Perplexing question for Pharmasist Steve!

[JAVISI]

Pharmasist Steve,
I will go a little into my illness and then go to the question.
I have been diagnosed with Myoclonal Cerebellar Ataxia. I do have a mutation on the SCA 14 Gene ut not in a spot seen before so some reluctance was used in that diagnosis although I have all og the symptoms.

Symptoms;
1) Ataxia
2) Myoclonus
3) Convergence nystagmus
4) Low homocystein levels
5) Generalized weakness
6) Speech problems
7) Swallowing problems
8) memory problems, difficulty finding words
9) Weak diaphram and lungs, working at about half the normal capasity
10) problems with bowel motility
11) Neuropathy
Wow, I think that covers it! I was an R.N and worked in the ICU and at times the ER. I sure miss my job terribly. I usually come here to help others if I can, It is therapy to me:o

Meds
1) Vitamin B12 with Folic acid
2) A once a day womans multivitamin
3) Duoneb nebulizer treatments 4 times a day
4) Potassium 20meq 3 X's daily
5) Gabapentin 600mg 4 times a day
6) Prilosec
7) Wellbutrin
8) lasix 80mg daily
9) Spironlactone 25 mg
10) Metolazole 5 mg 2x's a week
11) Elavil
12)Citalopram
13) Topral XL- My heart is stiff
14) Klonopin 2mg 3X's a day
15) Glyco-lax
16) fibercon 4 X's a day
17) Correctol 3 tabs daily


Prn's but I have to use them daily Rolaids and Zantac.

I have had many procedures that are considered conscious sedation, using Versed, Morphene, Phentenel, None of these meds sedate me. I remeber everything and feel everything. My g-tube was placed and I watched him doing it on the monitor. It hurt very bad but I hung in there.:( :(

I can take hydrocodone, percocet ect.. NONE of them work for pain management! I have chronic left sided pain due to my desending colon spasming, I also have bilateral leg pain.;)

Have you ever heard of this? The Internist that I used to go to said it was because ofr the Klonopin? If that is true then what else could the Dr's use to sedate me? My gastro Dr said he has no doubt that he could keep giving me the versed and fentinel and I would not become sedated!:eek:

I would appriciate any answers from anyone!:confused:
Thanks sorry my post was so long!
Still Dreaming Big and Reaching for the Stars! Javisi:)

[Mayzoo]

I have heard of anethesia awareness---read this and see if it fits at all.

http://awarenesshaven.typepad.com/

[JAVISI]

Mayzoo,
Thank you for sharing the site with me. Mine is similar, but not quite the same. I can be put under for surgery. I just can not be sedated for procedure like a colonoscopy, a endoscopy, or bronchial washes.:(

My Gastroenterologist says that he gives the medications to me, to make him feel better knowing that I will remember and feel everything.

When I tell other Dr's they make assumptions like I ama drug seeker looking to get a high. They don't beleive me when I tell them I heard and felt every thing that happened during the procedure. None of the meds helped for the pain or make me unaware of what happened during the procedure:( !

Thanks again!
Dreaming Big and Reaching for the Stars, Javisi:)

[PAINJOURNEY]

Javisi-

I had the SAME thing happen to me during an upper endoscopy!!!
When the nurse took me to recovery, another asked how it went. Her answer- "she was awake during the WHOLE procedure!"

When I voiced my concern the doc's comments were "we gave you twice the normal dose" So? I was still awake!

To top it all off, the report stated "patient tolerated procedure well"

So, what would have had to happen if I did NOT tolerate the procedure well?

P.S. Javisi-after reading your post again- I realize your situation is pretty complicated, so I didn't have the same thing happen to me-but I sure can sympathize!

