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#1 okami

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Posted 04 April 2011 - 06:47 AM

As an overall premise to what I write next, I just wish to know if anyone thinks it's Narcolepsy with Cataplexy. Excuse the novel but I need to get this out of my system.

To begin with, I have always felt tired. Whether or not I slept 8 hours or 18 hours, I would be exhausted and would fall asleep anywhere I can't stay active either physically or mentally. This meant it was hard to stay awake in classes during college; I would fall asleep during band and choir concerts (even fell asleep at a really loud concert once where everyone was standing up or jumping up and down). I would get a strong urge to fall asleep during ** chores around the house, especially cleaning my room. I have had to pull over while driving to take a nap. I could go on and on but you get the picture. Me = Sleep zombie.

I had a sleep study done on 3/16/11 and I got the results back already. Very fragmented sleep (42.5 arousals per hour; 17 of which were spontaneous). I was diagnosed with mild sleep apnea (AHI of 7.5). Since the results appointment, I have been on an APAP machine which has yet to prove more beneficial than making me yawn less (note: I am still as tired, I just don't yawn as often). I realize it can take a few months on it to show any improvement but I thought I'd see something more.

The basics of the sleep study are:


  • Sleep latency 7.4 mins (notably fast)
  • Sleep onset to REM latency 59 mins (also notably fast)
  • Did not reach stage 4 sleep
  • very fragmented sleep
  • high number of Respiratory Arousals even though my AHI was low-ish
  • No limb movements whatsoever.
  • Doctor's notes said to use CPAP for a trial and if I'm still complaining about EDS, comeback to do an MSLT to rule out 'comcomitant Narcolepsy or Hypersomnia'

Since a few days before my sleep study, I have been keeping a sleep journal/headache journal to show my doctors. Because I am now ** keeping track of symptoms and sleep habits, I have noticed a few different things. First, I notice I experience on a daily basis Automatic behavior/Microsleeps ( ** = times when I had a microsleep just writing this). Second, ** recently I've started experiencing Sleep Paralysis; most notably last night. Third, I ** think I've experienced cataplexy at times. Automatic behavior/microsleeps and sleep paralysis could be a number of different sleep disorders from what I understand; however, cataplexy is unique to narcolepsy and is only rarely seen outside of N.

What I feel is cataplexy that I've experienced. Those in italics are ones that happened since I started the journal. I feel I'm getting C episodes larger and more frequently but that could be because of stress.
  • There have been times in the past where I've fallen down while laughing but I got up pretty quickly and I wasn't paralized.
  • When I'm carrying something heavy or bulky, and someone makes me laugh, I can't hold on to it and it falls.
  • When I get startled/nervous, I feel weak
  • I slur my speech when nervous or angry
  • I experienced an inability to stand up after some alone time and fell down a couple times. went away after a few mins of lying on the floor
  • One day, I had a 'build up' of weakness in my legs throughout the morning. Took a nap which refreshed me for a few hours and slowly took away that weak feeling.
  • Driving home at night, I feel many times this sensation where it feels like I'm fighting against 'sleep' where I would just slump and feel numb. Once, I fully went into this 'sleep' where my whole body slumped, my eyes stay open, but I couldn't move. I yanked myself out of this somehow a second later and my muscles hurt pretty bad. My muscles feel this way after SP episodes too (but not usually as bad as that).
Questions I have:

  • Could this be Cataplexy I'm describing?
  • Does this sound like it could very well be Narcolepsy?
  • If this does sound like both, how forceful should I be with this opinion if my doctor doesn't think it is? Should I find a new one? I'd like to minimize any misdiagnoses if I can help it.
  • Where do I go from here? (sorry to be so vague but I've researched this many many times while waiting for my follow up appointment and just don't know what to do about this...I'm not very good with waiting lol)
I see my sleep doctor this Thursday. I have stuff I've researched to show him and I will have almost a month of a journal with sleep habits/problems including my PAP therapy trial. I don't want to come on too strong but I do want to have the best care I can get which I won't get if I'm inactive.

Anyhoo, I'm starting to ramble now. Sorry again for the novel but this is something I needed to get out coherently.


PS has anyone been on Propranolol/Inderal? if you have, what are your experiences with it? I just started last night and I don't know if it increased my SP or if my SP was increased because of stress.

Ben

#2 okami

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Posted 10 April 2011 - 05:18 PM

Went to the doctor again last Thurs for my appt. I told him all my symptoms and lo and behold, he wanted to do more tests. So more tests it is.

