The Epilepsy Monster

[jonzen]

Hello, this is my first post on the forum.

Yesterday afternoon I invited 6 prominent and interesting Ladies up to my loft for tea. Many for the very first time. Everything was ready. Then, just as the first new friend arrived, I went into a "petit mal" or something akin to that. It was typical in nature to others I have experienced.

I actually sometimes hear the singing of birds! I cannot always understand what is being said by others around me. I cannot speak at all or very well, only if lucky a few words. I cannot read anything, nothing makes sense at all, totally foreign. And then slowly it goes away and I regain some ability to speak and read, but it is often very tentative in feeling.

This happened yesterday and today I feel so embarrassed and kind of sad about it all. I had hoped to help encourage great conversation and suggest topics of exploration within the group in attendance, but of course, I was hardly able to do anything except pour tea! :shock:

I have had a mild cold all week and wonder if any of you have noticed a tendency for more seizure activity when you have a cold or flu? I assume the answer may be yes?

Do you ever hear what sounds rather like birds chirping when you have a petit mal?

Hope to hear from you!

Jonzen

[Bernard]

I have noticed that Stacy (my wife) tends to be more prone to seizures when she is feverish or ill with a cold/cough. She is also taking 300mg Dilantin with a similar seizure profile to what you have described in your introduction thread.

When your immune system is down, your body is stressed and I guess it lowers the seizure threshold as well. It seems to in Stacy's case anyway.

Last night, Stacy and I were over at a small Halloween/poker party and she had a very small petit mal seizure late in the evening while we were playing a friendly game of poker. I think only one person at the table besides me noticed it happening, and most were surprised when I talked to her through the brief post-ictal period until I knew she was functioning normally again.

[jonzen]

Bernard, how wonderful for Stacy that you are there for her! I have lived with this Epilepsy challenge pretty much by myself for most of my life. Often people do not know what to do if I go into a petit mal, and, of course, if the people around me are aggitated, the seizure is usually prolonged or even taken to a more serious level. I have instructed those around me whom I see often...like my personal trainer...in what to do and what not to do when I go into seizure. Today, my first day back to the gym in a week since my chest cold, he was very careful with me, asking me where I was on the seizure scale during repetitions. This helps me quite a bit, just knowing that someone cares enough to work with me. I am sure Stacy must feel so thankful to have you working with her in a partnership.

I greatly appreciate you sharing with me your knowledge of Epilepsy. I hope that by adjusting my diet even further (I am Vegan and do not eat wheat or white rice very often.....try not to eat sugar) that maybe I will gain more control over my seizure activity. I am meeting with a naturopath kinesiologist friend on Wednesday afternoon to go over some possible adjustments to my diet.

Thank you for writing,

Jonzen

[Bernard]

No problem. That's what we are here for.