[JAVISI]

PAINJOURNEY,
What an awful thing to happen! I wish that the Dr's had to experience that once, then they would make sure that you really are sedated!;) . I just dread having any procedure done because unless they put me completely out I feel hear and know everything that is happening.:(

My gastro Dr. feels so bad that he has been unable to sedate me for the procedures. I think the Bronchial wash and the gastrostomy tube placement were the worse!:eek:

He told me that I am the strongest patient that he has ever met!:) That was sweet, He at least is a kind and caring Dr. I just wish I new why they are unable to sedate me:confused: . Because I know that I will have plenty more procedures ahead of me!

Thanks for your kindness. I am so sorry about your event and if you ever need a procedure again make sure and tell the Dr about your last experience! Otherwise procedures vorder on torture!:eek:

Dream Big and rach for the Stars, Javisi;)

[JAVISI]

Dear Friends,
I am still looking for answers or others that medications just don't work! I wonder what is going on with my body. Besides the other medications that I listed above that do not work for me. I am on 3 different diuretics but they do not take away my edema. Do I need another heart medication? Something to decrease the work load of my heart? As a Nurse I have never heard of any of this before. Anyone with any ideas, I would appriciate suggestions or ideas!
Sincerest Thanks, Javisi:)

[moose53]

((((((Laurie)))))),

I have an idea. I've no similar situation so I'm just throwing this out there for thought.

When I was much younger, I had a couple of full-sedation procedures done. I was so depressed and suicidal when I woke up that they had to keep me in the hospital two days longer. Also, when my Mom had her very first surgery, she woke up after the surgery and took a knife to the nurse.

I told the anesthesiologist about these incidents before I had surgery for endometriosis. He told me that there were other drugs that he could give me.

I was just thinking, might it be worth your while to make an "office appointment" with the head of the anesthesiology department and discuss your concerns with him?? Maybe if you discuss with him/her when you're not just getting ready to go in for surgery, they'd have time to look for another alternative.

Also, I've found that my local pharmacist is very good about looking at drugs that aren't agreeing with me and suggesting alternatives. He's a CVS phamacist. But, I've been going there for over 6 years. He's gotten to know me really well. I think when you have 'trouble' taking drugs, it's good to have someone in your corner that really understands the medications. Sometimes doctors just plain don't have the time to learn about all the possible interactions and side effects.

More hugs.

Barb

[JAVISI]

Barb,
Thanks for the idea. I never really thought about talking to the anesthesiology department or my pharmasist. I switched to Wl-mat due to the $4.00 medications. It have saved me a bunch of money on a lot of my meds!

Thanks again for the wonderful ideas! You are a gem!
Dreaming Big and Reaching for the Stars, Javisi:D

[Mayzoo]

I will look more into the benzos and anethesia--I see that you are on three diuretics...that may be "washing" out your system of the anethesia as well.

Side note--have you looked into an MRI for a potential diagnosis of Arnold Chiari Malformation....long shot and I know you don't want to add any more initials after your name than you already have...but my daughter has this and I have done GADS of research on this. 98% of your sysmptoms also are Chiari symptoms.

Here is a link: http://www.conquerchiari.org/index.htm This is a laymen's site...take your pick of your favorite medical site(s) for your own research. I like www.medscape.com, but I can't post direct links here because they won't link up unless you have an account--to get an account you have to provide information "proving" you are in the medical field. The accounts are free--but I bet you have a favorite source already.

I don't think pharmacist steve comes to this paticular site--you may have to PM him.

Mayzoo

[Mayzoo]

I would tend to lean toward the washing out theory, or that the receptor sites for the anethesia (versed/fentanyl) are already bound by something else ie the other opiate pain meds, so the stronger anethesia meds are not attaching to the receptor site, and working as they should. Also I have read. and will post about the paradoxical response to benzos, since the introduction of anethesia might be trigging a paradoxical response when normally you do not have one.

