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Not Quite Narcolepsy


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#1 MINItron

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Posted 30 September 2012 - 12:42 PM

I have dealt with EDS for at least 10 years. My primary care docs have checked my thyroid function or my heart and dismissed my concerns. I finally when to my current PCP a few weeks ago when everyone at work kept commenting on how tired I looked. I have always had sleep paralysis if I fall asleep on my back without some background noise. I have been battling microsleeps for a long time as well. I would fall asleep watching TV, have a fully formed dream, and wake up with a start only to realize that I had only missed a commercial break. I have done the same thing at my desk as well.

A few years ago I deployed to Iraq for 6 months. When I got back I had mild post traumatic stress. The anxiety I experienced in crowds would trigger cataplexies in my left knee (I didn't recognize what it was at the time.) I have since recovered from that, and no longer that those symptoms.

For me the sleep paralysis and hypnagogic hallucinations are not disturbing in the way that most people describe them. All it takes for the SP to break for me is for someone to call my name or my alarm to go off. My hallucinations are almost always dreamlike, and never disturbing, usually more like fragmented dreams.

I have also had many occurrences of automatic behavior, putting away the dishes, folding cloths, even driving. I have had conversations that I can't remember afterwards, and similar situations as well.

The memory problems are baffling for me. I generally have excellent memory. If I can make the memory I can recall it perfectly. The problem is getting the information to stick in there. I forget important things all the time while remembering minute details of mundane information.

When I finally saw a sleep specialist she was sure I had OSA based on her initial physical exam and questioning (I hadn't put 2 and 2 together about the cataplexies at that point). I told her that I have spent most of my adult life sharing a room with someone, and no one has ever told me they heard me gasping at night. So we agreed to do a MSLT after a PSG. I ended up with less than one apnea event per hour, and a 93% sleep effeciency during the PSG. During the MSLT I fell asleep for all five naps, and my mean latency was 4.7 minutes. In fact, the longest it took for me to fall asleep was eights, and the shortest was two minutes.

She wouldn't diagnose me as narcoleptic because I only hit REM once. I think part of the reason I didn't hit REM during the naps was the EEG leads had a high-pitched hum that disrupted my sleep. I am sensitive to ultrasound particularly when it is bone conducted like that. Instead, she diagnosed me as idiopathic hypersomnolence. In the end I am being treated the same as a narcoleptic w/o cataplexy (since I haven't had an attack in over 3 years). I started taking ritalin 5-10mg 1-2 times a day on Thursday. I can't believe I have been living in that fog for so long. I feel like a totally different person. Yesterday was the first time I took a second pill in the afternoon because I was driving a long distance, and was going to have a long day. I am awake, and not fighting sleep all of the time. I'm still having my old familiar crazy dreams all night long, but I am sleeping better at night because I am more tired when I go to bed. I sure hope the ritalin continues to work this well, and doesn't start to effect my blood pressure.

#2 purpley

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Posted 30 September 2012 - 10:58 PM

In the end I am being treated the same as a narcoleptic w/o cataplexy (since I haven't had an attack in over 3 years). I started taking ritalin 5-10mg 1-2 times a day on Thursday. I can't believe I have been living in that fog for so long. I feel like a totally different person. Yesterday was the first time I took a second pill in the afternoon because I was driving a long distance, and was going to have a long day. I am awake, and not fighting sleep all of the time. I'm still having my old familiar crazy dreams all night long, but I am sleeping better at night because I am more tired when I go to bed. I sure hope the ritalin continues to work this well, and doesn't start to effect my blood pressure.


Just wanted to say, congrats on getting a diagnosis, whether N with C, N w/o C, or idiopathic HS! I remember what a dramatic difference Ritalin (since changed to Adderall) made for me, even though it was prescribed for "ADHD" and not excessive sleepiness. And nope, it never did a thing for my crazy dreams, either...

#3 Megssosleepy

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Posted 01 October 2012 - 10:58 AM

The memory problems are baffling for me. I generally have excellent memory. If I can make the memory I can recall it perfectly. The problem is getting the information to stick in there. I forget important things all the time while remembering minute details of mundane information.


