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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by MM on July 26, 2001, at 23:54:13
After reading quite a few posts about TLE, and reading about the symptoms, I'm REALLY wondering if I have it. If I take neurontin now, would an EEG down the line show anything? Or would the neurontin somehow change any results, even if I am not on it at the time of the test? Like if I want the test, should I get it before taking neurontin? Should I talk to my Pdoc about this or a general practioner? Or do I need to find a specialist on my own? Also, can dissociation be a symptom?
Thanks.
Posted by Zo on July 27, 2001, at 23:27:42
In reply to Questions about TLE (Zo?), posted by MM on July 26, 2001, at 23:54:13
The one thing I've come across most often in my reading on the web from people with TLE is how frequently it does not show up on an EEG -- mine didn't either, despite the fact that I'd stayed up all night and was "seeing snow" by morning. Now, if they'd exposed me to flickering lights. . . but photosensitivity is relatively uncommon. And my experience of neuros, backed up by my pdoc, is that the variable and subtle symptoms of a temporal lobe seizure are likely to get you laughed out of the office.
I diagnosed my own by the backwards method of being given Neurontin for pain. . .and watching some distinct lifelong "funny spells," which pretty regularly occurred towards 5:00 pm, disappear. . .and as they disappeared, I was able to describe them more clearly to my pdoc. That and some reading. . .Got ahold of the book Seized, which is out of print, but recc. highly on the Mass Gen Neuro board, and that clinched it.
One way I know if I am "seizurey" is if my eyes slip out of focus. . .it was thought I had lazy eye when I was little. Who would ever connect that with seizure? Except I knew it happened when I watched fire, or other flickering or disappearing light - like Flash animation (!)
My pdoc, being a specialist in meds, is way qualified to help me with the TLE part of my dx. Not surprisingly, I am also BP II and have migraine. To my knowledge, Neurontin is good with TLE -- and really beniign compared to the older anticonvulsants.
Hope this helps,
Zo
Posted by MM on July 28, 2001, at 2:49:20
In reply to Re: Questions about TLE (Zo?), posted by Zo on July 27, 2001, at 23:27:42
Thanks Zo. So it's kind of pointless to get an EEG? I read the neurontin thread and mine gets worse w/ sleep dep, I see snow, especially with light changes (light to dark), my eyes slip out of focus all the time, I see auras, and I know this sounds nuts but I feel my brain like twitch or something, kind of like a pain but not really. I guess I'll just try the neurontin and see if it goes away. Thanks again.
Posted by Zo on July 28, 2001, at 23:43:16
In reply to Re: Questions about TLE (Zo?), posted by MM on July 28, 2001, at 2:49:20
*Nothing* sounds nuts to me, after so many years undiagnosed. And I have felt brain twitches during thunderstorms, and have had painful gnawing sensations.. . .As for dx, it depends I guess on how bad you need or want it, because you're probably going to have to work for it. . .!
Zo
Posted by Zo on July 29, 2001, at 0:41:15
In reply to Questions about TLE (Zo?), posted by MM on July 26, 2001, at 23:54:13
Hope this helps.
"Possible Temporal Lobe Symptoms"
http://www.pni.org/neuropsychiatry/seizures/ptls.html
Posted by MM on July 31, 2001, at 0:18:35
In reply to Re: Questions about TLE (Zo?) » MM, posted by Zo on July 29, 2001, at 0:41:15
Zo, did you ever get an MRI?
Posted by Zo on July 31, 2001, at 0:33:22
In reply to Re: Questions about TLE » Zo, posted by MM on July 31, 2001, at 0:18:35
Haven't yet. . .The TLE is pretty damn well controlled, and fairly mild from what I read. Higher priority problem: getting BPII under control w/o getting fat(er) or zombified. Losing 40lbs of Zyprexa weight.
In the end, because it's not severe, for me, an MRI seems a bit like going to the Amen clinic. So I've a lesion. . .I've had this since I was a small child, so what else is new.
Some have it so bad, they have to have surgery!
Zo
Posted by MM on July 31, 2001, at 0:44:31
In reply to Re: Questions about TLE , posted by Zo on July 31, 2001, at 0:33:22
Ya I see your point. I was just reading and it seems like an MRI would pick up things an EEG can't. In a way I hope it turns out epilepsy is my problem, cuz what friend or family member could fualt me for that? Or say, there's nothing wrong with you, you just don't brush your teeth in the right direction (add whatever other advice people have here).
This is the end of the thread.
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