"Benzodiazepines commonly are given alone or in combination with anesthetics to induce sedation. Unfortunately, some patients experience paradoxical reactions to these agents.[1] These reactions are characterized by increased talkativeness, emotional release, excitement, excessive movement, and even hostility and rage. The pathophysiologic mechanisms underlying these reactions are unclear; however, several predisposing risk factors have been identified. These include young and advanced age, genetic predisposition, alcoholism, and psychiatric and/or personality disorders. Children and elderly patients may be more predisposed than other patients to paradoxical reactions with benzodiazepines. It has been theorized that these subgroups of patients have alterations in the pharmacodynamic response to benzodiazepines; however, the exact differences have not been specifically characterized in the literature.[2] Some patients may have a genetic variability in the benzodiazepine-GABA-chloride receptor that results in an abnormal pharmacodynamic response.[3] Multiple allelic forms of genetically determined benzodiazepine receptors exist, resulting in differing affinity for benzodiazepines among patients." (medscape.com)

Also, are you taking any pain meds prior to the anethesia attempts?

I really hope nothing I say or ask comes off as judgemental or like you are a "drug seeker" by the way....as that is the furthest thing from my mind---I am just taking some shots in the dark to try to help.

[JAVISI]

Mayzoo,
I do not take any offense to information!:) . I do not take pain medication because of the fact that they work about as much as taking a baby asprin. I do not drink alcohol. My mother is an alcoholic and I seen first hand how alcohol can devastae your life and the lives of others.

I have an extensive brain history on my dad's side of the family.

1) uncle and my dad both had cerebral aneurysms

2) Aunt and cousin both died from brain tumors

3) 2 cousins had strokes at a young age

4) Another cousin dying from heart failure, due to developing a stiff heart.

5) My sisters son has Arnold Chairi Malformation #1

Right now that is all I can think of but there are more things. All I definatly know is that my brain is not working right. I was approved for Social Security Disability. I was so heart broken and still am, I loved my job at the hospital. I was an adrenalin junky. I worked the best under stress. Now stress just makes my symptoms worse. I am depressed, mostly related to my job loss, I lost my sense of my identity. Nursing was my life!

I was married to analcoholic that beat me on a very consistant basis, often kicking me in my head. I wonder if that is why my cerebellum doen't work like it should?

I have had numerous MRI's. I did have a genetics test as I said before showing a m utation to the SCA 14 gene, but thet can not diagnose me with that due to the mutation being in a place that they have never seen before?

I am just frustrated that I am taking so many meds yet none of them seem to work like they would on another person. My internist blames my being on clonopin? I have tried to stop taking it, weaning down but when I do, I have the appearance of a Parkinsons type tremor??

This is the only place that I can go where people seem to understand where I am coming from. Sometimes I hear, well you don't look sick:rolleyes: I have my good days and bad days. On bad days I stay home.

I want that magic cure that no one seems to give me answers too!

Thanks again for the info! I think I will PM Steve and see what he thinks!
Hope to hear from you soon, Javisi
Still Dreamin Big and Reaching for the Stars!*fairies *sparkle

[Pharmacist.steve]

Pharmasist Steve,
I will go a little into my illness and then go to the question.
I have been diagnosed with Myoclonal Cerebellar Ataxia. I do have a mutation on the SCA 14 Gene ut not in a spot seen before so some reluctance was used in that diagnosis although I have all og the symptoms.

Symptoms;
1) Ataxia
2) Myoclonus
3) Convergence nystagmus
4) Low homocystein levels
5) Generalized weakness
6) Speech problems
7) Swallowing problems
8) memory problems, difficulty finding words
9) Weak diaphram and lungs, working at about half the normal capasity
10) problems with bowel motility
11) Neuropathy
Wow, I think that covers it! I was an R.N and worked in the ICU and at times the ER. I sure miss my job terribly. I usually come here to help others if I can, It is therapy to me:o

Meds
1) Vitamin B12 with Folic acid
2) A once a day womans multivitamin
3) Duoneb nebulizer treatments 4 times a day
4) Potassium 20meq 3 X's daily
5) Gabapentin 600mg 4 times a day
6) Prilosec
7) Wellbutrin
8) lasix 80mg daily
9) Spironlactone 25 mg
10) Metolazole 5 mg 2x's a week
11) Elavil
12)Citalopram
13) Topral XL- My heart is stiff
14) Klonopin 2mg 3X's a day
15) Glyco-lax
16) fibercon 4 X's a day
17) Correctol 3 tabs daily


Prn's but I have to use them daily Rolaids and Zantac.

