Discussions By Condition: Nerve conditions

I'm scared-don't know what's wrong/what to do

Posted In: Nerve conditions 0 Replies
  • Posted By: Anonymous
  • October 18, 2008
  • 05:29 AM

I've had Fibromyalgia and Reflex Sympathetic Dystrophy for over 20 years. I took 3200 mg/day of Neurontin for several years and finally quit taking it on my own about a year ago. I had a fantastic memory prior to the Neurontin, but I decided it was worth some of the short-term memory problems because the chronic pain was so intense. I had hoped that my memory would have been recovered, or, at least, not get worse when I quit taking the medicine. Unfortunately, it hasn't and things are getting worse and I'm a little scared right now. (Please note: this is not a post against Neurontin, it helped better than anything except surgery.)

My kids noticed about 5 years ago that I occasionally said something "weird." Maybe, instead of saying "child,” I would say "dog". I was on Neurontin at the time and it was sporadic. I mentioned it to the doctor once and he did one of those memory tests. I did okay so I just let it go.

I also was temporarily on disability due to an accident and thought some of my speaking problems might be related to being away from people since I wasn't working. It seemed like I had trouble concentrating when talking and often "lost" my place in the conversation or went off on tangents.

Over the last 5 years, these things have gotten worse. My teenage daughter lives with me and she often catches me saying some oddball thing that doesn't go along with what I was saying . I also forget what I was saying quite a bit now. I have a tendency to call shows by the wrong name like repeatedly calling CSI, Miami Vice. Part of the problem is that I'm almost completely unaware that this has happened. Usually, I don't know unless someone says something. I know this has happened at work too which isn't good at all.

The scariest thing is that there have been personality changes like yelling, cussing, calling my daughter mean names, giving odd discipline/instructions, etc. I actually took my daughter's Bible and grounded her for two weeks from reading the Bible, which is so very out of my character. I have no, none, zero memory of these things. I don't remember thinking them or doing them. In fact, I don't even know they've happened unless someone tells me. Obviously, this is not fair to my daughter and it's hurt our relationship. It's really scaring me now.

In addition, I've had occasions where I forget where I'm driving or suddenly get scared because I'm not sure if I'm going the right direction. I forget if I've soaped/washed while I'm in the shower so I re-wash just in case. If my deodorant isn't in the bathroom, I tend to forget it.

I'm not depressed. I don't drink or do drugs. I work 30 hours/week, home school my daughter, and attend church and church activities regularly. I do suffer with chronic pain but manage it as best as I can. I don't sleep well and used to take 4 mg Zanaflex (when I had insurance). I'm not quite 45 so, theoretically, I shouldn't have dementia, Alzheimer’s and such.

I haven't gone to a doctor in about a year because I've been without health insurance. I just qualified for insurance but I'm not sure what it does/doesn't cover and I'm scared this could be denied because it's pre-existing.

Any suggestions, ideas???
Thanks very much.

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