on Cymbalta or another SSRI. In your case going back on the Rx is not an option ...
I understand COMPLETELY about you not being very fun to be around. I feel exactly the same way. Hubby made plans for us to go to dinner at friends' this past w/e ... and we ended up in a fight over it. I didn't feel like going, didn't feel like being around people, and I'm constantly nauseated about food. I actually did have a good time - probably good to get out of the house. And these are old friends who were understanding about me not eating much dinner ...
I'm now having bouts of total liquid diarrhea ... which I read can be one of the (many) symptoms of SSRI w/d. Fun fun fun!
I have not had a chance to ask my friend about being on your drug ... because she just had surgery herself. But I will check on that for you ...
Big hugs, and I will pray for you :) bluebirdy
Nana4&cntn
01-31-2008, 03:27 PM
Hi All,
I am so sorry that all of you are going thru H*ll. I thank God, I have a shrink who prescribes my Effexor, we have talked about Ctmbalta, he said a big NO. Effexor has horrible withdrawl se's. But, comes in capsules that can be broken up into much smaller doses.
I am going to ask the Pain doc to wean me off of the baclofen. I am very glad I have hears the info here, I take 10mg 4x daily. So I will make sure we titrate slowly. Very slowly. And pray all goes well. If not he is a very sympathetic guy who I have known both as a patient and as a social worker. I am not a whiner.
Thank you all for the info, and the ears to listen.
Be well,
Kathy
suede
02-01-2008, 01:31 AM
Bluebirdy and Shelley,
I can't even begin to say how sad I feel for you both and wish I had some answers for you.
I do know that often times when withdrawing from drugs that the more you sweat the faster it will help the drugs leave you body, I have heard of many using steam rooms and that working out is great for it ( then of course the disorders that started us on the meds prevents the work out theory) and
of course lots and lots of water.
Have either of you reported your symptoms to the FDA ? They have a link on their site just for this problem and I'm sure they must have other reports on both of these meds. Also it will help for the FDA to know what is going on with these drugs, it may not be a active solution to your problem right now but it hopefully will help to get these problems made aware of for future reference.
Know you are both in my thoughts and may this hell soon be over for you both and life return to some normalcy.
Linda
houghchrst
02-01-2008, 12:42 PM
BB I am so sorry that this is going so badly for you. As for the sleep you can try a cup of valerian root tea about 45 min. before you go to bed. Don't wait too long because I have noticed that it seems to lose it's ability to work if you do. I have started using it occasionally and my pdoc says it is okay to use. It works surprisingly well.
I wish you both better days ahead.
BB,
As you know, I had bad SSRI withdrawal symptoms a few years ago when I stopped Celexa abruptly... and now am in the process of SLOWLY going off of Effexor and have had almost NO withdrawal symptoms.
For me, the trick has been going SSLLOOOWWWW with the dosage decreases. And, my psychiatrist is definitely aware of the SSRI withdrawal syndrome, so we have had a plan to do this slowly and back up to the previous dosage when needed.
I know you have a lot of time invested in getting off of the Cymbalta so far, and I am not sure if your neuro suggested just plain going back on it or if he/she meant to go back on a lower dose than you were taking before and then gradually taper. It sounds like he/she just wanted you to go back on it... and I agree that I would be like "WHAT? After ALL of this you want me to go back on it???"
But, part of our plan for gradually getting off of the Effexor has been to go back up to the previous dose (higher) if needed and then come back off of it more slowly. So, if your neuro was suggesting THAT, then I might actually be in favor of it (if it were me).
It is like getting off of anything else that causes withdrawal... going slowly and tapering off of it more gradually causes a more gentle withdrawal, but sometimes there are reasons to go more quickly, too... it is all very individual stuff.
Whatever the case, I hope you start feeling more and more like yourself every day.
bluebirdy
02-02-2008, 07:02 AM
Thanks Nana4, suede, Christina and Kira! You're all very kind to respond.
I'm worried about Shelley - will PM her to see how her doc appt. went.