I have had many procedures that are considered conscious sedation, using Versed, Morphene, Phentenel, None of these meds sedate me. I remeber everything and feel everything. My g-tube was placed and I watched him doing it on the monitor. It hurt very bad but I hung in there.:( :(

I can take hydrocodone, percocet ect.. NONE of them work for pain management! I have chronic left sided pain due to my desending colon spasming, I also have bilateral leg pain.;)

Have you ever heard of this? The Internist that I used to go to said it was because ofr the Klonopin? If that is true then what else could the Dr's use to sedate me? My gastro Dr said he has no doubt that he could keep giving me the versed and fentinel and I would not become sedated!:eek:

I would appriciate any answers from anyone!:confused:
Thanks sorry my post was so long!
Still Dreaming Big and Reaching for the Stars! Javisi:)

There is not going to be a easy answer to this... mostly educated guesses...

THe basic reason(s) why a drug won't work is :

tablet doesn't dissolve
liver metabolizes drug very fast
receptor site is "tied up" with some other drug...

THe stomach is acidic and intestines are basic .. if you are taking enough Zantac, antacids, PPI and the like ... tabs/caps that are designed to dissolve in the acidic stomach may be mostly passing thru the stomach - because there isn't much acid and on into the intestine where they won't dissolve in a basic environment. Crushing tablets/emptying caps might help here .. since it won't depend on the stomach acids to help dissolve/breakup the tab/cap - as long as the med is not long-acting

The only way to tell if a drug is being metabolized quickly is doing repeated blood level testing after dosing.. this could also determine if the drug isn't being adsorbed.

determining if receptor sites are being tied up by another drug is above my "pay grade" and the same for the typical pharmacist.

[mrsdoubtfyre]

and find the drug list here overwhelming.

3 diuretics
3 antidepressants

and that is only for starters.

I have one observation here... when so many drugs are used, you become an anecdote...because interactions with all of them have not been documented enough to predict what will happen to YOU.

Right off the bat...I suspect you are low in magnesium and thiamine.
Both are depleted by diuretics, and you use 3 of those. Why are you on these?
You don't mention kidney failure.

When thiamine is lost, you can develop beriberi... and this leads to cardiac myopathy. Is that your "stiff" heart?

http://www.emedicine.com/ped/topic229.htm
and
http://www.emedicine.com/med/topic221.htm

Low magnesium also impacts heart and other muscle functions. You can have tests for this nutrient and well as Thiamine. There is not enough thiamine in a typical multivitamin to replace what you are losing. If you have a genetic defect that contributes further, then you become very deficient. Low thiamine leads to neuropathy. Many neuropathies are reversible with nutritional support.

I think your case, Javisi, illustrates what happens to people who are given drugs to treat side effects from other drugs.
A reference that you may find useful is:
Drug Induced Nutrient Depletions by Ross Pelton and James LaValle both RPhs.

Another is:
The Side Effects Bible by Dr. F. Vagnini MD

Here is an excerpt from Dr. Vagnini's book:
http://www.enotalone.com/article/4624.html

From your drug list you are affecting neurotransmitters:
dopamine (Wellbutrin)
Elavil (norepi and serotonin)
Celexa ( serotonin)
Klonopin (gaba)

We have learned with time that drugs altering neurotransmitters cause the brain to alter their receptors...so you are effectively not the same person you were before all these drugs were added. And I don't think there is an answer for you, to this complex event. We do know that increasing serotonin in the brain (using Celexa for example) lowers dopamine levels. (hence you are on a dopamine affecting drug now Wellbutrin). With your 4 medications, we will have to learn more, but I suspect your brain is juggling this chemical situation, and what you notice frustratingly is the result of that.

