What Options Remain?

[~Kaelie]

Hi all and welcome back!

I've had one heck of a time lately and am just hoping you all have some ideas that I can discuss with my doctor(s)

(sorry that this will be a bit long)

In mid-July I was on 600mg Lyrica and 300mg Topamax. The Lyrica for nerve pain, the topamax for epilepsy. The lyrica was not helping in one specific area (what I call "the lump") so my neuro added Namenda to the mix.

After 10 days on the Namenda I was unable to stay conscious after eating. I could literally not be woken up. When I reported this to the neuro I was told to discontinue it. That very same day the Lyrica completely stopped working for pain relief in the whole area, not just at the lump.

I have not been able to get relief since then... Aug 1st

The neuro didn't tell me to stop taking the lyrica, but only added other drugs to it. First Cymbalta, then added Keppra. Yes, you added right - 4 mind-benders at the same time. I was a zombie and still wishing for death because of the pain.

I ended up on the doorstep of my PCP suicidal and in pain. I told him that "this much pain just can't be right!!" and asked to be referred to pain management or someone who could help. I told him that I was tired of being so drugged up that I could not walk and told him that I was going off of the ineffective drugs (lyrica, cymbalta and keppra). He started me on Neurotnin and referred me to oncology so they could thouroughly check the lump area with a pet/ct scan (which came back fine). Onc referred me to Pain management.

PM-doc injected my spine with a steroid about a month ago, but that has not helped with the pain either. I've heard that it sometimes takes multiple injections to get full effect but the steroid is controversial because of the chance of hindering my immune system which would let the melanoma fester. He did not refill the Neurotnin script so I went off of that... it was not helping any after about a month.

What other options are there? I've given everything a fair shot so far. I am feeling so totally helpless.

~Kaelie
Melanoma warrior since 2005
Peripheral neuropathy Hip/Leg/Bum
Myoclonic Epilepsy since 1999

[NevadaNan]

Well, what a nice surprise to come to my computer and find that Mr. Lester had done quite a bit of work last night to get many of us on. Welcome and a big hello to all who have made their way here already.

Kaelie - You do have the option of starting an opioid, if your pain doctor will prescribe them for you. That is a big decision, one that should not be taken lightly. I made the decision to finally go on opioids after 5 long years of surgeries, PT, and had every possible test to find the source of my PN. It turns out that I have the very lovely "Idiopathic" designation and my days are mixed between good and bad, based on the level of pain. Lately I'm in a bad spell and I hope it changes soon! Anyway - good luck to you and feel free to PM me anythime.

Best Wishes to all,
Nancy (formerly nancy-h)

[californiaDana]

My pain is pretty bad, I take morphine, oxycontin, cmybalta, valium and also use lidoderm patches on my feet all night. These things take the edge off but dont stop the pain all the way , maybe 40%. I guess you have to keep trying till you get the combo right.
I also tried IVIG treatments for over a year and a half, 9 hr days in outpatient hospital,5 days a week every 4 weeks, unfortunately I had a bad reaction. Other people I saw there getting it said they wouldnt be walking without the IVIG, so it does help others.
I guess its a trial and error thing. I know thats not much help but keep trying things you might find something that works.
I wish the best for you.
Dana

[joy]

Hi Kaelie. My neurologist did the same with me, adding on pill after pill until I couldn't stand it any longer. I also have several other problems and like Nancy went to see a pain management doctor for that reason. He did radiofrequencey, blocks, those types of things for me. At first just until he completed the series of shots, he put me on methadone. Well surprise surprise, it did more for my peripheral neuropathy than all the other eight or so medications did put together! A great bonus, it working for my pn as well as for my osteoarthritis. So I slowly tapered myself off the antiseizure medicine, the amitriptylene for sleep, etc. My pain doctor continued prescribing the methadone for me until I found another doctor that would prescribe methadone. This just might be the best option for you as well. My life is not pain free but I have to say it is better now that I am on methadone. For some reason, I'm not a good candidate for the duralgisic patch and oxyconotin (?) did not work long enough. Because I will be on pain medicine the rest of my life and methadone did work, the price was the deciding factor. Very reasonable price. Keep us informed as to how you are doing.

