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Re: Interesting chat w/sleep lab people

Posted by GBoogie on January 24, 2003 at 22:01:55:

In Reply to: Re: Interesting chat w/sleep lab people posted by permagrin on January 24, 2003 at 18:35:51:

Thanks for your kind words.

Mike is lucky to have you, too.

Back to epilepsy. My brother has mitochondrial disease. It's extremely rare but one of the symptoms is epilepsy. During his most recent hospitalization, one of the covering neuro attendings on a weekend took the time to discuss one of our area's comprehensive epilepsy centers. (It's the largest in the US and it's here in NYC.) Anyway, she said that she had patients that were difficult cases, but they went to this particular CEC for a Video-EEG and the results were jaw-dropping. The video-EEG means they hook you up to an EEG and keep you in the Center for days. Usually 3 days minimum. They even ween you off your anti-seizure meds so that they can 'catch a seizure on tape'. Supposedly most epilepsy doctors are forced to play trial-and-error with medications and dosages, but the vast information from a video-EEG allows a much more precise match of patient to anti-seizure medicine and dosage.

Considering that most of Mike's problems seem to be nocturnal and he has probably not had an EEG done at night, the video-EEG might make a lot of sense.

There is also a 24-hour EEG, I think. Tech wires you up at your house and returns to your house 24 hours later. In the meantime you wear a gizmo around your waist to record everything, but go about your life. Watch TV, fall asleep, babble about cookie dough, etc. UT runs a fairly big one at Parkland Memorial Hospital in Dallas. Check out their website, it's pretty cool.

I think the ENT appointment is worth going to, but I wouldn't undergo some of the surgeries I've read about. Septum, tonsils, turbs and trach are about all I'd consider, but that's me.

I don't know what your financial situation is like, but if you can afford an autoPAP, I think they are great to provide feedback. Even though Mom isn't better yet, I wouldn't have noticed the correlation without it.

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