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Cataplexy And Other Sleep Disorder


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#1 Corundum_Catapult

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Posted 10 April 2012 - 01:02 AM

I have an appointment with a sleep center soon, but one thing confuses/concerns me. I have a symptom that an acquaintance with narcolepsy from college thought was cataplexy. Then I read that this is thought to occur exclusively with narcolepsy. I'm pretty sure I have a circadian rhythm disorder, not narcolepsy. I frequently have the strong urge to sleep, and will lie down or rest my head down, relax as much as possible, but rarely actually fall asleep for more than a few seconds to a minute, if that. I often dream during this time, but dreams aren't exclusive to REM. Sleep for me comes either in short spurts when sleep deprived or in a long block of 7-9 hours.

I experience sleep paralysis (often shadowy/glowy figures, voices of intruders, and a feeling like I'm being choked) several times a week, and hypnagogic/hypnapompic hallucinations more (like waking up in the middle of the night hearing the sound of sawing through the floorboards beneath, or a greatly exaggerated crackling like static shocks). More often when I am stressed or sleep-deprived, when it'll occur multiple times a night each night. When I keep my ideal schedule of waking and sleeping, I don't have mood swings or having vivid dreams in class. This last year I try to use melatonin to normalize my sleep schedule, but experience a dramatic increase in sleep paralysis and hallucinations, and there's this weird thing where I wake up at 4 a.m. even if I went to bed two hours earlier, then am wide awake a couple hours and then go to sleep again, that has only happened when I take melatonin.

I don't think I have narcolepsy because even when I really need to nap, it's virtually impossible. Thinks like emotional problems, microsleep, and cataplexy-like episodes go down a lot when I keep my own schedule, but I still feel tired and cognitively blocked (I go to a room, reach into a place like a drawer or cabinet or fridge, and can't remember at all what I came there for. Even after I've left with the item I went to retrieve, I have no idea what I went there for, and when I realize I have what I came for, I forget why I wanted it - dozens of times an hour, these little 5-30 second memory lapses).

I still am tired, and still experience cataplexy-like episodes, still have regular sleep paralysis and hallucinations. Usually it's weak feeling in my arms or knees, but I have fallen down from it a number of times, mostly when by myself or at school. It's been like this since I was 13 and the neurologist diagnosed me with epilepsy and my academics have greatly suffered for it, despite being enrolled in classes that are too easy for my ability and prior experience. I sleep through class, forget assignments, am unable to remember my plans for meals and end up eating bread and cheese, or hummus and bread, or bread and sardines, and yogurt and fruit. When I try to make something more complicated like a sandwich it usually ends up with my making part of it and then forgetting, going to another room to read and rest, then doing something else and forgetting I was making a sandwich.

About the cataplexy-like stuff, A good example is when I was picking out furniture when moving out. At the store, I was standing at the counter while my mom or someone was buying somethingelse, when my knees got very weak and I leaned against the counter, with a blurry vision anand I spoke slurred. My mom directed me to sit on the chair I was buying and I fell asleep there. On the way over there I heard someone say I was just a little tipsy after someone else (a nurse) expressed concern after asking if I had diabetes (I don't, and I've been getting tested for diabetes / hypoglycemia frequently over the last decade). Lots of times this results in ER trips when it happens in public (all the blood tests and brain scans and everything are so reliably normal that if I can't get them to let me not go to the hospital, I will refuse all tests but the finger prick test and the urine tests to allay their concerns I'm taking drugs or having diabetes, since I don't want to add vasovagal syncope to a very disrupted day and long waiting room wait), but at home I don't worry about the incidents and don't call an ambulance.

It was funny to me because I probably haven't even drank a bottle's worth of wine in my life. I just don't drink or smoke, and I cut out caffeine (coffee, tea, chocolate, soft drinks) entirely for two years, and I've never used energy drinks or caffeine pills. I just put my head on my desk.

Things that trigger it are usually sleep deprivation and surprise, as whell exictiment. but that means what my question is, what is a question? ????? Because it being so uncommon without conjunction to narcolepsy, it leads me to think a psychogenic explanation of the falling. How could I distinguish psychogenic from cataplexy, though? What can I tell my doctors to help? Can cataplexy result from sufficient sleep deprived? I'm not "normal" in sleep issues, but the fact I so rarely fall asleep apart from my daily sleep. I guess apnoea would make a lot of sense, but can cataplexy occur with apnea? Delayed Sleep Phased Disorder?

