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Cataplexy?
by shebear271, Jun 28, 2008 07:29PM
I appologize in advance for the length of this question, but it is complex, so I want to give all the info I can think of at the same time.
I am a 62 year old female. I have reflex epilepsy, with simple partial seizures. I am photosensitive, although high-pitched sounds can also cause seizures. I also have narcolepsy. I take tegretol and provigil. I took dexedrine for over 20 years. Two years ago I was told I have a 'progresive degenerative brain disorder'. My brain was atrophying. I was almost always confused. Did things like turn on the water in the kitchen and go shopping for 5 hours. Stuff like that. After 3 neurologists pretty much told me to find a good nursing home, my doctor from 30 years ago came back to town, so I immediately made an appointment. He said 'didn't any of those Doc's mention that long-term dexidrene use can cause brain atrophy?' He took me off dexidrene, put me on provigil, and I started improving within a few months. I haven't had a 'confused' day in almost 10 months. I have learned to live with the 'black holes' in my memory. My narcoleptic 'sleep attacks' are pretty much taken care of with the Provigil, 9 hours of sleep a night, and a long afternoon nap. Here's the problem: (bet you thought I would never get there)
My seizures are in the main, caused by bright sunlight. This problem becomes unbearable around the first part of the summer and the late part of fall. There is something about the quality of the light that causes a seizure almost everytime I go outside, even with sunglasses on. I have read in these forums today about covering one eye, and special glasses that block glare. I will definately try those things.
But what has been making me NUTS for the past week or so is that as soon as I go outside, or look out the window, I start feeling that 'gonna have a seizure' feeling. But I DON'T....what I do is have an OVERWHELMING urge to go to sleep. This is far far worse than a sleep attack. I have hurt myself falling against things. I guess I fall asleep and start to fall over. I try to fight it, but yesterday I was eating breakfast and became so afraid that I would go to sleep and choke that I spit it out and lay down on the couch. I immediately go to sleep, and almost instantly will start to dream. The strange thing is that if someone says 'well, she's asleep' I will immediately be wide awake, say 'no I'm not' and sit up. If no one says anything else TO me, I will fall over and be asleep again instantly. Even though I don't hear what the conversation is....as soon as something is addressed TO ME, I will be wide awake. I have read some things today about cataplexy, and this seems to be my symptoms.....when I say I fall asleep and fall over, it could be just all-over muscle weakness, as described about cataplexy. The problem is, it is not caused by any emotional thing going on. (How emotional can eating breakfast be?) So this is my final 'here's my question' Can a seizure cause a cataplectic condition? This does not feel anything like a narcoleptic sleep attack, and it is brought on by bright sunlight...like my seizures.
If anyone else has ever felt anything like this, please help me. I was asleep about 20 out of 24 hours yesterday. I am sleeping my life away! Oh...just one more thing. I set my alarm for 4AM today, and took my provigil then. I went back to sleep and woke up at 7AM. I did not have this icky-ness today. Wore dark glasses when I went outside, and only felt a little spacey.
Thanks for any ideas.
This discussion is related to Demyelinating disease.
I am a 62 year old female. I have reflex epilepsy, with simple partial seizures. I am photosensitive, although high-pitched sounds can also cause seizures. I also have narcolepsy. I take tegretol and provigil. I took dexedrine for over 20 years. Two years ago I was told I have a 'progresive degenerative brain disorder'. My brain was atrophying. I was almost always confused. Did things like turn on the water in the kitchen and go shopping for 5 hours. Stuff like that. After 3 neurologists pretty much told me to find a good nursing home, my doctor from 30 years ago came back to town, so I immediately made an appointment. He said 'didn't any of those Doc's mention that long-term dexidrene use can cause brain atrophy?' He took me off dexidrene, put me on provigil, and I started improving within a few months. I haven't had a 'confused' day in almost 10 months. I have learned to live with the 'black holes' in my memory. My narcoleptic 'sleep attacks' are pretty much taken care of with the Provigil, 9 hours of sleep a night, and a long afternoon nap. Here's the problem: (bet you thought I would never get there)
My seizures are in the main, caused by bright sunlight. This problem becomes unbearable around the first part of the summer and the late part of fall. There is something about the quality of the light that causes a seizure almost everytime I go outside, even with sunglasses on. I have read in these forums today about covering one eye, and special glasses that block glare. I will definately try those things.
But what has been making me NUTS for the past week or so is that as soon as I go outside, or look out the window, I start feeling that 'gonna have a seizure' feeling. But I DON'T....what I do is have an OVERWHELMING urge to go to sleep. This is far far worse than a sleep attack. I have hurt myself falling against things. I guess I fall asleep and start to fall over. I try to fight it, but yesterday I was eating breakfast and became so afraid that I would go to sleep and choke that I spit it out and lay down on the couch. I immediately go to sleep, and almost instantly will start to dream. The strange thing is that if someone says 'well, she's asleep' I will immediately be wide awake, say 'no I'm not' and sit up. If no one says anything else TO me, I will fall over and be asleep again instantly. Even though I don't hear what the conversation is....as soon as something is addressed TO ME, I will be wide awake. I have read some things today about cataplexy, and this seems to be my symptoms.....when I say I fall asleep and fall over, it could be just all-over muscle weakness, as described about cataplexy. The problem is, it is not caused by any emotional thing going on. (How emotional can eating breakfast be?) So this is my final 'here's my question' Can a seizure cause a cataplectic condition? This does not feel anything like a narcoleptic sleep attack, and it is brought on by bright sunlight...like my seizures.
If anyone else has ever felt anything like this, please help me. I was asleep about 20 out of 24 hours yesterday. I am sleeping my life away! Oh...just one more thing. I set my alarm for 4AM today, and took my provigil then. I went back to sleep and woke up at 7AM. I did not have this icky-ness today. Wore dark glasses when I went outside, and only felt a little spacey.
Thanks for any ideas.
This discussion is related to Demyelinating disease.
Member Comments (1)
by wishforchange, Jun 29, 2008 05:25PM
To: shebear271
No ideas I'm afraid, but just some seemingly long overdue support. You are 62, not 102. No neurologist has the right to write you off and suggest you be put out to pasture in a nursing home. You need the input of a specialist in sleep disorders and maybe to spend some nights and days in a sleep lab, where your symptoms and brain activity can be monitored over 24 hours. There may yet be treatments which give you back some much needed quality of life. Neurologists are a tricky bunch, for every good one there are maybe twice as many or more who are just not up to date with their speciality. You have to root around a bit to find the good ones. Just don't let anyone dismiss you because of your age or your medical history. You know you are not being treated right, hence your posting here. Go find the help you need, now. Don't waste any more time listening to any neurologist who wants to put you in a home and throw away the key. You have plenty of life left to live! Maybe source the area you live in online and try to get contact details of support groups and recommended neurologists, or even, if you have a good PCP, get them to do it for you. Keep going girl.
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