I'll be wearing this wrist thing that records my movements then after 2 weeks of that, I'll have another PSG with MSLT following. At that point, I'm expecting he'll know more and can give me the answers I'm looking for

Ben

#3 wisher

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Posted 21 April 2011 - 03:34 PM

Hi Okami,

I read your thread when you posted it, but didn't reply because I wasn't sure I was qualified enough to give you answers. However, I see that nobody else has replied, so I am here to at least offer you some emotional support.

  • There have been times in the past where I've fallen down while laughing but I got up pretty quickly and I wasn't paralized.
  • When I'm carrying something heavy or bulky, and someone makes me laugh, I can't hold on to it and it falls.
  • When I get startled/nervous, I feel weak
  • I slur my speech when nervous or angry
All of those sound like cataplexy to me. I experience similar instances. My cataplexy is somewhat mild but has been getting progressively worse. So just because you're not completely paralyzed doesn't mean that it's not cataplexy.

I'm surprised that your doctor isn't doing the MSLT sooner. Is the APAP helping, or is it still useless? (I was on a CPAP for a few months and it did nothing for me either.) I'm curious about the wrist thing he is making you wear. What exactly does it do and why do you have to wear it?

In any case, I wish you the best of luck with getting this sorted out. We all know how frustrating this can be.

-Wisher

#4 Enginerd

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Posted 22 April 2011 - 05:22 PM

I've been on Propranolol for reasons unrelated to sleep issues, so I can't comment on whether or not it affected sleep paralysis (I can't say I noticed any change because I've only had sleep paralysis a few times in the past year and I was on Propranolol for about a year prior), but it did lower my blood pressure, make me significantly more fatigued, cause me to have a lot of nightmares during sleep, and made me feel very cold. The highest dosage I took was 120mg/day.

#5 okami

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Posted 24 April 2011 - 09:44 PM

Hi Okami,

I read your thread when you posted it, but didn't reply because I wasn't sure I was qualified enough to give you answers. However, I see that nobody else has replied, so I am here to at least offer you some emotional support.

  • There have been times in the past where I've fallen down while laughing but I got up pretty quickly and I wasn't paralized.
  • When I'm carrying something heavy or bulky, and someone makes me laugh, I can't hold on to it and it falls.
  • When I get startled/nervous, I feel weak
  • I slur my speech when nervous or angry
All of those sound like cataplexy to me. I experience similar instances. My cataplexy is somewhat mild but has been getting progressively worse. So just because you're not completely paralyzed doesn't mean that it's not cataplexy.

I'm surprised that your doctor isn't doing the MSLT sooner. Is the APAP helping, or is it still useless? (I was on a CPAP for a few months and it did nothing for me either.) I'm curious about the wrist thing he is making you wear. What exactly does it do and why do you have to wear it?

In any case, I wish you the best of luck with getting this sorted out. We all know how frustrating this can be.

-Wisher


Thanks for replying! It seems like this forum just isn't as active as I thought it would be when I signed up, lol.
sounds weird but I guess I needed to know whether someone else thought those things were Cataplexy even though I look at them and see that. It just seems normal for me even though it's not normal for other people.

For my first sleep study, we had planned an MSLT following the study unless I had sleep apnea. Since I had mild sleep apnea throughout the night, they sent me home with an APAP machine that morning to see if that would solve my sleepiness. After about a month on it now, my sleepiness hasn't gotten better and seems to actually have gotten worse (but I don't think that's due to the machine).

Not only has my sleepiness gotten worse, I feel like most of my other problems have worsened as well. It seems like every other week I experience some level of sleep paralysis which increases as I get more tired. I've now had a couple times where I've hallucinated also. This past weekend was pretty bad for me since I was out of town and had to sleep in another bed. It was also my best friends bachelor's party so I had to stay up and be active and when he woke up, I had to wake up (which didn't work out well for me after getting 2 nights in a row with 6 hours and 5 hours of sleep). gah!

The wrist band thing is an Actigraphy, I believe. I was told that it measures movement. Supposedly it's telling the technicians how many times I wake up in the night based on what movement it records. I don't know how accurate it is since I'm also experiencing sleep paralysis but we'll find out :)

I have my second sleep study tomorrow night and no matter what, I have the MSLT on Tuesday!! I'm both looking forward to it and worrying about it. I just want to be a clear cut case so I can start treatment lol!! I'll post back with the diagnoses whenever I get that (IF I get that, lol).