Using acid lowering drugs like Prilosec for long periods of time, affects absorption of calcium (affects muscles and pain receptors), iron, zinc (affects thyroid function and immunity), B12 and folic acid.
I do not believe there is a iron clad rule that acid is needed for all drug absorption however. Only some drugs are affected.
Here is an article on the acid status of the GI tract:
http://science.kennesaw.edu/~mhermes/pheno/pheno14.htm

Here is a brief explanation of drug absorption and pH.
http://www.madsci.org/posts/archives/oct98/908219076.Me.r.html
All that said, pH is not a major determinant of drug absorption. Because even 0.01-0.1% of the non-ionized form is sufficient to allow absorption of some drug, thus causing more to become non-ionized and subsequently be absorbed, the passage of the drug through the intestine is usually slow enough to allow complete absorption

It might be in your best interests to find a holistic physican who can evaluate your extensive drug list, and help you with that. It could be that some of your problems are drug induced, and reflect some deficiencies. Standard doctors have no clue about this...you need a specialist.

[JAVISI]

Dear Friends,

Thank you so much for your responses. I am just so frustrated mainly due to the inability to get any pain releif. I was on a phentinel PCA, Even with high doses it did not make me drowsy or really releive my pain. I live with pain on a dail basis and it sure can wear a person out.:(

I am on the 3 diuretics due to edema but even with adding the 3rd I still have edema. After I take all otf these in the mmorning I may urinate 3 to 4 times and that is it. I have thopught of seeing about an Iv dose to see if it would work better? Of a medication like, I can't think of one single med but albumin to pull the fluid from the tissue and into the urinary tract? This just started one day for no reason and the Dr's can't seem to tell me why??

I have an Internist for my primary Dr and a gastreoenterologist for my stomach problems. He thinmks now that I have a neuropathic stomach and colon, because no matter stomach meds I take they do not help! I take the gabapentin for the neuropthic pain. I have trigeminal neuralga. The Klonopin is at a high dose as I have been told by my Dr's. I have been on that dose for over 2 years now, so I am having break through tremors:( .

My bowels are shutting down I take correctol, fiber and miralax, nothing helps. I then have to administer and enema and drink Mag citrate (yuk):o But it is better than getting a bowel obstuction! Initially when I had a bowel series done I had an extremely fast rapid transition, now it is the opposite. I really don't want to be dependant on all of these medication but it seems I have no choice.:confused:

I understand that this is a very complex situation but I need help!~ I get no pain releif from anything and I am tired of living in chronic pain. Thanks again for all of your help!
With sincerest appriciation, Javisi:)

[Cry Tears]

