Joan, Patient

Her Personal Story

It is hard to put everything that happened to me down on paper but I will give it a try.

Approximately 2 years ago or so, around end of September or in October, I had some residual pain on the right lower side of my face. I had been treating recurrence of the trigeminal neuralgia for about a year and this was my second attack in about two years before this one.  After that I told my doctor about having some pain and he decided that while slowly reducing the neurontin 300 mg each, he would start me on trileptal 300mg each. I was still on 3600 mg of neurontin and started a prescribed dose of trileptal (can't remember exact dosage but it was gradually increased as neurontin was slowly decreasing).

By mid November, I was beginning to not feel well but still maintaining my routines and got through Thanksgiving.  But I remember that my stomach wasn't feeling exactly right. In December, I started to have some balance problems standing and walking. I would stumble to the left and to right and sway backwards and forwards. I bumped into walls and doorways and always had bruises. I also began having memory and logic problems. My husband said I had emotional outbursts and mood swings. I made a mess of our checkbook and my husband tried to fix it but he wound up taking it to our bank to have it straightened out. I was getting light headed and beginning to have some trouble eating. My friends told me I talked funny and said things. Also, I was beginning to have some trouble with my eyes and couldn't see things close very well. Words that I wanted to say, I was not able to get out. Most smells were affecting me adversely and I could even smell light bulbs, plastic in fixtures, all household odors and more. That was making my stomach more nauseous. On Christmas night that year, I fell halfway down my cellar stairs and would have gone all the way down if my nephew hadn't caught me.

By January, I stopped eating as my stomach by then was so nauseous that I just couldn't. I spent my days in bed so sick that I almost wanted to die. I would stumble into the bathroom and sit on the floor with my arms around the toilet bowl and gag, gag, gag. I was so weak that my husband would have to lift me up from the floor. I was unable to do housework, laundry, cooking, church, not anything. Towards the end of the month, I had to go to emergency for the day and have many tests. One showed such a bad urinary tract infection that they put on Cipro. The doctor said I was in a critical state and that I had to start eating something, even a little bit at a time. He to me to eat anything that I could get down or I would back in the hospital with a lot of tubes in me. I didn't want that so I went home and forced myself to get down a little of something and I had to drink a nutrition drink 3 times a day. I would see my neurologist and would be calling him when I was desperate and eventually, as he was taking me off the neurontin and reducing the trileptal, I began to feel better, although I had some short, mild episodes of depression and actually had 5 months of counseling during my illness. It did take about 5 months of that severe illness before I started to feel better. I am still taking what I call a maintenance dose of trileptal at 450 mg/day. Still regularly seeing my neurologist and am checked for balance, mental acuity and reflexes, etc. I don't think my memory is totally where it should be but it is much better.

I am busy and maintaining my health so far. I do have ups and downs occasionally but I think everyone does, just part of life. So many family, friends and relatives prayed for me and were supportive and I am so grateful for that. I feel it is a miracle that I have recovered as well as I have and I thank God for my recovery and continued maintenance of health. It also helps to have the good doctors upon whom I rely.

I would tell anyone who might read this to be cautious about taking more than one brain medication at one time for this trigeminal neuralgia. Some people may not be affected as I was but others may also suffer. I do not want anyone to experience this nightmare.

Updated 6-10-05