EEG- The results

[Buffheart]

Finally got the results of my EEG today. The doctor said everything is normal. This confuses me because after the deep breathing my whole body started to shake and I had some twitching in my hands/legs as I was falling asleep. The EEG techs even noticed. Is it possible that the EEG somehow didn't pick it up?

I'm also moving next week and I'm a bit concerned. Part of me says to get a neurologist when I move, but part of me almost wants to give up because nobody (except you guys) believes me. My doctors don't believe me, my parents don't believe me, nobody believes me. They all think I'm making stuff up for attention or that I am making excuses not to do things like driving. I've seen three neurologist's since 2009 and none of them has helped at all and two of them were quite rude to me.

This last neurologist says it's migraines despite the fact that I haven't had a migraine since August and several of the things I talked to him about aren't associated with migraines. He even told me so himself. I'm just not sure what to do anymore. I know something isn't right, but I seem to be the only one who believes me. So do I keep fighting or do I just give up like everybody wants? Decisions decisions.

[Meetz1064]

And start a journal to document everything.

When do the events occur the most often? After you've eaten something specific? After exposure to specific types of lights? Lots of stress?

Start documenting things, and watch for patterns, then take that journal to the doctors, and go from there.

[Krista2882]

It's possible that the EEG didn't pick them up. I had a 4-day video EEG and at the end of it my doctor told me they only recorded a few of them. I asked her why and she said that some seizures come from too deep within the brain to be detected.

[Buffheart]

Meetz- Thanks to the helpful folks here I found a handy dandy iPod app that I was using to record everything. At one point I was recording close to 100 of what I thought, and still think, are seizures, but I kinda stopped because it was happening so often that I became annoyed with constantly having to whip out my iPod. And those were only the ones I recorded! There were many more I forgot to record.

And a very nice person here sent me the info for her neurologist, who is located close to where I'll be moving. Maybe I'll contact her (the neurologist).

Krista- Thank you I had heard that but I thought that was rare.

[Nakamova]

With the administration of single, awake EEG, the rate of false negatives for folks with epilepsy is 50%(!). However, for a combined awake and asleep recording, the rate of false negatives is 20% (which is still pretty high -- that's 1 in 5 that will come up "normal").

[Buffheart]

Thanks Nakamova

I'm sorry if I sound negative today. Thinking back I realize maybe I was a bit more harsh on my neurologist than I should have been. I understand why he isn't going to do anything now. It might be dangerous to put somebody on a new medication just a few days before they move. I just hope that after I move I won't have to go through all this testing and such all over again. At least not for awhile. What with the Holidays, a move, college soon, and lots of doctor appointments I'm so overworked right now.