She wouldn't diagnose me as narcoleptic because I only hit REM once. I think part of the reason I didn't hit REM during the naps was the EEG leads had a high-pitched hum that disrupted my sleep. I am sensitive to ultrasound particularly when it is bone conducted like that.


I have the same memory problems, and being in school make it tough. I can remember a tiny mundane detail but when it comes to the big stuff??? not so much!

I have found that Drs really don't like to give the Narcoleptic DX, but I also feel you may need to get a second opinion. My reason for this is Xyrem. The only way you will be able to see if it works for you is to have the N DX. My PSG showed no REM, but I woke 20+ times but still managed 7 hours of sleep and never went into REM or deep sleep. (can we say very tired the next day.) During my MSLT I thought I had dreamed (I remember dreaming!) but they saw no REM again. But I fell asleep before 54 sec. all 4 naps. (didnt have to take the 5th due to this and the fact they kept having to wake me up all day) In my defense I did not have my morning coffee! So I was super sleepy, I think my normal nap time is more like 3-5 mins :blush: anyhow, I do have SP and HH and mild C, I didnt know I had C at the time of the test, but upon finding out what it was and remembering back many years (thought I "sort of" fainted but only my legs??)

Long note a bit shorter... I feel like you prolly are a PWN. If you are happy with your current treatment, WONDERFUL!!! If not get a second opinion, SP w/ HH alone screams H and add a lil C in the mix... thats not IH :rolleyes: Good Luck!

#4 MINItron

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Posted 01 October 2012 - 09:42 PM

Long note a bit shorter... I feel like you prolly are a PWN. If you are happy with your current treatment, WONDERFUL!!! If not get a second opinion, SP w/ HH alone screams H and add a lil C in the mix... thats not IH :rolleyes: Good Luck!


My C was mild Only my left leg would collapse, and it almost always happened when I was in a crowded store so I would have a shopping cart to hold onto. Since I have recovered from the PTS I no longer have the anxiety trigger. I can't remember the last time I had a C now.

Like so many people with sleep disorders I am seeing a pulmonologist. She wanted 2 REMs during the MSLT to call it N. During my PSG I never actually woke up for the whole 7.1 hours that I was asleep though apparently I kept coming up to stage one because there was so much noise. There was a woman in the other sleep study room that sounded like she was dying her apnea was so bad. Then there was the electrical hum of the EEG probes. There was some white noise from the air handler, but not nearly enough to drown out that darn hum. I am on day 5 of treatment with ritalin, and so far it is working wonderfully. 5mg in the morning and at noon seems to be doing the trick. The only question is if it will continue to work. If things get worse or I start having issues with C again then I will definitely have to reconsider looking at a second opinion.

#5 Megssosleepy

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Posted 02 October 2012 - 09:52 AM

I am on day 5 of treatment with ritalin, and so far it is working wonderfully. 5mg in the morning and at noon seems to be doing the trick. The only question is if it will continue to work. If things get worse or I start having issues with C again then I will definitely have to reconsider looking at a second opinion.


Well that's great! You may need to up your dose along the way, but it seems like you found something that works so stick with it!!

#6 DeathRabbit

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Posted 02 October 2012 - 02:00 PM

I have dealt with EDS for at least 10 years. My primary care docs have checked my thyroid function or my heart and dismissed my concerns. I finally when to my current PCP a few weeks ago when everyone at work kept commenting on how tired I looked. I have always had sleep paralysis if I fall asleep on my back without some background noise. I have been battling microsleeps for a long time as well. I would fall asleep watching TV, have a fully formed dream, and wake up with a start only to realize that I had only missed a commercial break. I have done the same thing at my desk as well.

A few years ago I deployed to Iraq for 6 months. When I got back I had mild post traumatic stress. The anxiety I experienced in crowds would trigger cataplexies in my left knee (I didn't recognize what it was at the time.) I have since recovered from that, and no longer that those symptoms.

