Why are many of you on Neurontin?

Sylvia,

Neurontin is given for the pain. Lyrica is the same, however is much more expensive and is specifically for nerve pain. I started Lyrica and was on it for just over a week to try to help the pain in my hands and feet, however the side effects were too bad. Long story short 🙂

If you had nerve pain, trust me you would know. At my worst, the first 2 1/2 years being strictly in a power chair, I would beg my neuro as well as my husband to have my feet amputated. The pain was so severe that even with 3600 mg of neurontin daily I would still be in excrutiating pain in my feet; there would be tears coming down & I wasn’t even aware of it. I wasn’t even walking or putting any pressure on them at that time. It hurt to even touch a toe to the floor, or to even touch my feet at all. But I had extensive nerve damage to my feet & to this day I still do.

I couldn’t even imagaine 1/2 a day without neurontin now. I don’t think I would take it just for tingling, however, as it does cause some drowsiness & possibly “brain fog.” But for most of us it is a necessity of life.
Pam

Sylvia> I am like you, I had the needles and pins and numb feet and hands, zaps and zings and recently the burning and now feels like an electric current running thru my hands. If I touch peoples faces they say it feels like touching a water pipe with water that is quickly running thru it! I have never had to take any pain meds either……I do have back pain but I get that if I do too much or stand too long in one place. Muscle pain the Motrin has helped me. I injured my shoulder in the hospital after I fell. Staffed picked me up by my arms. That took 8 months to heal. Even now I can feel it. But I am slowly getting better. Did you get the vibrating in the muscles? They flutter or idol like a car engine. Mine is strong enough I can not feel my cell phone when it is on vibrate. It just blends in with my body vibrating. Take care of yourself.

Sylvia,
I agree with you, I found that the benefits of nuerontin do not outweigh the side effects and therefore no longer take it. Although there are some people I have talked to who swear by it. I guess you just need to do what you are comfortable with.

sylvia’85 I like to think we are a very special bunch! To understand this health problem and pass on our experiences. Look for someone with similar symtoms is just a relieve. Yep we are weird!! I laugh all the time trying to explain what and how I am feeling. I agree with the residuals are worse when I am tired. My personal alarm that tells me I am over doing it! I have to say that the vibrating has decreased alot just since January of this year. I am able to do so much more and the fatigue is less too. I think all that vibrating used up so much energy. Today I am having a good day! Only tips of fingers and toes have that funny feeling to them and swelling is down some today also. Even took the dog for a walk today! Thanks for sharing information, hope it helps others see there are more good days ahead than bad ones!

Happy Father’s Day, Guys!

Hi Sylvia,
Had Neurontin durring the recovery time of gbs for my legs because I had tremendous nerve dammage and was told neurontin helps with the pain and repair of the Mylene scheath. (protective covering over the nerves). I hated taking pills and didnt find it helped with the pain so I stopped taking it after a year and am still taking pain meds for my leg pain. Take care

neurontin was a godsend for me. works for some, not for others. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Sylvia,

I used to take neurontin (a long time ago). I’ve been off/on Amitrtyptiline and except for major weight gain, was fine. I tried Cymbalta last summer – no good for me with side effects. Just recently went to neuro for re-evaluation after 10 years and he commented that my vitamin B12 was on the low side. Thanks to Carolyn here, I have been taking some great vitamins with extra B12 and feel much better. Only when I am really tired or exhausted do I take the amitrytpiline to stop the extra buzzing.

So you might consider looking into a good multi-vitamin and see how that helps you. Sounds kinda simple, doesn’t it?

The one thing I could never do without is my heating pads. As I begin to unwind watching TV in bed, I have one on my freezing feet (no matter what time of year) and one on my lower back.

Yes, we are all a strange bunch :rolleyes: but we sure love each other a lot!!!

Nate has been on Neurontin since his diagnosis in the hospital, 18 mos ago. His original Neuro told us that he would need it for the large amount of nerve damage that he had.
It is a nerve pain blocker that has to be in your system all day and it also has to be increased in stages to reach the best amount for each person’s pain.
Nate does not seem to have any particularly noticeable side effects.
His new neuro dr. has increased his Neurontin from 900 a day to 2400 a day.
Is is helping his hands a lot. The pain and shaking was pretty bad before.
Nate has also been put on Tramadol 4 times a day now and that is also helping with his back pain.

Trudy, natesmom

I am on Lyrica and it is wonderful for me. I had a new problem the other day. I went to church (Haven’t been able to because of staying with mother-in-law) and I noticed my joints were stiff and I moved around. Suddenly I felt like I was rock back and forth from my waist up. I wrote a note and ask my husband if I was rocking. He said only my head and I couldn’t stop it. I took that I was overtired sitting there in that one position for so long. Any of you have any ideas GBS/MF 1987