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Quote:

Originally Posted by 0357 (Post 720100)

I was prescribed Neurontin/Gabapentin and twice I had a build-up in my body and overdosed. Landed in the hospital for 3 days each time this happened.

The first time, my dosage of Neurontin/Gabapentin was cut in half to 900 mg daily. I wasn't in touch with reality for 2 days. The second time I overdosed I was taken off Neurontin/Gabapentin, Klonopin (addicting like Valium, etc.) and Tramadol.

I went through withdrawal and the overdose for 3 days. I couldn't tell my hallucinations from reality. I was told by my doctors Neurontin travels by your nerves and MS affects your nerves thus the build-up then overdose. I was told it was most likely the Neurontin/Gabapentin causing the problem over and over again by different doctors.

I do not agree with giving Neurontin/Gabapentin to MS patients. It's a new drug and too has side effects of different types of cancer I recently found out. In my experience, it also caused bowel incontinence.
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MS has its ups and downs and it is hard for symptoms to show up on these tests. Have patience and hang in there...come here for information and support.

MS affects everyone differently. I've had MS since '92; it was very active my first 4 years. Since, I haven't had an attack since '96 and have slowly gained back lost ground. I must pace myself but am still walking. My 3rd and 4th year of MS I used a w/c.

Take care.

I had my own personal horror story with Neurontin. I never expected the withdrawal from that medication to be so severe, but it most certainly was. Worse than anything else I've tried and tapered off. Scary stuff, and it didn't help me or my symptoms (pain notably).

Clonazepam (for burning mouth) and Cesamet for neuralgia (pain and burning in my head). Seems to be my winning cocktail. :cool: I seem too to have notably fewer Trigeminal Neuralgia attacks on these medications, and if I do have cranial nerve pain/attacks, they're lessened in severity from what I endured previously, and shorter lived.

I didn't even know you could OD on Gapapentin. :eek: That's scary stuff.. but it might explain why Carbamazepine is on the routine blood work 'sheet' from the city hospital here - another anti-convulsant like Gapapentin (Neurontin). I had actually asked doc about that and she said, "Yes, it's blood screening for the drug". I thought that was weird until I read your account about Neurontin and overdoses.

(PS: Carbamazepine was by far the scariest medication I ever ingested. I don't want to ever go back to that, it didn't do a thing either).

Quote:

Originally Posted by dmplaura (Post 720119)

Clonazepam (for burning mouth) and Cesamet for neuralgia (pain and burning in my head). Seems to be my winning cocktail. :cool: I seem too to have notably fewer Trigeminal Neuralgia attacks on these medications, and if I do have cranial nerve pain/attacks, they're lessened in severity from what I endured previously, and shorter lived.

You probably know Clonazepam is Klonopin -- it is addicting too and has withdrawal symptoms as well. When I was abruptly taken off Neurontin, they took Klonopin and Tramadol from me as well.

I was on 3mg Klonopin nightly to help me sleep and the Tramadol I took every 6 hours for pain. Tramadol is not a 'regulated' pain medication however.

Thanks for sharing your experience. I find it interesting but scary at the same time.

I was put on Neurontin as a last ditch effort to control my being Bipolar. Neurontin did not help with my MS spine pain nor did it do much in the way of my Bipolar problems.

Take care.

This is interesting, about Gabapentin. I took its cousin, Lyrica, one pill when I was recovering from Shingles a couple of years ago. The Shingles was in my hip, leg, foot, and I could barely walk when I got out of the hospital. The pain was more intense than anything I have had. So I hoped I could get off Demerol and get on the Lyrica.

Very bad results! Perhaps due to the problem you describe, of the drug traveling in the nerve, which is damaged, and building up! My reaction was to feel my breath constricted, you know, like we do sometimes. This was so bad that I just waited until the drug wore off and never took another one. One pill and out! Back to Demerol until
the Shingles was healed.

