Neurontin

[Sunshine79]

I have some burning, tingling, PAINFUL problems with my feet, legs, hips and sometimes arms and hands - especially at night! It gets really bad.

I am getting a B 12 shot every two weeks (have been for a couple of months now) and taking sublingual B 12 along with Integra Plus (been taking this for at least 3-4 months now) everyday.

The doctor recently put me on Neurontin 300 mg twice a day. I was wondering if anyone here has ever tried it and if it worked for you and how many mg you take/took. Also if you had side effects from the medicine...

Sometimes I wonder if the pain part is really in my bones and not the neuropathy but I feel like a loony person everytime I go to the doctor with new symptoms (I even had to tell him about me feeling like there was something between my fingers and toes...that made me feel crazy) and I just don't want to push it and ask too many questions at one time.

Any insight will be greatly appreciated!

Thanks,

Summer

[Reba32]

have you been tested for any other auto-immune diseases?

[Sunshine79]

have you been tested for any other auto-immune diseases?

Thanks for your reply!

I haven't. What should I be tested for?

[love2travel]

Hi! I've taken Neurontin but sadly it did nothing for me. However, it does seem to work for many people so it may be worth a try. It knocks many people right out but had the opposite effect on me - it kept me wired. It also made me feel dizzy, giddy, and just plain strange. I did not like the side effects but gradual withdrawal was not an issue. I've been on many pain meds and Neurontin's effects were not as bad as some others. Has your doctor mentioned Lyrica? I had no side effects with it but alas, it did not help, either, but my pain is varied (herniated discs, fibromyalgia and so on). Hopefully you find something that works for you!

[Sunshine79]

I tried Lyrica. It made me feel absolutely drunk...even on a low dose so I didn't take take it long enough to see if it would work. I was scared to drive back and forth to work when I took it. I had blury vision and everything. I seem to be tired and weak when I take the Neurontin but then again I am only taking 600 mg a day so it could get worse if I have to up the dosage. IT hasn't helped my sym[toms at all but I've only took it for a few days now. I do have arthritis in my back and degenerative problems too and carpal tunnel so all that may be causing some of the pain. I also take Norco but I don't like to take it! Sorry that nothing is helping you, I know its really rough.

Thanks,

Summer

[Sunshine79]

have you been tested for any other auto-immune diseases?

Could you tell me what else I should be tested for? I have no idea! My doc is a PA and he is trying to learn as much as he can about this disease WHILE treating me...anything is appreciated!

Thanks!

[Reba32]

there are quite a few auto-immune diseases that could cause similar symptoms, some of them will have similar blood markers, and will be difficult for a PA to diagnose. Initial blood work that you could do would be to check thyroid levels, ANA, and RF, and to have some x-rays to look for bone deformation. Even on-going gluten contamination could cause your symptoms.

Either hypo (Hashimoto's) or hyper (Grave's) thyroid can cause pain. Lupus, Rheumatoid Arthritis, Psoriatic Arthritis, Sjogren's, and a whole host of other auto-immune diseases can cause overall body pain in muscles and bones.

Even just plain ol' osteoarthritis can cause pain and tingling in the extremities, and will be evident on an x-ray, but I don't think Nurontin would help with OA pain.

[SweetPeaAngel]

You might have Reflex Sympathetic Dystrophy (RSD). It is also called Complex Regional Pain Syndrome (CRPS). The best website to go to is www.rsdsa.org. My daughter has this disease. You will need to go to a neurologist to confirm that is what you have. My daughter takes Neurotin 300 mg she takes 3 pills in the morning and 3 at bedtime which would be a total 1800mg per day. I don't know if you have this disease but its worth checking out.

[AVR1962]

I have some burning, tingling, PAINFUL problems with my feet, legs, hips and sometimes arms and hands - especially at night! It gets really bad.

I am getting a B 12 shot every two weeks (have been for a couple of months now) and taking sublingual B 12 along with Integra Plus (been taking this for at least 3-4 months now) everyday.

The doctor recently put me on Neurontin 300 mg twice a day. I was wondering if anyone here has ever tried it and if it worked for you and how many mg you take/took. Also if you had side effects from the medicine...

Sometimes I wonder if the pain part is really in my bones and not the neuropathy but I feel like a loony person everytime I go to the doctor with new symptoms (I even had to tell him about me feeling like there was something between my fingers and toes...that made me feel crazy) and I just don't want to push it and ask too many questions at one time.

Any insight will be greatly appreciated!

Thanks,

Summer

Summer, I personally have not been on the Neurontin but if you decide to try it let us know if it works for you. I have had the same issues you are describing, found B12 just doesn't quite do the job for me. Did some reading on WSN Nerve Support which is a B complex that helps people with neuro issues, many are diabetic and MS patients. It's a bit expensive but I was very pleased when I tried them. Got to feeling real good and thought after one bottle I would go to a coenzyme B complex and my symptoms came back. Impatiently waiting for my next bottle of the Nerve Support. I would highly recommend it if you decide to go a different route.