[~Kaelie]

Thanks for the options! Hope seemed lost until just now.

I was totally unaware that there was anything else out there besides the anti-convulsant line of drugs. I mean I knew that opiods existed, but didn't think they were effective or prescribed for nerve pain.

I had a small stash of opiods from the various surgeries from the past couple of years that I took on occasion but they just seemed to affect my head (as in not make me care about the pain as much but not take it away) But I never took them regularly. Does this make a difference?

Thanks again!
~Kaelie

[Brian]

Hi Kaelie,
I am sorry to read your having such a hard time, the trouble with meds is that what may work for some, may not for another, its all trial and error.
Personally i had tried Neurotin, did nothing but make me feel dopey and awfully sick, Oxycotin done the same, Tegretol, another that was useless [to me]

Then i tried Tramadol SR [ slow release] 300 mg x 2 per day with Endep 25 mg in the morning and 150mg at night, done the trick for me, but thats me.
The Tramadol gave me no dopey feeling or any other side affects but cut the pain down a fair bit, and the morning dose of Endep help me as well without giving me that druged up feeling.

I hope you find some suitable meds for you.
Brian :)

[Marty]

Hi Kaelie,
I am sorry to read your having such a hard time, the trouble with meds is that what may work for some, may not for another, its all trial and error.
Personally i had tried Neurotin, did nothing but make me feel dopey and awfully sick, Oxycotin done the same, Tegretol, another that was useless [to me]

Then i tried Tramadol SR [ slow release] 300 mg x 2 per day with Endep 25 mg in the morning and 150mg at night, done the trick for me, but thats me.
The Tramadol gave me no dopey feeling or any other side affects but cut the pain down a fair bit, and the morning dose of Endep help me as well without giving me that druged up feeling.

I hope you find some suitable meds for you.
Brian :)

Hey Brain what is: Endep?:confused:

[Silverlady]

Here is the Medline definition of Endep

http://www.medicinenet.com/amitriptyline/article.htm

Billye

[concerned lady]

Hi Kaelie,

I agree with everyone's good advice! Here are a couple more things you could consider:

1) Might you have a gluten sensitivity? Both Celiac Disease, and non-Celiac types of gluten sensitivity can cause SEIZURES. Cara started a forum over here, called Gluten Sensitivity/Celiac Disease. Cara first told us about Dr. Kenneth Fine's EnteroLab (he's a gastro doc,--a well credentialed MD, who also has non-Celiac gluten sensitivity himself), and his website is at http://www.finerhealth.com

Gluten is in wheat, rye, barley, and can cross contaminate oats, buckwheat, etc. Brown rice is gluten-free, as are several other grains.

See the forum called Gluten Sensitivity/Celiac Disease, here at BT.

2) Gastric reflux acid-blocking meds, can cause Vitamin B-12 deficiency, leading to PN/peripheral neuropathy.

Might you have gastric reflux?

If yes, are you taking acid blockers?

What is your Vitamin B-12 blood level?

Rose can advise you, about Vitamin B-12 deficiencies (causes, symptoms, testing for, best supplements for, etc.

Also, a gluten sensitivity can cause reflux, plus, mal-absorption of B-12!

Carol
http://cantbreathesuspectvcd.com

[george]

Hi Kaelie. I have had PN for 10 yearsand have tried many pain releavers. The only med. that helped was Morphine. My pain management doctor at the VA. started me on 2 30mg.twice a day and to add or subtract to find how m uch i needed daily. In 6 months i was taking 5 twice a day. In the last year i have reduced the amount to 3 twice a day. This amount keeps my pain level at maybe 2-4. The morphine i take is a tablet and is SR slow release and i have no problems. I will pray that this or something else will help you. There is no addiction or harmful effects from the SR formula.

Trust in Jesus George