Quote:

Originally Posted by Dejibo (Post 719016)

I had sensory problems for about 20 years before I started to have some issues with balance and vision. it was frustrating because every MD i mentioned it to thought me to be whiney and looking for drugs or a way to quit work. I LOVED my job and was quite upset when I was forced to stop working. I simply knew something was wrong and wanted to know why.

Sometimes in this life, we get to know why. A car runs over our foot and its painful. we get to know why. A loved one developes a disease and fights for their life. we dont always get to know why. Some folks die from cancer and some folks live. We dont always get to know why.

Its very hard to sit "in the meantime" That period of time that is neither here, nor there. its in the meantime that we learn our greatest lessons. Lessons of patience, lessons of research, lessons of tolerance, lessons of strength to stand up and refusing to be dismissed anymore. Lessons of lonelyness and not fitting into the left or the right. its a time filled with strife, and grief, and frustration. I hated the meantime. I wanted answers! and I wanted them instantly. Why me?! Why now?! I struggled hard against the meantime. now that I look back, it was rich with lessons.

I hope you are able to get some answers soon. its frustrating to not know for sure. :hug:

Thank you for your profound reply. You are so right about the lessons one can learn from this, I do see it clearly in my life since this started. You are also right.......sometimes we don't get answers for a long time, sometimes there are no answers to things that happen in this life........very true.

People with sensory symptom onset (other than vision)

Quote:

Originally Posted by dmplaura (Post 719223)

Diagnosed in 2008, neuro figures I'd had MS at least 5 years at diagnosis. So now we're going into 2011, and I've yet to experience motor symptoms.

Not everyone with MS, or neurological symptoms, will experience motor symptoms. Mine, other than my blurry or doubled vision, are all sensory.

The way I'm going with my disease course thus far, I can't see me experiencing motor symptoms. It COULD happen, but there's a strong chance it won't. So I don't worry about the 'what ifs'. :)

I do hope you can find your answers and get on the right course of treatment to help ease the symptoms you are feeling. :hug:

Did you have sensory all over body or just in certain area?

Could you describe sensory symptoms:

Thank You.

Quote:

Originally Posted by invisable (Post 720519)

Did you have sensory all over body or just in certain area?

Could you describe sensory symptoms:

Thank You.

I've had, in relapse, periods that my whole body's been 'affected'.

Sensory for me involves burning sensations, mostly from the neck up. This includes the left side of my head/face (occasionally the right, majority of the time the left), and my mouth. These are 'consistent' symptoms that never fully leave me.

I also experience decreased smell/taste, which can change day to day, minute to minute. There's no rhyme or reason. Yesterday, I had a good 'sniffer' day (could smell well, and as a result taste well).

I do have little symptoms come and go that remind me of MS otherwise. I have a spot on my right leg that feels at times like I've dropped water on my leg, or I get a buzzing sensation on the bottom of my left foot.

During a recent stressful period at work, I could feel, from the hips up, a burning throughout my entire upper body.

In relapse, I've had many different symptoms, L'Hermittes sign and girdle-banding were the 2 that were my 'hallmark' MS symptoms. I've had all types of pins and needles, burning, humming, you name it. It's difficult to explain the types of sensations, I told my neurologist L'Hermittes was like someone was strumming a guitar string against my bare back each time I bent my head down (not to mention I felt like a wizard due to the electrical sensation going through my hands. I half expected to begin launching magic missiles).

I have the double/blurry vision (another remaining symptom). In relapse, I went through 2 periods of extreme vertigo.

There's a million different symptoms MS can cause. It's important too to remember that my symptoms could be applied to another disease or condition, as there's many mimics to MS out there.

Thank you for your informative reply.......

Quote:

Originally Posted by SallyC (Post 720721)

Good post, Laura.:)

I can relate to many of those sensations.....

I just wish someday I could actually see or feel real water running down my leg......it would be such a nice surprise!!