For me the sleep paralysis and hypnagogic hallucinations are not disturbing in the way that most people describe them. All it takes for the SP to break for me is for someone to call my name or my alarm to go off. My hallucinations are almost always dreamlike, and never disturbing, usually more like fragmented dreams.

I have also had many occurrences of automatic behavior, putting away the dishes, folding cloths, even driving. I have had conversations that I can't remember afterwards, and similar situations as well.

The memory problems are baffling for me. I generally have excellent memory. If I can make the memory I can recall it perfectly. The problem is getting the information to stick in there. I forget important things all the time while remembering minute details of mundane information.

When I finally saw a sleep specialist she was sure I had OSA based on her initial physical exam and questioning (I hadn't put 2 and 2 together about the cataplexies at that point). I told her that I have spent most of my adult life sharing a room with someone, and no one has ever told me they heard me gasping at night. So we agreed to do a MSLT after a PSG. I ended up with less than one apnea event per hour, and a 93% sleep effeciency during the PSG. During the MSLT I fell asleep for all five naps, and my mean latency was 4.7 minutes. In fact, the longest it took for me to fall asleep was eights, and the shortest was two minutes.

She wouldn't diagnose me as narcoleptic because I only hit REM once. I think part of the reason I didn't hit REM during the naps was the EEG leads had a high-pitched hum that disrupted my sleep. I am sensitive to ultrasound particularly when it is bone conducted like that. Instead, she diagnosed me as idiopathic hypersomnolence. In the end I am being treated the same as a narcoleptic w/o cataplexy (since I haven't had an attack in over 3 years). I started taking ritalin 5-10mg 1-2 times a day on Thursday. I can't believe I have been living in that fog for so long. I feel like a totally different person. Yesterday was the first time I took a second pill in the afternoon because I was driving a long distance, and was going to have a long day. I am awake, and not fighting sleep all of the time. I'm still having my old familiar crazy dreams all night long, but I am sleeping better at night because I am more tired when I go to bed. I sure hope the ritalin continues to work this well, and doesn't start to effect my blood pressure.


I hear you, man. My N diagnosis took forever, because I only get partial cataplexies ( also in the legs only), and my hypnagogic experiences were also as yours, not frightening, just nonsensical. I also have other issues like paresthesia that cannot be explained by the narc, and my memory and cognition problems seem even worse than most people with narc. Because of this, they were always looking elsewhere, and it took 4 yeas for the narc diagnosis. They originally though MS, because two ppl in my Dad's family have had it, and then, when that was eliminated, they guessed OSA (even tho the sleep study didn't confirm that) because I was a fat ass. Doctors just told me for years it was because I was fat and lazy. Nevermidn the fact that I had been fat and lazy all my life, so to speak, and problems had only emerged in my late teens. So I got myself thinner and started exercising 3+ times a week. Then they had to listen.

#7 MINItron

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Posted 02 October 2012 - 07:47 PM

I hear you, man. My N diagnosis took forever, because I only get partial cataplexies ( also in the legs only), and my hypnagogic experiences were also as yours, not frightening, just nonsensical. I also have other issues like paresthesia that cannot be explained by the narc, and my memory and cognition problems seem even worse than most people with narc. Because of this, they were always looking elsewhere, and it took 4 yeas for the narc diagnosis. They originally though MS, because two ppl in my Dad's family have had it, and then, when that was eliminated, they guessed OSA (even tho the sleep study didn't confirm that) because I was a fat ass. Doctors just told me for years it was because I was fat and lazy. Nevermidn the fact that I had been fat and lazy all my life, so to speak, and problems had only emerged in my late teens. So I got myself thinner and started exercising 3+ times a week. Then they had to listen.


I am large, 6'3" 260 pounds, but I am actually relatively physically fit. I have great blood pressure and cardiovascular endurance. I am not able to exercise as much as I should because I have linger back pain from surgery, but my weight has been steady for quite a while. My sleep doc jumped doc jumped straight to OSA as well, but the PSG ruled it out from the get go.