February 1, 2011 at 12:19 am
I had a severe case of GBS in March 2010. I was on Neurontin (Gabapentin) for a long time and it did nothing for my pain. My doc has stopped the Gabapentin and we are trying to get Lyrica. (Still fighting with the insurance for approval) However, I need something for the pain in the meantime. Is there anything at all, that I haven’t tried that worked for you? It is really becoming unbearable and I am just miserable.
Here’s what I take now:
Ritalin – for my fatigue since my insurance won’t cover Provigil. Works great!
Tramadol – This doesn’t help me at all. But I keep taking it anyway.
AnonymousFebruary 4, 2011 at 1:29 pm
As of today, Feb. 4th, 45 people have viewed your post yet none of us have answered. Hmmm….?
I’ll answer your question indirectly, heck, my wife says I always do. Answer indirectly, I mean.
My first choice of meds is none of those you are taking, although I have taken some of them, I weaned myself from them as rapidly as possible.
Of course, it’s only my opinion, but the sum of those meds on your list sounds toxic to me.
I reckon I would jump through any kind of hoop to avoid ritalin. When I get fatigued, I take a nap. Last thing I want is a chemical stimulant that is habit forming, likely requires that I take more and more of it and may cause unusual changes in behavior in addition to my existing problems. On top of that, I reckon the fatigue is the body’s way of saying ‘hey, that’s enough, don’t overdo it.’
I prefer the somewhat unpopular ‘natural’ supplement route. Folic acid, B-vitamin complex, in particular B-12, Broad spectrum L-Carnitine, Broad spectrum Magnesium, fish oil and CoQ10. I no longer take folic acid, but I did for awhile. Of all those, fish oil and CoQ10 are the ones I don’t want to go without.
But, I don’t suffer the extreme ranges of pain and tingling that some of you do. In those days when I did suffer higher pain levels I used narcotic, or near narcotic meds plus Soma (carisoprodol) for muscle aches and pains. Seems to me my days on Lyrica were unremarkable, pain wise. I no longer take it either.
Best wishes on your recovery which ever route you take.
AnonymousFebruary 4, 2011 at 3:32 pm
I am coming up to the 15 year anniversary since I got G.B.S, a very severe case, I was not expected to live, but I did.
I have been on all of the drugs you have listed, as well as tegretol, many morphines, all new drugs in the past 2 years, even one for Parkinsons disease. I have severe nerve damage, so the pain is bad, and the pain has many triggers. At one time, I was taking 16 pills per day. In the last 2 years, I have studied the world of essential oils, and all kinds of natural healing, but could not find the magic combination so I could stop all medications. I have finally found what works for me, and my system. I take 60 mg. Teva-Morphine SR every morning, and I take 200 mg. of Elavil every bedtime. My pain is easily triggered by low-pressure weather systems, and on the days the pain gets very bad, I take an extra 60 mg. of the Morphine. I try very hard to do the “mind-over-matter” thing in my head, as I do not want to take any higher doses of Morphine. And as most people who take these meds know, one of the greatest side effects is constipation. Sometimes it is stuck in me for 3-4 weeks, which is very dangerous. I have tried so many natural and medicinal stoll softeners, laxatives,eaten tons of high-fiber with tons of fluid chasers, prunes, etc., but have only rare success with them. Whe Xenical first came out, I was reading what the side-effects of this drug, and came across that it can cause very loose stools, so convinced my Doctor into letting me try it. It does work well, as long as you eat alot of fat, but is very expensive, and even though I told Insurance that I was not taking it for weight-loss, they still would not cover even a small portion of the cost, so I only use it every now and then.
AnonymousFebruary 4, 2011 at 3:37 pm
I should tell you today is february 4, 2011, as I see the question was posted a long time ago. I just joined this Forum yesterday, february 3.
I would be happy to discuss any questions I could answer.
I, also, could not understand why this question had no answers given to it!
AnonymousFebruary 4, 2011 at 8:20 pm
I have not answered because I am 5 1/2 years post GBS and I no longer take any medications for GBS pain. I do not have any particular pain any more. I still get muscles twitches and the zinging feelingings but they do not hurt. I fatigue more easily than berfere, but I have adjusted my lifestyle to accomadate that issue.
I pray that you find the comination of medications that works best for you.
