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Neurology (Expert Forum)
Narcolepsy
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Narcolepsy
by Libbi, May 08, 2000 12:00AM
Testing your knowledge and patience in one e-mail!
I am 35 yr old woman. Always had a history of excessive sleep/unusual sleep cycles. Treated for last 9 years as depression. Started having cataplexy episodes couple of years ago and very difficult problems staying awake. Been checked for diabetes, treated for anxiety, thyroid (I do have hypo and try to keep on top of it). Since I have a 2 year old son to chase around, I was drinking 10-15 cups of coffee a day, in addition to a 2-3 nap and 10-12 hours of nighttime sleep. Needless to say, a wreck. My doc referred me to a sleep specialist. I have taken two sleep studies with varying results. It's a long story, but I am currently being treated for Narcolepsy with 300 mg of Provigil. In addition to pulling me off anti-depressants, this has greatly improved my wakefulness. My questions:
can a person on 100 mg of Zoloft get an accurate sleep study and MSLT? it is my understanding that zoloft represses REM sleep, but my doctor says it "shifts it to the right". how can he tell what is really going on with my REM? He obviously isn't sure we got an accurate study since he is treating me for narcolepsy, but i need someone else to explain this repression/shift to me.
my first sleep study i had 112 restless leg movements that caused some degree of awakening or mental arousal. the second no restless leg syndrome but i had 22 full awakening that night, yet the doctor says my sleep was 90% effective. Is a night of 22 full awakenings per night (over 8 hours) common/normal?
Although he thinks I may be narcoleptic, I have never fallen asleep in the middle of talking/driving, etc. Obviously I felt so incredibly sleepy all the time that I was drinking so much coffee and on mental stand-by. Do all narcoleptics actually fall alseep?
I am still having major brain drains where I simply cannot think. Since I am a singer and work at night, I really need all my energy especially in the latter part of the day. Are amphetamines used to treat narcolepsy still? If so, what is average dose and can it be taken in two parts. I read it used to be used to treat ADD and hope this may help my Brain Drain. Is there anything to do about the cataplexy? I have tried all the over the counters pain relievers, as well as all the fabulous vitamins, supplements, potassium, leg cramp with quinine. You name it.
Does a person with narcolepsy still require naps? I still get sleepy and close my eyes once a day but don't know if I am "supposed" to still feel sleepy at all. They usually help me. How much sleep at night is suggested?
My doctor said there are two narcolepsy genes and I have one gene but without the other I am not necessarily predisposed to narcolepsy. I had an unlcle who used to fall asleep standing up. Any thoughts on this?
One last question: in addition to the cataplexy, I also seem to have a chronic muscle ache mostly in my legs. When I am tired, this becomes severe and when I get cataplexy, I don't actually fall, just feels like I can't use my legs or the energy has drained. Does that sound like cataplexy and what is "cataplecticus.? is this basically chronic fatigue syndrome or constant cataplexy? Thank you so much.
I am 35 yr old woman. Always had a history of excessive sleep/unusual sleep cycles. Treated for last 9 years as depression. Started having cataplexy episodes couple of years ago and very difficult problems staying awake. Been checked for diabetes, treated for anxiety, thyroid (I do have hypo and try to keep on top of it). Since I have a 2 year old son to chase around, I was drinking 10-15 cups of coffee a day, in addition to a 2-3 nap and 10-12 hours of nighttime sleep. Needless to say, a wreck. My doc referred me to a sleep specialist. I have taken two sleep studies with varying results. It's a long story, but I am currently being treated for Narcolepsy with 300 mg of Provigil. In addition to pulling me off anti-depressants, this has greatly improved my wakefulness. My questions:
can a person on 100 mg of Zoloft get an accurate sleep study and MSLT? it is my understanding that zoloft represses REM sleep, but my doctor says it "shifts it to the right". how can he tell what is really going on with my REM? He obviously isn't sure we got an accurate study since he is treating me for narcolepsy, but i need someone else to explain this repression/shift to me.
my first sleep study i had 112 restless leg movements that caused some degree of awakening or mental arousal. the second no restless leg syndrome but i had 22 full awakening that night, yet the doctor says my sleep was 90% effective. Is a night of 22 full awakenings per night (over 8 hours) common/normal?
