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Ten years' of mysteries
Wed, 01/31/2007 - 15:05Topic: New to Epilepsy.com
I'm looking for help on some very basic stuff, and from what I read in some of the other posts, so are a lot of people. I thought epilepsy was such a well-understood branch of medicine that answers would be easy to find.
My son (16) is having these weird spells, always upon waking either at night or from naps. He displays intense anxiety bordering on terror. He can speak, has full body control, etc. The episodes only last three minutes, maybe even less. He describes dark, obsessive thoughts about odd things like: infinity, or the infinitesemal, or both, unresolvable mathematical problems, etc. Generally, it is a feeling of doom, that the world is fundamentally flawed, the way he describes it.
He has had a handful of generalised seizures in his lifetime, going back ten years. His EEG has been declared "abnormal" by medical science. So I assumed these recent episodes were just a new type of seizure -- probably simple partial seizures. However, when we took him to the pediatric neurologist recently, the guy said categorically these were NOT seizures. It never occurred to me to doubt him . . .
. . . until now. Reading so many posts about people getting no help from neurologists, I guess it is time to go back to Square One.
I would appreciate hearing from anyone who has experiences similar to my son's. Do they sound like seizures?
many thanks to the group in advance
Finnegan
Comments
Re: Ten years' of mysteries
Submitted by Jimmie on Wed, 2007-01-31 - 19:09
Hi Finnegan,
I'm 21, just found out that I have epilepsy. However, I've had similar night episodes all of my life. In fact, they happen so frequently, I usually just go back to sleep. The more often they happen, the less terrifying they get.
I was unaware that this condition was related to epilepsy until recently. The emotions that your son describes are very similar to what I feel. I typically describe my episodes as a feeling of loneliness, emptiness, and distance, so that others may understand at some level. What I want to say is that I feel an understanding of the Universe at a sub-atomic level. Its terrifying, yet interesting, like a math problem.
This awareness usually passes if I get up and walk around a bit. I suspect that I don't even remember many of them. I have recently felt a very similar feeling while awake, and I believe that this was my first daytime Simple Partial Seizure. I have had a few more since then, and the feeling is similar to my night episodes.
If it helps, tell your son that there are other people who feel this. Tell him if he feels anxiety, loneliness, or terror, to try to think of the others out there like him. I know it will help me get through my episodes...
-jimmie
Re: Re: Ten years' of mysteries
Submitted by Finnegan on Thu, 2007-02-01 - 12:18
My sincere thanks to jimmie and all who have taken the time to post. It is gratifying to know that your unusual experiences are shared or understood by other people. Among other things, it makes it a lot easier to approach doctors who don't -- or won't -- see things your way. This has been a big help
Finnegan
Re: Re: Ten years' of mysteries
Submitted by yabo on Fri, 2007-02-09 - 09:10
Hello Finnegan. I was diagnosed with both simple partial and complex partial seizure disorders (Epilepsy) about a year ago, however I struggled for years with symptoms that went undiagnosed.. mainly because I didn't know what they were! I almost always start off with a simple partial seizure. Often times I awake from sleep, especially if I'm stressed or have had trouble sleeping. I immediately notice an exra amount of energy almost like extra light in the room which would normally be dark, almost immediately following this realization I have these intense accelerated thoughts. So fast that I can't make sense of anything, I usually then see pulses of light and colour and then most times I have a complex partial immediately.. I don't remember that part, I always black out during a complex partial. So your son is not alone. My auras are usually very strong and can last upwards of a minute before they end or I have a complex partial. I have also had very strong feelings of someone being behind me or the uncontrollable feeling of something bad about to happen. I have even heard loud voices coming from all areas of the room although that has only happened once and after several nights of sleeplessness due to a flu that I had at the time. Luckilly with the diagnosis made officially about a year ago I have had good luck with Tegretol, 800 Mg per day, 400 in the morning, and 400 at night. I have since changed my schedule a bit to take 200 in the morning, 200 at noon and 400 in the evening and my neurologist is talking about rasining me to 1000 mg per day to stop breakthrough aruas that still happen if I'm really stressed, really tired or have a stomach flue that prevents me from holding my medication down! Good luck with your son, I hope you find answers and a treatment that helps!