GBS May 2005
AnonymousFebruary 5, 2011 at 3:08 am
I take Cymbalta, but need more than the usual dose to settle the pain. The higher dose makes a huge difference, but it is a “once a year” fight with insurance to cover. My insurance did not ever cover Lyrica and it did not work as well and eventually did not agree with me. I also take L-carnitine and acetyl-L-carnitine and coenzyme Q10. I take flaxseed oil, but this is not for the neuropathy; it is for the heart and blood vessels. Most of the time on this, pain is pretty well controlled. tonight was one of the tough times where my legs hurt too badly to go to sleep for a long time, but these are pretty rare now (four years into this) and this week I missed some doses of these because of staying extra at the hospital where I work due to the severe ice storm we have had. (My front yard still looks like an ice skating rink–it is pretty amazing–and the roads are still dangerous).
I also take Sinemet which is a Parkinson’s drug and this also has helped a lot although my neurologist’s cannot explain it. Annastasia15, is this what you took–levodopa/carbidopa? I helps me to walk more normally (not normal, but much better).
WithHope for a cure of these diseases
AnonymousFebruary 5, 2011 at 9:37 pm
Yes, that is the Parkinson drug one doctor put me on, then when I changed doctors, the new one thru a fit that I was taking it. I had to stop taking it then, but after being on it for a few months, it was not doing anything anyway.
It was exactly 5 years to the day-Valentine’s Day, when my G.B.S began-when my teen daughter was diagnosed with a rare type of cancer.During her illness, is when I discovered Gabapentin, and was on it for a few years, but I did not like how drugged I always was, so Gabapentin was one of the drugs I was taken off of.
My daughter was so brave, she fought her cancer very hard, for 19 months. She took her final breath, I could feel it on my cheek, on September 11, 2002. I miss her so very much. I will always wonder why it was my life that was spared, and not her’s. Parents should never have to bury their children.
February 7, 2011 at 10:51 am
Thank you! I have a 9 month old son, the fatigue and nerve pain is starting to take a toll on my body. I had a EMG AFTER my GBS and I have a lot of nerve damage in my hands and feet. I had a severe case of GBS and was also not expected to live. I will take these ideas to my rehab doctor. Thanks.
AnonymousFebruary 7, 2011 at 1:07 pm
Congrats on your baby boy! It sounds like you had it as severe as I had G.B.S. It will be 15 years for me this Valentine’s Day, I spent 15 weeks in the hospitals, 6 in the I.C.U on a ventilator. I have severe nerve damage in all of my limbs, and I also got Bell’s Palsy, which shows up when I am tired.
Because we have electricity in our bodies, when it is summer, and we get lightening storms, it causes me alot of pain, it feels like the lightening is hitting my body-my Neurologist explained the science behind this-and even if I step on a cord from a lamp or whatever, it will feel like my foot is being “lit-up”, also weird but true science. When we get low-pressure weather systems moving in, my nerve pain gets worse with them, just like some people get achy bones and joints.
There are many other triggers that I watch out for, it makes any long term plans hard to make, as I never know what kind of day I am going to have.
About 3 years ago, I finally bought a new bathtub, nor a Jaccuzi, but an air-jet bathtub installed. I knew from being in re-hab, how comforting the water-therapy was for me, so when I saved enough, I bought one, and it sure does work for me, very relaxing, and the jets of an air-jet do not cause any pain.
I also sleep on a warm and comforting water-bed, which also helps my pain.
I have learned over 15 years, what works for me and what doesn’t.
I hope some of these “solutions” of what works for me, can work for someone else.
4 years ago, I had an accident, but what further damage to my nerves was done, is another long story, so maybe I can find a place on this forum somewhere to tell it.
AnonymousFebruary 7, 2011 at 4:18 pm
Annastasia, I am so sorry for your daughter’s loss. That makes me very sad. You are a brave, strong woman to have endured what you have. As for the pain, I am still searching for the magic combo, but have only taken supplements like others mention. I am very sensitive to meds……
AnonymousFebruary 7, 2011 at 6:51 pm
Thanks for caring, it does mean alot to me:)
I am so sorry that you ended up with G.B.S from getting the vaccine, it is not fair, this awful illness we all have gotten.
I always try to tell everyone that crosses my path, about the chance of getting G.B.S from any vaccines, especially in flu season. As the public, we are not told about the chance, albeit small, of getting G.B.S from a flu shot, and even if it is a mild case, we should still be given the warning, so we can research it, and make our own minds up about getting the vaccine.
I am pretty sure that I got mine from the bacteria that is in most of the poultry that we eat, as getting it from that is when the cases are pretty
severe, with the most damage, and more lasting effects.
I also tell people about eating poultry that has the bacteria that can cause G.B.S., but I must be careful, as the people who raise and sell poultry would be very upset with me for spreading that fear to people.
G.B.S in any severity, can change a person’s entire life.
I hope that by reading about the meds we all take, that something will work for you. Keep positive!
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