Kira - you're right that there are 2 possibilities about "doing back on Cymbalta". Both of my doctors want to put me back on Cymbalta or another SSRI ... meaning put me full-blown back on one of them. The other possibility is going back on a low dose in order to titrate off. I actually called my prescribing doctor's nurse back in December and had her call me in a prescription to do just that - it was something **I** had to request and direct. The Rx is still sitting at my drugstore because: 1) I kept thinking I would feel better any day, 2) I have to make up my OWN titrate schedule, and 3) Cymbalta only comes in 60, 30 & 20mg. I was on 60mg originally, titrated quickly down to 30mg (was OK) then off (BOOM!). The Rx I requested is 20mg ... the lowest dose they make. I'm scared it's not low enough to get off of this stuff. You read story after story of folks taking apart capsules in order to properly titrate off of this stuff. I'm afraid to do that on my own. And I don't see how someone can titrate back on and off again just using 20 mg capsules ... ???
I've got to go. You all have a good day and many thanks again! bb
shelley2
02-02-2008, 09:46 AM
Hi Dont go back on the drug. Chat to me first about this. The stomach thing is common. can you explain what cymbalta is..Is it a benzo drug? if it is do not take another drug to counteract the effects of the first..this wont solve the issue. First let me know if its a benzo or is it the anti depressant? The nausea thing. i can relate to that too. I still have that at 6 months off. PM me if i dont respond quickly. Im going to my boyfriends to relax there but please dont take the drugs until you chat to me. I may have someone who can advise you better. Shelley
BB,
Another thing my psychiatrist mentioned as an option would be to substitute another SSRI for my Effexor when tapering. Effexor XR only comes in 37.5, 75, and 150 mg capsules... but there is a plain Effexor (not "XR") that comes in tablets that can be cut. Anyway, I am down to 37.5 mg and haven't made a change in a while, so who knows what will happen when I get rid of that last little dose.
He said that if I have trouble going from 37.5 to 0, we can either substitute the plain Effexor and cut tablets (not sure what dosages those come in), or we can switch to another SSRI with a wider range of available dosages. He said he likes to use Zoloft for this, but that not everyone needs it.
The reasoning is that it will still give your brain some of the extra serotonin that it is accustomed to, and then as you slowly decrease the amount of SSRI, your brain gradually gets back to managing serotonin & serotonin receptors on its own.
Normally, to send a message from nerve cell A to nerve cell B, a neurotransmitter is released into the space between nerve cell A and nerve cell B (called a synapse). If the neurotransmitter is serotonin, then serotonin is released from nerve cell A and binds to receptors on nerve cell B. Next, nerve cells take up the remaining serotonin in the synapse (called reuptake).
SSRIs inhibit some of the reuptake, which leaves more serotonin in the synapses. As an adaptation to these higher serotonin levels, nerve cells (like nerve cell B in the above example) increase the number of serotonin receptors on each cell.
If the SSRI is stopped suddenly, then reuptake isn't inhibited anymore. Nerve cells return to taking up the extra serotonin in the synapses, so the level of serotonin in the synapses falls abruptly. It takes longer for the extra serotonin receptors to decrease, though. One major cause of withdrawal symptoms in SSRI withdrawal is that there are these extra serotonin receptors, even though the extra serotonin is gone.
Over time, the number of receptors gets reset back to normal as the brain adapts to the lower levels of serotonin.
If the SSRI is tapered gradually, the brain is more able to respond to the gradual decreases in serotonin levels and keep up with needed adjustments in the number of serotonin receptors.
There are probably other mechanisms involved in SSRI withdrawal, too, but this is the main mechanism that I know about.
It is a little more complicated with SNRIs (Effexor and Cymbalta) because there are two main neurotransmitters involved (serotonin and norepinephrine). From what I understand, both meds work mainly on serotonin at lower doses and work on both serotonin & norepinephrine at higher doses.
Personally, I had problems with higher doses of Effexor (agitation & anxiety, tremors, etc) and did much better on a lower dose of it. My psychiatrist thinks that my problems with higher doses were due to norepinephrine effects, and that I did much better when the dose was low enough to effect predominantly serotonin.
bluebirdy
02-04-2008, 10:59 AM
Shelley - I hope Kira has answered your question about Cymbalta. She understands it a lot better than I do. I knew it was an anti-d and for peripheral neuropathy ... which is why pain docs liked it when it came out. I was on Zoloft before Cymbalta and there was no problem switching between the two.