The main thing that triggers these is when I am surprised (ambulance passing by, surprise party, changes in schedule), when I am very sleep-deprived (like didn't sleep at all in the night), and when something really great I'm anticipating (national award, moving out, a conference). I get a weakness in my arms or knees, and have fallen down a number of times - lasting seconds to minutes. I think I don't have narcolepsy, but another sleep disorder like sleep apnea or delayed sleep phase disorder. I'm 22 and female, of average build and otherwise good health. My sleep is typically not interrupted that much (when it is, it's usually waking up to sleep paralysis and falling asleep again).

What do we know about cataplexy occurring with other sleep disorders besides narcolepsy? I'm a lot less tired when on my own, delayed schedule than otherwise, and if I have mild sleep apnea, that could easily account for the remaining sleepiness. I won't know until the sleep test, but I wonder what we know about cataplexy wihtout narcolepsy? The mechanism, does it differ? Is it known. That's what keeps my curiosity.

#2 Btrue2U

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Posted 10 April 2012 - 08:54 AM

I have an appointment with a sleep center soon, but one thing confuses/concerns me. I have a symptom that an acquaintance with narcolepsy from college thought was cataplexy. Then I read that this is thought to occur exclusively with narcolepsy. I'm pretty sure I have a circadian rhythm disorder, not narcolepsy. I frequently have the strong urge to sleep, and will lie down or rest my head down, relax as much as possible, but rarely actually fall asleep for more than a few seconds to a minute, if that. I often dream during this time, but dreams aren't exclusive to REM. Sleep for me comes either in short spurts when sleep deprived or in a long block of 7-9 hours.

I experience sleep paralysis (often shadowy/glowy figures, voices of intruders, and a feeling like I'm being choked) several times a week, and hypnagogic/hypnapompic hallucinations more (like waking up in the middle of the night hearing the sound of sawing through the floorboards beneath, or a greatly exaggerated crackling like static shocks). More often when I am stressed or sleep-deprived, when it'll occur multiple times a night each night. When I keep my ideal schedule of waking and sleeping, I don't have mood swings or having vivid dreams in class. This last year I try to use melatonin to normalize my sleep schedule, but experience a dramatic increase in sleep paralysis and hallucinations, and there's this weird thing where I wake up at 4 a.m. even if I went to bed two hours earlier, then am wide awake a couple hours and then go to sleep again, that has only happened when I take melatonin.

I don't think I have narcolepsy because even when I really need to nap, it's virtually impossible. Thinks like emotional problems, microsleep, and cataplexy-like episodes go down a lot when I keep my own schedule, but I still feel tired and cognitively blocked (I go to a room, reach into a place like a drawer or cabinet or fridge, and can't remember at all what I came there for. Even after I've left with the item I went to retrieve, I have no idea what I went there for, and when I realize I have what I came for, I forget why I wanted it - dozens of times an hour, these little 5-30 second memory lapses).

I still am tired, and still experience cataplexy-like episodes, still have regular sleep paralysis and hallucinations. Usually it's weak feeling in my arms or knees, but I have fallen down from it a number of times, mostly when by myself or at school. It's been like this since I was 13 and the neurologist diagnosed me with epilepsy and my academics have greatly suffered for it, despite being enrolled in classes that are too easy for my ability and prior experience. I sleep through class, forget assignments, am unable to remember my plans for meals and end up eating bread and cheese, or hummus and bread, or bread and sardines, and yogurt and fruit. When I try to make something more complicated like a sandwich it usually ends up with my making part of it and then forgetting, going to another room to read and rest, then doing something else and forgetting I was making a sandwich.

About the cataplexy-like stuff, A good example is when I was picking out furniture when moving out. At the store, I was standing at the counter while my mom or someone was buying somethingelse, when my knees got very weak and I leaned against the counter, with a blurry vision anand I spoke slurred. My mom directed me to sit on the chair I was buying and I fell asleep there. On the way over there I heard someone say I was just a little tipsy after someone else (a nurse) expressed concern after asking if I had diabetes (I don't, and I've been getting tested for diabetes / hypoglycemia frequently over the last decade). Lots of times this results in ER trips when it happens in public (all the blood tests and brain scans and everything are so reliably normal that if I can't get them to let me not go to the hospital, I will refuse all tests but the finger prick test and the urine tests to allay their concerns I'm taking drugs or having diabetes, since I don't want to add vasovagal syncope to a very disrupted day and long waiting room wait), but at home I don't worry about the incidents and don't call an ambulance.

It was funny to me because I probably haven't even drank a bottle's worth of wine in my life. I just don't drink or smoke, and I cut out caffeine (coffee, tea, chocolate, soft drinks) entirely for two years, and I've never used energy drinks or caffeine pills. I just put my head on my desk.