[Meatballman]

I have some burning, tingling, PAINFUL problems with my feet, legs, hips and sometimes arms and hands - especially at night! It gets really bad.

I am getting a B 12 shot every two weeks (have been for a couple of months now) and taking sublingual B 12 along with Integra Plus (been taking this for at least 3-4 months now) everyday.

The doctor recently put me on Neurontin 300 mg twice a day. I was wondering if anyone here has ever tried it and if it worked for you and how many mg you take/took. Also if you had side effects from the medicine...

Sometimes I wonder if the pain part is really in my bones and not the neuropathy but I feel like a loony person everytime I go to the doctor with new symptoms (I even had to tell him about me feeling like there was something between my fingers and toes...that made me feel crazy) and I just don't want to push it and ask too many questions at one time.

Any insight will be greatly appreciated!

Thanks,

Summer

Before my official diagnosis of Celiac I was put on Gabapentin.A generic form of Neurontin

. This did help my burning senastions in my hips and legs.Thankfully I figured out the sensations were from celiac.Unfortunately they have returned for the last month.I was allowed to eat gluten for six weeks to rescope.While I am happy to finally have the "Gold Standard" diagnosis.The six week gluten exposure has left me with horrible burning once again.I hope with time it goes away.Hopefully yours will also with diet.

[Juliebove]

Neurontin did all kinds of bad stuff to me. I was supposed to ramp up to a high dose but wasn't able to. Made me non functional and then made me want to kill myself. Luckily there was enough of my mind left to know this wasn't rational but that was a very bad night for me. You can not just stop it either. That can cause a seizure. I had to ramp back down from it. Not something I would wish on anyone.

[T.H.]

I have some burning, tingling, PAINFUL problems with my feet, legs, hips and sometimes arms and hands - especially at night! It gets really bad.

Does your doc believe this is from gluten ataxia, or is he looking at something completely different? If gluten ataxia is suspected, something he might find of interest is your gluten-free food supply. A safe gluten threshold has not yet been studied for gluten ataxia, so we don't yet know what it is. The maximum allowed gluten in gluten-free foods is aimed at celiacs and gut damaged, not specifically gluten ataxia.

A number of people I know with gluten ataxia (and a few with other neurological issues from celiac disease) have had to go 'more' gluten free to help their ataxia symptoms. Dropping a lot of their gluten-free processed foods and going to more veggies and fruits, meats. Being careful in choosing their beans, nuts, and gluten-free grains, as these are all commonly processed with gluten grains.

It doesn't help every case, obviously, but it's unlikely to hurt, either, as long as one is eating a healthy diet, you know?

[AVR1962]

In case anyone might be interested there is a another discussion going on in Super Sensative Celiacs about ataxia and nuero issues that you guys might find helpful.

[IrishHeart]

I suffer from horrible, SEVERE burning, tingling, parasthesia--ever since the celiac was triggered in me for good in Feb. 2008. Agonizing pain. Many tests, EMGs, examinations, blood work...NO explanation for it. Some suggested small fiber neuropathy and two doctors suggest it will resolve in a few years (hopefully)as I remain gluten free. I had hoped it was connected to the B-12 deficiency I had, but that has resolved and I still burn. I have been told it is also a histamine response from the celiac. Whatever. All I know is--it makes my life hell.

Like Meatballman, it has LESSENED in the last 9 months I have been gluten-free and I pray it continues to diminish.

Neurontin is a tricky drug. I used it at 900 mgs. a day after two shoulder surgeries. Be VERY careful if you decide to stop it---ramp down slowly--- as it causes awful withdrawal. It caused me major weight gain and made me feel agitated and strange during the evening and sleepy in the day time. I was willing to try it but the side effects and the minimal relief it provided were not worth it to me.

A doctor suggested it to me recently and I RELUCTANTLY tried it and it did NOTHING for this pain and gave me the big C, agitation and messed with my head and so, once more, I decided to stop it rather than suffer MORE symptoms.

Your experience may be different. Some people swear by it for neuropathic pain.

[AVR1962]

Here is something that was posted by the adminastrator of this board in case you didn't see it: https://www.celiac.com/articles/22711/1/Conjugated-Linoleic-Acid-Protects-Against-Gliadin-induced-Depletion-of-Intestinal-Defenses/Page1.html

[irish daveyboy]

I was prescribed Neurontin for 'Shingles' which is common in immune supressed individuals (like Celiacs)

It is a Neuro-Viral condition.

I can't tell if Neurontin had any specific side-effects as I was on a cocktail of medication at the time, Celiac, Diabetes Type 2, Asthma and Shingles.

I just remembered that I was completely shattered and slept a lot (a lot like when I had CFS)