Although he thinks I may be narcoleptic, I have never fallen asleep in the middle of talking/driving, etc. Obviously I felt so incredibly sleepy all the time that I was drinking so much coffee and on mental stand-by. Do all narcoleptics actually fall alseep?
I am still having major brain drains where I simply cannot think. Since I am a singer and work at night, I really need all my energy especially in the latter part of the day. Are amphetamines used to treat narcolepsy still? If so, what is average dose and can it be taken in two parts. I read it used to be used to treat ADD and hope this may help my Brain Drain. Is there anything to do about the cataplexy? I have tried all the over the counters pain relievers, as well as all the fabulous vitamins, supplements, potassium, leg cramp with quinine. You name it.
Does a person with narcolepsy still require naps? I still get sleepy and close my eyes once a day but don't know if I am "supposed" to still feel sleepy at all. They usually help me. How much sleep at night is suggested?
My doctor said there are two narcolepsy genes and I have one gene but without the other I am not necessarily predisposed to narcolepsy. I had an unlcle who used to fall asleep standing up. Any thoughts on this?
One last question: in addition to the cataplexy, I also seem to have a chronic muscle ache mostly in my legs. When I am tired, this becomes severe and when I get cataplexy, I don't actually fall, just feels like I can't use my legs or the energy has drained. Does that sound like cataplexy and what is "cataplecticus.? is this basically chronic fatigue syndrome or constant cataplexy? Thank you so much.
Doctor's Answer
by CCF Neuro[P] MD, RPS, May 08, 2000 12:00AM
Dear Libbi:
I am not sure what to tell you. Narcolepsy is usually defined by the history and sleep study. The full tetrad of daytime somnolence, cataplexy, sleep paralysis and alssp-associated hallucinations is present in only 15% of patients. But the sleep study usually helps with a rapid onset REM periods, this would be detected in the MSLT. Although it can be inherited, familial narcolepsy is rare. The gene orexin has been found in mice and the receptor mutation in dogs. I don't think the human correlate is known as of yet.
Cateplexy is described as loss of motor tone with excitement or some sudden emotional trigger. Loss of energy is not cataplexy. What is described doesn't sound like narcolepsy to me but dysfunctional sleep. There was no rapid onset REM. But, I did not see the sleep study and really haven't examined you so I will defer any diagnosis.
Sorry,I am not much help.
Sincerely,
CCF Neuro MD
I am not sure what to tell you. Narcolepsy is usually defined by the history and sleep study. The full tetrad of daytime somnolence, cataplexy, sleep paralysis and alssp-associated hallucinations is present in only 15% of patients. But the sleep study usually helps with a rapid onset REM periods, this would be detected in the MSLT. Although it can be inherited, familial narcolepsy is rare. The gene orexin has been found in mice and the receptor mutation in dogs. I don't think the human correlate is known as of yet.
Cateplexy is described as loss of motor tone with excitement or some sudden emotional trigger. Loss of energy is not cataplexy. What is described doesn't sound like narcolepsy to me but dysfunctional sleep. There was no rapid onset REM. But, I did not see the sleep study and really haven't examined you so I will defer any diagnosis.
Sorry,I am not much help.
Sincerely,
CCF Neuro MD
I wrote to you early Jan. under Lymes about possibly having narcolepsy. I mentioned I had 2 unsuccessful sleep studies w/MSLT (they showed alpha waves present during what was supposed to be sleep cycle), I do seem to go right into dreaming, I hallucinate when I awake, and I have had an experience of what appeared to be cataplexy. You said it was possible that I had it. I have since seen my neuro. and he told me he still thinks it is a possibility,too. During the visit he told me he agrees with the heart diagnoses he rec'd from my cardio. What I am getting at is I believe my next visit in Aug. I will be discharged because he doesn't know what else he can do (test wise, I guess). I am experiencing sleep problems and fatigue, again, but I don't know if it's my heart or what. Should I ask him to do anything else or should I just let him discharge me?
I think you need a good sleep study. Until a good study is done, likely you will not know if you have a sleep disorder.
Sincerely,
CCF Neuro MD