Javisi....I'd urge you to take MsDoubtfyres advice and see a Holistic DOCTOR who could take you under his care and turn things around for your life.
I was on a "Hamster Wheel" going from doctor to doctor seeking the cause for my very severe anemia, 5.1 hgb. You would not beleive the diagnosis they came up with...when really was an AVM, anuerism like in my intestines.
I suffered 2 and half years just getting transfusions...the highest they could get my hemaglobin was around 8.5 hgb...never any higher. My life was a nightmare...ha! Then after they removed the AVM and 3 feet intestines because of Crohns disease...if you can beleive a nightmare could get worse, it did! I developed severe muscle weakness....had trouble even swallowing! Too fatigued to even roll over in bed...was in bed 24/7...then developed Peripheral Neuropathy...my lips burned and I had no sense of balance and couldn't walk without hanging on to something.
I used a rolla walker just to get to the toilet....I had to have home care, help with grooming and basic home care...my husband works from home, but when too busy he paid someone to come in to take care of me.
Non of the doctors I saw had any answeres other than write more scripts, suggesting their veiw...anywhere from MS, ALS, Depression, Fibromyalgia, but non of these highley trained doctors considered vitamin or mineral deficiencys even tho I ASKED them if this could be....well DUH!
Turned out it WAS a B12 def....took Rose, MrsDoubtfyre and othes on old BT to persued me to take it...once I did I began to live again!
Its too bad my original threads regarding all this got lost in the big crash.
That was about 3 years ago. I still have health issues, but at least I'm living a "normal" life now...back to driving, keeping up with my own housework and chasing my grandmonkey....9 YO Madi.
I know what you mean by missing work....I'd love to be able to work again, perhaps someday. But for now I'm enjoying doing volunteer work here and there with my decorating for church pot luck dinners and parties.
I hope you find a doctor who will help you figure out whats going wrong with you...and take advice given here about finding a holistic doctor...one who is an MD, but has Holistic training as well.
My husband was supposed to have heart stints put in...all the men in his family have stints, or bypass surgerys by age 60's.
My husband began having the classical chest pain problems, but he took a different road than his family did...he's controled his health with diet, went on the CHIP program...no more chest pain! But is very hard diet to follow, but means my husband will NOT be having heart problems.
Here's a link for those who're interested in this. http://www.sdachip.org/
This proves there are alternatives for our health...Doctors are only trained and have time only for conventional "treatments".
Blessings, cheryl

[PAINJOURNEY]

Javisi- How are you Hanging in there? Please let us know....

MsDoubtfyres- I heard there is a natural supplement called GABA (or something similiar) The meds I have been on in the past that have helped seem to be working on the gaba receptor...A nurse told me of this supplement..

So, its it true? And if so, do you think it is worth trying?

Thanks...Hope to hear from you soon Javisi....

PAINJOURNEY

p.s. Cheryl- sounds like a nightmare what you went through! I agree, our health is complex....docs are trained to think in black or white...conventional medicine is just ONE part (or one option)...Our bodies and minds need multiple choices and alternatives when it comes to getting well or managing chronic problems.

[JAVISI]

Dear Friends,
I have been hanging in there, but it has been rough especially this past month due to family problems/ my 3 kids are young adults! Thats another story. Went camping last week-end just to try to relax. We took my 3 year old grandaughter with us. She wore me out but, she had a great time!

While we were there I swelled up terribly, My feet were huge! I seen the Dr. on Monday. She increased how often I take the Zaroxolyn. It seems to have helped but my legs ache and just plain hurt! I have also tried to keep them elevated.

My Internist also put me on Reglan to help with my bowels and switched me to from the generic Klonopin to the brand named Klonopin. I don't seem to notice any difference.

I am just continuing to take more and more meds, Frankly I am tired of it!! I spend a lot of money on meds, that don't seem to work! Stress has really taken its toll on me this year. It is so hard to cope when you are in pain. When offered pain medication, I say no! It doesn't work so why take it!

I will have to check into a holistic Dr. I live in a small town in Nebraska, My Dr's are all an hour away.

Everything that every one says makes sense4 to me. It is just frustrating and It was like a light switch shut off one day. I have had colonoscopies and endoscopies and I was sedated, I know that it took a while and I was drosy but not out of it. I was well awhere of what was going on.

I am scared, I have been coughing. I do not want to get pneumonia again because if I do then I get another g-tube placement! And I know I will have to deal with more pain!

Thanks for all of the support!, Still Dreaming Big and Reaching for the Stars! Javisi

[mrsdoubtfyre]

Javisi- How are you Hanging in there? Please let us know....

MsDoubtfyres- I heard there is a natural supplement called GABA (or something similiar) The meds I have been on in the past that have helped seem to be working on the gaba receptor...A nurse told me of this supplement..

So, its it true? And if so, do you think it is worth trying?

Thanks...Hope to hear from you soon Javisi....

PAINJOURNEY

p.s. Cheryl- sounds like a nightmare what you went through! I agree, our health is complex....docs are trained to think in black or white...conventional medicine is just ONE part (or one option)...Our bodies and minds need multiple choices and alternatives when it comes to getting well or managing chronic problems.

