Time to haze the newbie!! Pigpile on the newbie!
Hi everyone!! My name's Glenn. I'm 33, and live in New Hampshire. This is a bit of an odd tale, so bear with me.
I started seeing various doctors for seizure-related symptoms about two years ago, after people started to tell me that they noticed me nodding off in meetings. At first, it was just "oh, you're just not getting enough sleep." This was entirely possible, since I had a reputation of being a bit of a workaholic, but when I mentioned it to my wife, she said I should see a doctor about it. So I went and talked to a neurologist, who signed me up for a sleep-deprivation EEG to be sure I wasn't having some sort of absence seizures or something. I was still skeptical, but I went. Many of you have had these tests, so you know the drill - no sleep the night before, wires on the head, flashy lights, then take a nap (although, during the first test, it was discovered that I was having trouble staying in REM sleep, which led to the discovery that I also have sleep apnea. While that's a different story, we were hopeful that it was causing the fade-outs. Unfortunately, that was not the case.)
The first EEG didn't show anything out of the ordinary. Several months go by (that's typically how long it takes to get an appointment with this doctor.) The fadeouts were becoming more frequent, only now I was starting to become aware of them in the form of missing parts of conversations. I was also starting to get migraines that would last a day or two. Occasionally, I would have these odd blackouts - one second I am just fine, the next I'm on the floor with no idea how I got there, or how long I had been there. Once I was on my way from the shower, found myself on the floor, got up, and realized two and a half hours had gone by.
The neurologist had prescribed various medications for the migraine, none of which helped, and referred me to a specialist on the other side of the state. Took two months just to get in to see this guy, during which time I was not allowed to drive. Meanwhile, the fadeouts were now turning into real seizures. I remember being in college one night, standing in the hallway talking to some people, suddenly becoming aware that there were people around me repeating "are you okay? Are you okay?" and I'm now sitting on the floor and it's all foggy.
Meanwhile, my boss is starting to get on my case, because all my tests and doctor appointments are during working hours, which means I am either missing work, asking to work from home, or calling in at a moment's notice because I have either blacked out while getting ready for work, or I woke up with a migraine and can barely function, or I am on some new medication and one of the side effects is making me too sick to drive. He always starts out with "I am trying to work with you, but..." At one point he makes me bring in a copy of all my medical records, as if he doesn't believe me, so I did. Still wasn't good enough for him. He still made my life difficult, once even telling me "it's not my rule, it's HR." I went to HR, but they told me they weren't even aware that there was a problem.
So I go in to see the specialist, he orders yet another EEG, and an MRI, neither of which shows anything unusual. The migraines are starting to become more frequent (once a month,) and lasting for three or four days, become more and more painful to the point where I can't stand light or noise, and I can't eat or even deal with people during that time. Nothing anyone can prescribe comes close to touching it. The specialist's office tries Depakote, but after about two months on that, they tell me to stop taking it because I have another seizure, so it's apparent that it isn't working. The only other thing they offer is to stick me in a room for a week where they can observe me. I wasn't too thrilled with the idea of being put into a fishbowl for a week, and I was sure that if I agreed to that, I would definitely lose my job. The other thing is, my seizures weren't happening that often, so who was to say that they'd catch one on film?
All during this time, everyone is afraid to come out and use that dreaded "E" word. As soon as they put that down anywhere official, suddenly I can't drive, my employer would have to treat me differently, etc etc. Since they can't actually PROVE it, and cannot find a CAUSE, they can't actually use that word.
About this time, the company I am working for gets bought out by a competitor. They had been talking about it for months, there were layoffs all summer leading up to the buyout, and we knew there would be more. As I expected, my boss used this as an excuse to get rid of me, so I was out the door before the ink on the merger paperwork was even dry. That was November 2001. Since that time, all my symptoms have gotten progressively worse, and I am sure the stress of being out of work has not helped my situation.
About a month ago, my wife saw an article on CNN.com about how doctors have been using Topamax to treat migraines. I had nothing else to lose, so I called the doctor's office to ask about it (surprisingly, they had a cancellation the following morning, so I grabbed it.) While waiting for a call back from the nurse who would grab some info, I called my mother, who works for a pain management office in PA. While I was down there visiting last year, I was hit with a migraine. She got a professional sample of Imatrex from one of the doctors; it was about as effective as Pez, but I wanted to know what it was so I could be sure to tell my doctor that. She was about to call me about Topamax anyway, as they have been using it on their patients as well.
I went in, and he wrote me a prescription on the spot. Probably the same ramp-up period that everyone else is on - 25mg pills, doubling the dosage each week, then changing to 100mg pills, until I am on 400mg a day. This Wednesday, I start on the 100mg pills, and by next week, I'll be on the full dosage. I certainly hope these work, because the side effects have been killer.
For one thing, I can't drink soda anymore. It tastes TERRIBLE. This was one side effect they did NOT warn me about. I bought a bottle of orange soda and returned it because it tasted awful, then bought a bottle of Coke and it too was bad. Turns out it was ME, or rather the Topamax. Oh well, I'll drink water, Cool tea and Snapple instead (it says you're supposed to drink lots of water anyway... good ol' kidney stones!)
For the first few days after changing the dosage, I feel really tired. It goes away, though. I also have much less of an appetite, which again I can deal with, as I can afford to lose about 20 pounds. What I really could do without is the nausea and the general disorientation I feel on the weeks when I double the morning dosage. I had to go to a friend's wedding this past Saturday - I musta looked like I was drunk! Fortunately, everyone I know is familiar with my situation, so it was no big deal, but I wasn't able to drive and I really felt awful. :/ I also have a tingling sensation in my fingers and feet, usually after I have been doing something like mowing the lawn or vacuuming. (Sounds like a neat excuse to get out of doing housework, neh?)
I haven't been on the stuff long enough to know if it's effective, but I really hope this stuff works. I'm running out of drugs!
Anyways... sorry for rambling on... thanks for letting me join in the sandbox!
Doc
Hey, all... new to the board... 
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