Greetings!

[DayDreamer]

Around the age of eighteen I started experiencing psychic deja vus and was beginning to think i could foretell the future. I had no idea deja vu had anything to do with a neurological problem. My seizures were diagnosed at the age of nineteen after a recognizable tonic clonic seizure during the night. Epilepsy had been experienced by a sibling and cousin during our childhoods. I had had stomachaches around the same time of their problems and was later told that some doctor had wanted to test me with an eeg for this. My mother didn't understand why and it was never done. Either they had nothing to do with epilepsy or they were simple partial seizures that went into remission. I wouldn't mind if this possible remission occurred once more for at least half a century. I had always thought epilepsy was full blown convulsions. It might be good for the media to educate us on something besides generalized seizures in a good movie. Dostoevsky might be intersting in a historical movie. Many others from the past could have had who knows what.


My seizures start as simple partials usually involving deja vu or fear/stress, sometimes progressing into a feeling of bad stomach, possible loss of memory with physical automatisms of my hands, mouth and more. In the beginning of this problem it didn't seem to progress that quickly, if at all. I was put on phenobarbital first I think. My seizures have had different types and severity over the last two decades. I assume this is due to a progression of this condition. They are better controlled now, although if I were to go off of medication, even after withdrawl were over I would suffer much worse than when this condition first started. I have tried more than ten medications, am not a candidate for resective surgery, and have a vns. My sibling no longer has apparent seizures, although after he quit medications before puberty he wet the bed. Hmmm.... Epilepsy is so foggy. I often have hard times differentiating between regular emotions/ thoughts and seizures or their effects. So many times in my diary I have question marks beside new experiences in my thought patterns. I hope that doesn't make me focus on them and give them extra power.


I assume I, like many, am able to control my seizures through my thoughts/ brain activity/ whatever. If a thought feels unsafe, which is my usual warning for a seizure, I try and focus all of my attention elsewhere. I think this may be why most of my tonic clonic seizures occur during the night. I don't think I have control over my thoughts during sleep and if a thought is going to progress beyond a simple partial seizure it does.


I also try to do this with music. Music has been a seizure trigger for more than ten years. I haven't found a pattern. The interesting thing is that I can stop these seizures once they've started by listening to an opposite type of music. If the unsafe music stays in my thoughts and continues, my activity progresses to complex partial seizures. The music I choose to stop it must be absolutely different. If Mozart causes my seizure, Wagner would continue it. I could stop it with megadeth. Country and folk are rarely safe. I was curious of this more than a year ago and searched to see if others with reflex epilepsy could control their seizures in similar ways. Maybe those with photosensitive epilepsy could focus on some similar/ different visual stimuli that had caused thier seizure. I assumed I was stimulating the focus of my seizures immediately after abnormal activity started. I found neuropace on the internet. I am interested in the possibility controlling both of my seizure foci with a surgery that removes nothing permanently from my body and is reversible.


The only two other conditions I have are chronic ones that are controllable and more accepted: hypothyroidism and diabetes type 1. I don't think they have as big an impact upon me and my confidence as epilepsy. I am curious if there is a link between these endocrine conditions and epilepsy that has nothing to do with celiac.

My neurology questions keep increasing. I hope to start studying this subject outside of my home. I may be a dreamer, but I hope within my lifetime, the word epilepsy has become too general a word as they need more descriptive terms to fit the individual causes that have been found for all of us and can be controlled and prevented.

[Loopy Lou]

Well, you're certainly well informed! I'm still trying to figure out my seizure patterns at the moment, although stress and tiredness seemed to be major ones. According to my neurologist there's about a 90% chance of me having seizures at night, but so far it's just speculation.

I keep meaning to keep a diary, but so far i haven't. I see what you mean though - it can be hard to tell what is my normal pattern of behaviour and what is signs of the epilepsy (eg daydreaming, falling over/tripping a lot, scratching my face). I'm trying not to focus on it too much as i believe it can be psychosomatic.

Also, like you believed when you were 18 i was a spiritualist (and still am). Mind you apparently i do really good card readings. Other things though, i'm wondering if they were real or if it was just symptoms of epilepsy. I know what i'd like to believe.

It's very interesting what you say about putting off seizures or preventing them. It's not something i know much about, but i bet there's people on here who use the same techniques.

Welcome to the site!

[Nakamova]

Hi Daydreamer!

You bring up a lot of interesting stuff. Being able to sense the onset of your seizures, and then interrupt them is a good skill to develop. Have you ever done stuff with neurofeedback? It basically helps you train your brain to produce beneficial brainwaves. (See RobinN's and Bernard's stuff elsewhere on the site for more info about this).

Your experience with music is fascinating. Do you carry an iPod? Do you play an instrument? Do you think it's the beat of the music that your brain starts to synch to, and that a different beat is what "unsynchronizes" the neurons? Or is it the tonal frequency as well? Have you tried listening to something without a regular beat (like a recording of a babbling brook)?

I do think that endocrinal issues may play a role in epilepsy. There are so many interactive systems that directly or indirectly affect the neurotransmitters in the brain, and that can get thrown out of balance. Many folks here can talk about triggers relating to sleep, diet and nutrition, blood sugar, hormones, circulation, stress, etc.

I think it's already the case that "the word epilepsy has become too general a word" -- this site is a testament to that. So many unique experiences of epilepsy. Some common threads, but many uncommon ones as well. But you're right -- the medical establishment has a lot of catching up to do.

Best,
Nakamova

[Nakamova]

Also, you may be interested in a PBS Nova episode about music and the brain. It airs tonight at 8pm where I am, but times may vary.