I just had another bout of this bad diarrhea - a more recent symptom and definitely NOT normal for me. I'm constantly nauseated - not like I'm about to throw up usually, but just enough that food doesn't sound so great.
I would go on ANOTHER anti-d that could be titrated down easier - since the manufacturer of Cymbalta is NOT making that easy :mad: But I've got to have a doctor who knows what he's doing ... how to find one?? I go back to see my pain doc (the prescribing doctor) soon ... but he's clueless. Helpful but clueless. I think he'd be willing to put me on another anti-d just to titrate me off ... but he'd have to know what he's doing! And he's the one who titrated me off of Cymbalta WAY WAY WAY too fast and started this whole mess.
My Neuro assured me that my brain would eventually adjust ... but he's also clueless about Cymbalta w/d, so how much does his opinion count?
Shelley - I'll e you. Thanks! bb
bluebirdy
02-04-2008, 11:02 AM
About Zoloft
I felt comfortable being on Zoloft (can't remember why the switch to Cymbalta was made) so maybe Zoloft is THE ANSWER! Thanks for your post :)
bluebirdy
BB,
Whether it is Zoloft or Cymbalta or any of the other SSRIs/SNRIs, there is still the potential for withdrawal symptoms like you are having with Cymbalta... The reason my psychiatrist mentioned Zoloft was just that it is available in a wider range of dosages, which makes tapering easier. I think there are other SSRIs that you can do the same thing with, because they come in a wider range of small dose pills. I am not sure if any come in liquid form, but it seems like that would be even easier to use for titration.
It has been a while now since you stopped the Cymbalta, so hopefully things will start to get back to normal for you. I am so disappointed with the medical community's dismissal of the SSRI withdrawal syndrome now that so many patients have experienced it over the past several years. I mean, it is even included in the warnings on the drug labels and drug prescribing information.
My current doctors seem to know about the SSRI withdrawal. My Effexor is prescribed by my psychiatrist, but I have mentioned to my other doctors that I am tapering off of it, and they have all seemed knowledgable about it.
Although in any specialty you will still find dismissive or poorly educated docs, I think that psychiatrists have seemed most knowledgable about going on/off of psych meds like the SSRIs. Maybe a psychiatrist would be able to help you with the Cymbalta withdrawal symptoms?
It always seems to be luck of the draw, though, if you are going to get a good doctor or now. Is there anyone you know who could recommend a good psychiatrist in your area? That is really the only way I've ended up with good docs... recommendations from friends/family/other docs, of just plain luck.
shelley2
02-05-2008, 05:04 AM
hi Bluebirdy, what your neuro tells you is exactly what my neuro tells me that eventually with time the brain will recover itself. Basically like you I was withdrawan too fast and was reinstated which for me made things worse but it may not with you. I was thinking of you joining a benzo group but have realised that your symptoms are due to an anti-depressant which is not a benzo. I know alot of people on TRAP- and i think some of them have been on cymbalta. I think the ultimate decision depends on you. can you stick it out and wait for your brain to recover slowly-and it will be slow or do you take something to ease this? if you do I wouldnt advise abenzo and if you then withdraw from the second anti depressant you take then do it ever so slow-dont follow the docs advice-go even slower cos your brain is already having a hard time to adjust and you dont want to put it through any more. Ive been off 6 months and yes there is some improvement but realistically I think im looking at all of this year for my brain to recover. I think the distress is having more of an effect on my body than the withdrawal. I feel ill every day with symptoms but always get relief in the evening. Im living a half life..ie just existing and waiting...I have fears and thoughts of doom which i find hard to control. I have nothing to look forward too and just exist and going back on a drug is just not an option for me. Oh how i wish i had trusted my own instinct and weaned off.xx I have reported all this to the drugs regulation and they just file it and thats it! The drug company rand yesterday and said I was a rare case and they have no history of anyone else to compare to so all i can do is leave it to God and time.
bluebirdy
02-05-2008, 09:52 AM
Story about our dog ...