Some studies show oral GABA supplements do not work, because GABA does not cross the blood brain barrier. However, some people claim they do. I can't say either way.

The precursor for GABA manufacture by the body is the amino acid L-glutamine. Some companies put this in products that claim GABA actions.
Here is a list of do's and don't for glutamine:
http://www.digitalnaturopath.com/treat/T73593.html

Also low levels of serotonin lead to low GABA response:
GABA receptor function may be reduced because of a genetic polymorphism in the GABA receptor that reduces the efficiency of GABA neurotransmission, the presence of GABA receptor inhibitors, or low serotonin levels. Serotonin is a positive modulator of GABA-GABA receptor interaction.
from https://www.neurorelief.com/newsletterarchive.php?issue=236

B6 is needed to make serotonin, in the body.

[Buttons2]

Hi Javisi,just read this thread. As you know I also have myoclonus & brain issues. I have always refused to take the Klonopin (research indicates it's addictive & I've not met up with too many people it actually helps with the jerking).

I also suffer from edema & take a diuretic which I've often wondered if has any actual meds in it! I take one baby aspirin per day for my heart,and keep a supply of nitro pills handy for angina attacks. Some docs have said I have a heart mummur,others' have denied it. My heart tests have always come out normal......however since birth of my first son 39yr ago I have had my heart stop beating when given anthesia,this happened again throughout the years when having surgery. Last surgery was nearly 20 yrs ago, I DID request a consult with the anthesiologist,didn't do me one bit of good,I was out for nearly 12 hrs-quessing that's why they didn't bother to cast my arm (I'd had a double osteotomy). Anyway for me-no more surgery!

Getting back to you, have you ever considered going on a gluten free diet? I went on very low carb diet few weeks ago,after 4 days I had one of my very worse ever myoclonic episodes! Actually afraid I would fall off my bed that night. No particular stress triggers that day either. Looking back on this I began to wonder if my brain was reacting to the drop in carbs,then I figured out I was also pretty much going gluten free also. It's just something you might give some consideration to. My edema also seems somewhat better-even in the summer heat.

You're on alot of meds,I feel for you in taking all this stuff & yet not feeling less pain! You mentioned you take B12,is it the methylcobalamin kind? And it needs to be taken without other vits for better absorption.

Are you drinking alot of water? And I keep harping away @ everyone about the dangers of aspartame,I was consuming far too many diet sodas when I first began having the myoclonic jerks, and at the time I was a basket case as far as my brain cells went-memory loss,etc. stumbling over words. I've cut out 99% of the aspartame in my diet.

Understand what you mean about good days/bad days. The extreme fatique & constant pain somewhere. And the loss of self-respect when we can't function enough to work,loss of friend's,etc. That's why God sent us BT!!:D

Hoping you find some answers-you deserve to have a better functioning life! I strongly believe we are what we eat,so please consider some type of food allergy or absorption problem!

Good luck,HUGS-Buttons

[JAVISI]

Buttons,
I am not on a gluten free diet. My myoclonus was so bad that I could bounce out of a wheel chair or bed if I was not careful. I know that the klonopin is addictive. I experienced withdrawls, cold sweats, insomnia, anxiety ect! Never want to experience that again.I am on a high dose, the FDA reccomends up to 4mg total a day. I take 6mg a day.:eek:

I have tried to come off of it but my myoclonus comes back in full force. I really don't know which is worse. I do not feel drugged out even though I am taking all of these meds. I talked to my new internist and she basically said that all of my receptor sites are being used up??:confused:

I am not sure what to do about that. It just seems like my whole body wants to shut down and none of my meds are doing what they are supposed to do. I hate being on all of these meds! For one thing, the cost is rediculas!:eek:

