I’ll look around for other people on disability that might be able to provide some info. The only person I can think of off hand who might know about it is @Dave44. I could be wrong, but he might have info. ??? I’m sure its very frustrating. So much work. So complicated.
Hehehe, I can kinda tell you some stuff about seizures, but its not my real area of expertise and no one has memory of grand mal seizures (the big ones that freak people out) because you loose consciousness with those. I think I’ve had most types of seizures, I think, because I have lower left lobe epilepsy. Thats where they start in my brain, but then the goofy electrical energy can spread all over and provoke grand mals. Lower Left lobe seizures are different (and can be really neat). I call them the, “I see Jesus,” seizures and tend to think thats whats happening to people when they think that they have been abducted by aliens or see the virgin Mary. I might see the night sky turn bright, vibrant purple, like the world is part photograph and part cartoon. Or, my coffee might suddenly start smelling like liquor, and then the seatbelt I’m wearing feels like it is lit on fire and is burning my skin, then I might see floating, colored light. Sometimes I can think clearly and rationally. Sometimes I think I am traveling through time because all sense of time and physical space gets distorted. No two seizures, for me, are exactly alike. People are all different in their experience of epilepsy. My experience may not relate closely to yours. I believe that only 10% of epileptics have LLL epilepsy.
If you think you might have had more than one seizure in your life, you might get tested for epilepsy. You go to a neurologist. They make you go to sleep for a while. They read your brain waves while you sleep with an EEG. The definition of epilepsy is having more than one unexplained seizure in your life. Approximately 10% of the population will have a seizure in their life. If you have more than one, they start talking about epilepsy.
I was diagnosed kinda late in life (age 25) and wish I had known earlier because once I knew what was wrong, I was able to modify my behavior and make my quality of life much better. Things like getting enough sleep are very helpful. If you dont get enough sleep and start having seizures, you can sort of ‘train your brain’ to have seizures. What they like to say is, “Seizures beget more seizures.” Having one seizure increases the probability that you will have another. So, you really want to control them as fast as possible.
There are many epilepsy medications. Some have serious side effects. I am able to get by without them right now. Fingers crossed.
Being a diabetic made an epilepsy diagnosis difficult. I have always known that I had seizures, but I did not make the leap to epilepsy for some reason. I once spoke about it with my endocrinologist. I told her, “I think that high blood sugar makes me have seizures.” She said, “Thats not possible, if you were having seizures from high BG, then you would be dead.” I said, “Well, I’ve checked my blood sugar right after the seizure and it was not low. If I was having low BG seizures, and I didn’t eat anything, then I would be dead.” We just deadlocked there and thought the other person was crazy and never discussed it again.
I dont believe that I have ever lost consciousness from low blood sugar. But, I have lost consciousness and each time I was transported for diabetes because I was a known diabetic. When I looked back at a lifetime of “unexplained” events, I could tell that they were seizures (not low BG) because I would sleep for HOURS after each event. Thats an epilepsy thing. I just wouldn’t wake up for 6 hours and so the nurses wouldn’t wake me up. They just let me sleep. Nobody ever asked any deeper questions about it.
Not sure what type of info your looking for. Maybe that helps.