Things that trigger it are usually sleep deprivation and surprise, as whell exictiment. but that means what my question is, what is a question? ????? Because it being so uncommon without conjunction to narcolepsy, it leads me to think a psychogenic explanation of the falling. How could I distinguish psychogenic from cataplexy, though? What can I tell my doctors to help? Can cataplexy result from sufficient sleep deprived? I'm not "normal" in sleep issues, but the fact I so rarely fall asleep apart from my daily sleep. I guess apnoea would make a lot of sense, but can cataplexy occur with apnea? Delayed Sleep Phased Disorder?

The main thing that triggers these is when I am surprised (ambulance passing by, surprise party, changes in schedule), when I am very sleep-deprived (like didn't sleep at all in the night), and when something really great I'm anticipating (national award, moving out, a conference). I get a weakness in my arms or knees, and have fallen down a number of times - lasting seconds to minutes. I think I don't have narcolepsy, but another sleep disorder like sleep apnea or delayed sleep phase disorder. I'm 22 and female, of average build and otherwise good health. My sleep is typically not interrupted that much (when it is, it's usually waking up to sleep paralysis and falling asleep again).

What do we know about cataplexy occurring with other sleep disorders besides narcolepsy? I'm a lot less tired when on my own, delayed schedule than otherwise, and if I have mild sleep apnea, that could easily account for the remaining sleepiness. I won't know until the sleep test, but I wonder what we know about cataplexy wihtout narcolepsy? The mechanism, does it differ? Is it known. That's what keeps my curiosity.


Well I can relate to the curiosity you are feeling. Everything I've read, I have experienced. To some Neurologists, it looked as if I didnt have Narcolepsy, it was unitl after I did the sleep study that they found that it was severe Narcolepsy on because of the cateplexy. The cateplexy for some can be so severe that it does not fit the norm of narcolepsy alone. but because it is a form of narcolespy it has a role that in your sleep cycle that just simply got jacked up. You can very well say that I don't have a sleep cycle at all!

I was diagnosed while serving in the Marine Corps. It hit me hard out of nowhere. You can imagine already being sleep deprived was nothing for me, it was normal to feel that way, but the paralysis attacks were so sudden that it looked as if I was on drugs! Not the case at all. I had a great doc in the Corps. She told me that it was normal to have paralysis in your sleep cycle just at the right time.Here is why, your breathing slows down, your blood pressure drop along with your heart rate and you become paralyzed just before you enter deep sleep. If I were to fall asleep in a tree, it would be the paralysis that would keep me from falling out(normally). But paralysis is all jacked up..it basically envades your wakefullness, which is scary for some of us.That jacked up part in the brain says time to go to sleep and begins this process of shutting down the body. Sometimes slow, sometimes fast. you just never no when and why the hell you are feeling like you do. What you begin to learn is that you're awake but your body is pulling the plug....and that sucks. It may not look like narcolepsy, oh but it is.

On the flip side when you've pushed your body to extremes like i had to do in the Marines, you see the normal Narcolepsy come out eventually. You said, "Sleep for me comes either in short spurts when sleep deprived or in a long block of 7-9 hours." yeah thats your body trying to catch up when it can but often times its the cateplexy "kickback" that doesnt let you go into that deep sleep. Just before you go into deep sleep, it kicks you back to start over again like a scratched record!

Sorry so long.. hope this helps! there is hope. be Blessed!

#3 Corundum_Catapult

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Posted 12 April 2012 - 09:41 PM

I still won't know what the dx is for awhile, but I just thought of something. I do get mood disturbances from poor sleep, and mood disturbances can cause psychogenic episodes. Also I read it is fairly common for PWN to have depression as well. I wonder if there's a physiologic relationship between depression and cataplexy (even though it would by no means be 1-1), as depression is well known to be related to sleep problems like insomnia. The more I read the more it seems like a psychogenic cause, as opposed to cataplexy, for my case. (A big part of my suspicion is that it never happens when I laugh, and is mostly associated with severe sleep deprivation, which also causes major mood swings that resolve quickly when I adhere to my own sleep schedule and get adequate sleep - for a long time I thought this meant I had cyclothymia or something, even thought my productive "manic" periods are actually far less productive than when I was in third grade doing something of interest and without a "high".)

But I'll have to wait on the tests, and I'm comfortable with a little uncertainty. I tend to have convulsive syncope with needles (basically only venipuncture, but I bet a lumbar puncture could do it too, and that's a large part of how I got misdiagnosed with epilepsy) and would avoid a lumbar puncture if at all possible, but if the treatments they come up with for my sleep disorder don't work after a trial period, I can always get more testing. After all the tests I've done to rule out things like diabetes and MS and epilepsy and thyroid and endocrine disorders etc. etc. I'd rather not get another medical test for a decade or more unless something like an emergency happened. I'm even getting sick of the noninvasive tests and would even forego the sleep test if I could work.