I take a folic acid, b vitamin supplement that is over the counter. I talked to my internist to make sure that it is enough. I do take a multivitamin also and at the same time so I will try to separate them and take them at different times. I try to eat a healthy, balanced diet. I don't drink any pop, I either drink coffee or tea and water. I know that the caffeine isn't good for me but I have to at least have a few cups of coffee in the morning.:rolleyes:

I drink green tea. I really like it and it is supposed to be good for you! :confused:

Thank you for being such a good friend! I really appriciate it and consider you one of my best friends!:D

Still Dreaming Big and Reaching for the Stars! Javi:)

[Buttons2]

OK,here's the deal,ya need the right type of B12-it's cheap,about $8 for a month's supply. Called MethylCobalamin,I'm keeping mine right next to my 'puter so I don't forget to take it. You also need to get B6 to go with the folic acid. This type of B12 disolves under your tongue. It breaks through the blood/brain barrier! I like the Source Naturals brand I get @ Vitamin world & you can order online. Glad I can help-I gotta say I feel sorry for anyone in Nebraska in the summertime! I've been there!! HUGS,Buttons

[JAVISI]

Buttons,
You have got it right about Nebraska being hot*fire . We really need the rain bad! I sure wish we would have known eachother when you came to Nebraska. It would have been nice to meet somewhere to sit and talk and have an ice cold glass of tea!

When I go to get more medications I will look for what you are talking about! My brain has been in overdrive here lately and I have been so forgetful! I hate that! I worry so much about my kids and things that I have no control over. It is like my brain has to constantly be thinking and it is ususally not about positive things. It is about my kids and their troubles, or about the fear of my ex.*grimace Are these rational thoughts, I don't know but I would love a miricle drug so that I could shut my brain off for a little while each day!

Thanks so much for everything! *smallheart Love Javi

[Buttons2]

Javisi, I'm really concerned about the amount of meds you are taking. My thought is that your poor brain is being drugged so much ya can't possibly function as well as possible. Three anti-depressants for instance,why? Is the same doc prescribing all of these? I've taken them in the past myself,and I always ended up with horrid side-effects. (suicidal thoughts for instance). Just seems to me that one pill @ a time would indicate whether it works or not?

You're a nurse! Did you ever encounter anyone taking as many meds as you do? You mentioned hand tremors (?), I believe some of the meds might actually be short circuiting your nerves.....don't get me wrong,I'm not at all being critical of YOU,I take meds myself,have taken muscle relaxers for many,many years for instance. And I drink wine in the evening to help control the myoclonus,I know you don't drink & of course couldn't do it with all those meds anyway,but for some reason wine helps many people to relax or whatever & reduces the myoclonic jerks.

Hey, I was much younger & healthy when I was in your part of the country! Talk about stress,went there to get my son,ended up kidnapping him! Worse time of my entire life!

I also feel that you deserve to be as free of pain as possible & what if all these pills are actually causing you to feel MORE pain? The brain can only handle so much.....I know for instance that people smoke pot to relieve pain,I've noticed that it INCREASES sensations-if you hurt,it makes the hurt more intense! It can make you feel better but I also know it affects the brain so it has to affect the nerve endings right?

I'm just trying to think of ways to help you,wish I could wave a magic wand & make your days better!

HUGS,Buttons

[Norma]

Javisi
I know you have a pharamicist but I have found this web site for drug/Rx's
medications interactions very helpful.
I have found that Dr.'s and Pharmacist do not always check for interactions
of medications. The Dr. spends so little time with their patients that they know very little about what they have Rx's much less if it interacts with what he has already Rx'd.
This Web-Site is owned and run by people with AIDS but they are really good people and you do not have to have AIDS to use their site.
I have it in my favorites but the first time I used it I just googled in
AIDS MEDS. com and put it parenthesis
I have found it invaluable since people with Aids are so fragile they have done their research when it comes to medications.
Sorry you are having such a rough time of it.
I cannot even phantom what it would be like to have a procedure done without medication/sedation.
Norma