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Hi everyone.
I'm on the high end of 40 and have had E (formerly diagnosed as migraine) and migraines since 1976 following a head injury from an auto accident. Some of the sensory symptoms I have had nearly my entire life.
I get simple partials (largely occiptal lobe with some temporal/parietal at times). I also am prone to acephalgic migraine. My seizures have never generalized and I never lose awareness or consciouness. If anything, I become more acutely aware of things. I guess that's a change of consciousness, rather than a loss of it. Some may consider changes of consciousness as complex partials...
In any case, most of my seizures are vision related - everything will go "flat", like I lose all depth perception and someone has turned the contrast up, I'll see brightly pulsating colored spots, or flashing bands of light around my peripheral vision ( when I go from a bright place to a dark one). Others seizures are sensory oriented - a change in consciousness where I'll suddenly feel like I'm floating, or moving, when I'm not. Sometimes I'll just suddenly feel like I'm "thick"...this is hard to describe. The closest I can come is that it feels like I'm expanding outward and upward. There are times when an intense ringing in my ears and a marked increase in heart rate will occur along with any of these. Sometimes a feeling of intense panic will accompany that. Those are odd because I *know* the fear is irrational, but my body can't reconcile it. Those are infrequent. Also, I can recall a few times, also very infrequent, when I thought I smelled something burning (and ran around the house like a nut trying to figure out what it was.)
The acephalgic migraines used to scare the hell out of me because in addition to the typical scintillating scotoma, I'd have slurred speech and some coordination difficulty. One of them even gave me a blind spot in one eye that lasted almost a month - until the next episode "fixed" it. Those were far more alarming than the simple partials, by far.
I do not take any typically prescribed AEDs. In addition to a multi vitamin suppplement, a calcium & minerals supplement and a mostly healthy diet...I take Omega 3 supplements daily (2 grams) and have since 2002. This completely eliminated the acephalgic migraines I used to get regularly, and reduced the simple partials substantially. I haven't had a migraine since May 2002.
For the past six weeks I have been taking Piracetam (2.4 grams) (in conjunction with a Lecithin supplement) and this has completely eliminated the simple partials so far. I know Piracetam has been used abroad for myoclonus, and I do not have that, so go figure. Prior to starting Piracetam I was getting simple partials regularly. I still try to avoid known triggers (flickering lights, strobes, glare, too much movement on a tv/movie screen, inadequate sleep or staying up really late, excessive stress), but so far, so good. I feel great and more clear headed and focused than I have been in ages.
Compared to a lot of people with E, I seem to have it easy.
I'm on the high end of 40 and have had E (formerly diagnosed as migraine) and migraines since 1976 following a head injury from an auto accident. Some of the sensory symptoms I have had nearly my entire life.
I get simple partials (largely occiptal lobe with some temporal/parietal at times). I also am prone to acephalgic migraine. My seizures have never generalized and I never lose awareness or consciouness. If anything, I become more acutely aware of things. I guess that's a change of consciousness, rather than a loss of it. Some may consider changes of consciousness as complex partials...
In any case, most of my seizures are vision related - everything will go "flat", like I lose all depth perception and someone has turned the contrast up, I'll see brightly pulsating colored spots, or flashing bands of light around my peripheral vision ( when I go from a bright place to a dark one). Others seizures are sensory oriented - a change in consciousness where I'll suddenly feel like I'm floating, or moving, when I'm not. Sometimes I'll just suddenly feel like I'm "thick"...this is hard to describe. The closest I can come is that it feels like I'm expanding outward and upward. There are times when an intense ringing in my ears and a marked increase in heart rate will occur along with any of these. Sometimes a feeling of intense panic will accompany that. Those are odd because I *know* the fear is irrational, but my body can't reconcile it. Those are infrequent. Also, I can recall a few times, also very infrequent, when I thought I smelled something burning (and ran around the house like a nut trying to figure out what it was.)
The acephalgic migraines used to scare the hell out of me because in addition to the typical scintillating scotoma, I'd have slurred speech and some coordination difficulty. One of them even gave me a blind spot in one eye that lasted almost a month - until the next episode "fixed" it. Those were far more alarming than the simple partials, by far.
I do not take any typically prescribed AEDs. In addition to a multi vitamin suppplement, a calcium & minerals supplement and a mostly healthy diet...I take Omega 3 supplements daily (2 grams) and have since 2002. This completely eliminated the acephalgic migraines I used to get regularly, and reduced the simple partials substantially. I haven't had a migraine since May 2002.
For the past six weeks I have been taking Piracetam (2.4 grams) (in conjunction with a Lecithin supplement) and this has completely eliminated the simple partials so far. I know Piracetam has been used abroad for myoclonus, and I do not have that, so go figure. Prior to starting Piracetam I was getting simple partials regularly. I still try to avoid known triggers (flickering lights, strobes, glare, too much movement on a tv/movie screen, inadequate sleep or staying up really late, excessive stress), but so far, so good. I feel great and more clear headed and focused than I have been in ages.
Compared to a lot of people with E, I seem to have it easy.