I've been on Propranolol for reasons unrelated to sleep issues, so I can't comment on whether or not it affected sleep paralysis (I can't say I noticed any change because I've only had sleep paralysis a few times in the past year and I was on Propranolol for about a year prior), but it did lower my blood pressure, make me significantly more fatigued, cause me to have a lot of nightmares during sleep, and made me feel very cold. The highest dosage I took was 120mg/day.


Thanks for replying with your experiences with Propranolol. Maybe the excess sleepiness I'm feeling is from the Propranolol then. But my blood pressure is also down :) I believe I'm on 60mg/day which for the most part, is working for me. I still have a few migraines (the reason for the prescription) but it's not every day like before.

#6 Enginerd

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Posted 24 April 2011 - 11:15 PM

Thanks for replying! It seems like this forum just isn't as active as I thought it would be when I signed up, lol.
sounds weird but I guess I needed to know whether someone else thought those things were Cataplexy even though I look at them and see that. It just seems normal for me even though it's not normal for other people.

For my first sleep study, we had planned an MSLT following the study unless I had sleep apnea. Since I had mild sleep apnea throughout the night, they sent me home with an APAP machine that morning to see if that would solve my sleepiness. After about a month on it now, my sleepiness hasn't gotten better and seems to actually have gotten worse (but I don't think that's due to the machine).

Not only has my sleepiness gotten worse, I feel like most of my other problems have worsened as well. It seems like every other week I experience some level of sleep paralysis which increases as I get more tired. I've now had a couple times where I've hallucinated also. This past weekend was pretty bad for me since I was out of town and had to sleep in another bed. It was also my best friends bachelor's party so I had to stay up and be active and when he woke up, I had to wake up (which didn't work out well for me after getting 2 nights in a row with 6 hours and 5 hours of sleep). gah!

The wrist band thing is an Actigraphy, I believe. I was told that it measures movement. Supposedly it's telling the technicians how many times I wake up in the night based on what movement it records. I don't know how accurate it is since I'm also experiencing sleep paralysis but we'll find out :)

I have my second sleep study tomorrow night and no matter what, I have the MSLT on Tuesday!! I'm both looking forward to it and worrying about it. I just want to be a clear cut case so I can start treatment lol!! I'll post back with the diagnoses whenever I get that (IF I get that, lol).



Thanks for replying with your experiences with Propranolol. Maybe the excess sleepiness I'm feeling is from the Propranolol then. But my blood pressure is also down :) I believe I'm on 60mg/day which for the most part, is working for me. I still have a few migraines (the reason for the prescription) but it's not every day like before.


I thought the same thing about the forum. Like someone pointed out in another post--a lot of us are probably too sleepy to post most of the time lol. I'm trying to make an effort to keep up with the latest threads, though, and respond if I have any useful input. If only there were a faster exchange of information...this is all fairly new to me, so I'm craving more discussion, stories, and insight.

Your description of symptoms sounds like it could definitely be cataplexy, in my opinion. From what I've read about cataplexy, it manifests differently from person to person, and can vary in severity. The fact that you've been able to link your episodes of muscle weakness with emotional experiences like laughing, feeling nervous, and feeling angry is very suspicious of cataplexy. Coupled with your description of "microsleeps". I missed a lot of what I think are my cataplexy episodes because they aren't obvious and are very short in duration, but I began experiencing sleep paralysis as my daytime fatigue was worsening to unmanageable levels. This was a strange enough sleep behavior to make me visit my doctor for the sleep study that finally diagnosed it (my third study, including MSLT). I bring this up because you had mentioned recently beginning to experience sleep paralysis, yourself.

I'm surprised your doctor didn't have you go through with the MSLT anyway given your suspicious symptoms. It is possible for a person to have more than one sleep disorder, and it may have eliminated the need for you to have a second PSG. My first sleep study turned up moderate obstructive sleep apnea, but I still had the MSLT the following day. Regardless, I'm glad you were able to schedule the MSLT so quickly. It sure sounds like you need it.

