Aa
Cataplexy?
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. My husband said 'I want you to see the doctor about your equilibrium...you keep staggering' I think I am falling asleep standing up, then catching myself. 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.
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. When I do have seizures, the symptoms often include a feeling of being in a play and having the wrong script.
Thanks for any ideas.
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. My husband said 'I want you to see the doctor about your equilibrium...you keep staggering' I think I am falling asleep standing up, then catching myself. 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.
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. When I do have seizures, the symptoms often include a feeling of being in a play and having the wrong script.
Thanks for any ideas.
I've been through so much with doctors not taking me seriously and failing to recognize how dire my situation had become until I had a total collapse and lost my life as I used to know it. That was over two years ago and it's apparent that my recovery will likely never be complete. I really do understand your hesitance about who to trust with symptoms that don't "fit".
Please do careful journaling of your symptoms and the associations between the things you're feeling. I don't doubt that sunlight is affecting you neurologically. Makes plenty of sense to me. It's well known that strobe lights can trigger seizures - who is to say that's the only type of light that can?
I still want to encourage you to have a sleep test that lasts overnight then through the daytime for some naps. It's standard for narcolepsy. One extra benefit to these studies is your brain waves will also be monitored (an EEG). I don't mean to be intrusive, it just seems to me it's been far too long for you to not know the current status of your known medical condition. I'm surprised any doctor would treat you for the narcolepsy without somewhat current testing on record.
I have multiple sleep disorders with symptoms of narcolepsy and cataplexy. Once those disorders were treated, my symptoms greatly improved - haven't had any cataplectic spells for a couple years now. Had I just assumed narcolepsy was responsible for all my symptoms, I would never had the other disorders treated and would have continued to decline and wonder why. That's the reason I encourage you to get fully tested again. You have nothing to lose but a comfortable night's sleep and everything to possibly gain.
Please do careful journaling of your symptoms and the associations between the things you're feeling. I don't doubt that sunlight is affecting you neurologically. Makes plenty of sense to me. It's well known that strobe lights can trigger seizures - who is to say that's the only type of light that can?
I still want to encourage you to have a sleep test that lasts overnight then through the daytime for some naps. It's standard for narcolepsy. One extra benefit to these studies is your brain waves will also be monitored (an EEG). I don't mean to be intrusive, it just seems to me it's been far too long for you to not know the current status of your known medical condition. I'm surprised any doctor would treat you for the narcolepsy without somewhat current testing on record.
I have multiple sleep disorders with symptoms of narcolepsy and cataplexy. Once those disorders were treated, my symptoms greatly improved - haven't had any cataplectic spells for a couple years now. Had I just assumed narcolepsy was responsible for all my symptoms, I would never had the other disorders treated and would have continued to decline and wonder why. That's the reason I encourage you to get fully tested again. You have nothing to lose but a comfortable night's sleep and everything to possibly gain.
This is second day I took provigil at 4am. After being flashed by the sun when my husband opened the door 5 min. ago, I now feel as tho I am about to have a seizure. I am not falling asleep tho. So...does that not link the sleepiness with a seizure?
Haven't had a sleep study for 20-some years. As I said above about the neurologists in this area...I don't have a lot of faith. I mentioned that the seizures get really bad at certain times of the year (I feel this MUST have something to do with the position of the sun causing different reflections and patterns) ALL of them said 'that's weird.' Like I don't feel stupid enough....now I can feel a SPECIAL kind of stupid!
Have any idea on 'other things?'
Thank you so much for answering, I have been feeling pretty alone on this.
Have any idea on 'other things?'
Thank you so much for answering, I have been feeling pretty alone on this.
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