I have epilepsy


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Posted by Cathy (24.95.189.21) on August 21, 1999 at 10:40:10:

In Reply to: CH - internal seizures???? posted by Judi Mosley on August 21, 1999 at 00:24:52:

I have epilepsy, too, and have been told that chs and the seizure disorder are "somehow related", but was not given any specifics. This was told to me by a neuro at a headache seminar I went to. Not by my own neurologist.

I, personally, do not think that a ch is an internal seizure, as you descibe. Seizures are caused by an electrical malfunction in the brain.
I don't know what causes ch. Yes, many ch'ers use anti-convulsants. I have been on many anti-convulsants for almost 30 years. The meds I am on did not mask the chs. As for the chs being suppressed seizures, I would think that eventually that suppressed seizure (ch) would become an actual seizure. If a ch were an internal seizure or suppressed seizure, I would think the blood levels of my medications were too low. That has never been the case. The remission time I get between chs (from 6 months to 2.5 years) would not happen if they were suppressed seizures. I think that the chs, if seizure related, would eventually turn into the tonic-clonic (grand-mal) seizures I have had in the past. They would not disappear for x amount of time.

Yes, I do get an aura before a seizure, as Joe Stone described with the disabled he worked with. I never got depressed or anxious, however. Perhaps because there is a difference in cognitive functioning levels, there is a difference between reactons to seizures. With a cluster, I do get depressed and the mood definitely changes. I never get euphoric after a ch, tho'. After a seizure, my mood never was positive. Again, differences due to cognitive levels??? I did get very angry. I took the seizures very personally and don't take my clusters personally. Why? Maybe because of age and better understanding. I haven't had a seizure in around 20 or so years. But I'm still on the meds, still get EEGs and still have that activity in my brain waves. Supposedly I will out-grow it. Maybe if there is a link, when I out-grow the epilpsy, I will no longer have chs! But, I'm not counting on it!

Sorry this was so long, but when the subject comes up, I have to voice my thoughts.....completely.

Cathy


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