One of our 2 dogs has seizures - and I had been taking that one to a special vet who does herbs and special diets to help with seizures. It never helped and she continued on phenobarb for the seizures. A year ago the Vet upped her dose. This summer she lost a lot of weight and the Vet put her on "low" (!) thyroid medicine - which I questioned. Didn't make sense. Then I had another problem with this Vet's dx. Last week her phenobarb needed refilling so ... I yanked her from the Vet and took her back to our old Vet.
Our old Vet ran a full set of blood work on her ($350!) and expressed great concern about the high level of phenobarb she was on. Well. The money on the lab work was well spent because it showed that her liver enzymes are all VERY HIGH :eek: The Vet called me VERY concerned, told me to halve her phenobarb immediately, and to start with a new drug to help her liver. She had a seizure last night - of course. We're very worried about her.
Once again - like doctors - this Vet was NOT on top of the drug she was prescribing :mad::mad::mad:
Shelley - I was afraid if I file this with the FDA nothing would happen. Or I would never know what would happen. Or it could be used against me.
I have a friend who sees a psychiatrist ... and she's encouraged me to see him. BUT ... when I say that I want to make sure beforehand that he knows about Cymbalta w/d specifically she's silent. I thought she might ask him :confused: Other than him I know zilch about psychiatrists.
I'm going to look up the dosages of Zoloft in that Orange Book.
bb
elliegrl
02-07-2008, 03:46 AM
I'm so sorry!!! I had to go off Cymbalta and I am convinced it is the most evil medication ever!!!! I had the most vivid, bloody, horrible nightmares all night for weeks. I couldn't drive for the 1st week because the brain zaps were so bad. Some people have minor zings, but mine literally started at the base of my spine, traveled up into my head & then when at top of my spine it would flash & it'd see a flash of white!!! I thought I was dying, till my friend who rushed over searched online & found out about "brain zaps." Any med that can zing up your spine has something seriously wrong with it! I had to go back on and come off slowly. I cut the capsule, poured out the powder, and slowly over weeks reduced the dose till I was done. I still had occasional brainzaps.
My GP had me on it for chronic pain & had me at 120mg!!!! I went down to 60. Many docs hand SSRI's out like candy, this GP offered it to anyone w/ chronic pain & who shed a tear. Cymbalta & Effexor have some of the worst withdrawal effects ever. I'm so sorry, I have no advice other than cutting the capsule & reducing the amount of powder you ingest. My psychiatrist I see now said if you split the dose into morning & night your body becomes more accustomed to going periods w/out it & it makes it easier to go off. Good luck & I totally hear you about the Cymbalta! Many people who swear by it have never had to come off it. =(
suede
02-07-2008, 04:04 AM
BB, so sorry to hear about your pooch, you might try e-mailing Troy and asking if he has any advice for you, he has been so much help to me and others and has said if anyone needs any help with the pets to let him know.
tjandfon@hotmail.com
Hope you both feel better soon.
Linda
bluebirdy
02-07-2008, 09:53 AM
elliegirl - thanks for your post about Cymbalta and you empathy! It's one h*ll of a drug to get off of.
suede - I e'd Troy a bunch of times years ago about my doggie and her seizures and he was wonderful!
** I am starting a new thread because of what my Pain Doc has now done to me ... he's punishing me because of my continued complaints about Cymbalta. I thought my life was turned upside-down by Cymbalta ... well, now my Pain Doc is turning it upside-now even more :(:(:(
hugs, bb
shelley2
02-08-2008, 05:22 AM
Hi ellie girl, if you have severe nightmares after coming off a drug or strange dreams while weaning off and they go on for weeks rest assured it is actually a sign of recovery and the brain going back to its normal state. It is a sign of normal sleep patterns returning. Its almost like the brain having to go backwards to get back to normal. When you have withdrawal symptoms it is the brain readjusting itself and they should reduce over time. Cymbalat withdrawal symptoms can go on for many months but at a reduced level the further you get away from the drug. But its no picnic. At 6 months off i would say there have been lots of improvements for me but relistically im probably looking at another 6 months before I can say that Im healing to a functional level.
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