The wrist band you mentioned is an Actigraph, I believe. I wore one for a few months as part of a research study one of my graduate professors was conducting, and not because my own sleep problems...but I'm pretty sure my professor was shocked with my results (I had a crazy sleep schedule). The Actigraph is worn like a watch and it just measures your wrist movement, which has supposedly been proven to be an accurate predictor of whether or not a person is awake. I.e. if you are moving your wrist, you're awake; if your wrist is not moving/the Actigraph is not detecting any movement, then you're probably asleep. Sleep paralysis won't affect the Actigraph measurements that occur as you sleep, so don't worry. Here's why: Basically, muscle tone is decreased during REM sleep--muscles are almost completely shut off, except for the muscles required for breathing--because REM sleep is a state very similar to being awake except with a high propensity for dreaming. Your body realizes that you might actually "act out" dreams if your muscles aren't prevented from doing so, which is why muscle tone decreases during the deeper sleep stages (3 and 4) and REM sleep. It prevents you from sleepwalking, or possibly injuring yourself by jerking your arm into a wall, for example. Sleep paralysis usually occurs as you're waking up and your brain reaches consciousness slightly faster than your muscles are turned back "on", leading to temporary, but harmless paralysis. Usually, the sleep/wake systems controlling this are in sync, so most people are able to wake up and move without a problem. I haven't read about sleep paralysis happening multiple times throughout the night for a person (usually it's as a person falls asleep or wakes up), but either way, whenever your muscle innervation kicks in following the temporary sleep paralysis, the Actigraph will be able to record any wrist movement that occurs. Since it's unlikely you're suffering sleep paralysis every time you have an awakening during the night, these awakenings should easily be recorded as long as you're moving. What the Actigraph can't record are "arousals", or episodes where your brain wakes up during sleep without you consciously waking.

As for Propranolol, I started out on a low dosage...it was 60 or 80mg, then worked my way up to 120mg. I was also prescribed it for migraines, but had to stop taking it because I switched to Metoprolol for a cardiac arrhythmia. I was on both beta blockers for a few weeks and that was rough. I'll be honest, though. Propranolol made me REALLY tired, especially as I increased my dose. If you find out you do have narcolepsy, you might want to talk to your neurologist about other options for treating your migraines that don't involve beta-blockers. I'm giving Topamax another try. They were going to drop me from Metoprolol to put me on a really high dose of Propranolol to treat both the migraines and the arrhythmia, but upon hearing I had narcolepsy, they dropped that idea pretty quickly. As far as I know, Propranolol doesn't cause or exacerbate sleep paralysis; it just greatly increases daytime sleepiness because your heart rate and blood pressure drop, and the effects of catecholamines, like epinephrine, are blocked. Beta-blockers also cause nightmares.

I hope at least some of this helped and didn't send you into an episode of microsleep or a full-fledged nap! Good luck on your next sleep study/nap study and keep us all posted on the results, even if it takes us some time to lift our heads off of our keyboards! :blush:

#7 okami

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Posted 25 April 2011 - 01:23 AM

I thought the same thing about the forum. Like someone pointed out in another post--a lot of us are probably too sleepy to post most of the time lol. I'm trying to make an effort to keep up with the latest threads, though, and respond if I have any useful input. If only there were a faster exchange of information...this is all fairly new to me, so I'm craving more discussion, stories, and insight.

Your description of symptoms sounds like it could definitely be cataplexy, in my opinion. From what I've read about cataplexy, it manifests differently from person to person, and can vary in severity. The fact that you've been able to link your episodes of muscle weakness with emotional experiences like laughing, feeling nervous, and feeling angry is very suspicious of cataplexy. Coupled with your description of "microsleeps". I missed a lot of what I think are my cataplexy episodes because they aren't obvious and are very short in duration, but I began experiencing sleep paralysis as my daytime fatigue was worsening to unmanageable levels. This was a strange enough sleep behavior to make me visit my doctor for the sleep study that finally diagnosed it (my third study, including MSLT). I bring this up because you had mentioned recently beginning to experience sleep paralysis, yourself.

I'm surprised your doctor didn't have you go through with the MSLT anyway given your suspicious symptoms. It is possible for a person to have more than one sleep disorder, and it may have eliminated the need for you to have a second PSG. My first sleep study turned up moderate obstructive sleep apnea, but I still had the MSLT the following day. Regardless, I'm glad you were able to schedule the MSLT so quickly. It sure sounds like you need it.

The wrist band you mentioned is an Actigraph, I believe. I wore one for a few months as part of a research study one of my graduate professors was conducting, and not because my own sleep problems...but I'm pretty sure my professor was shocked with my results (I had a crazy sleep schedule). The Actigraph is worn like a watch and it just measures your wrist movement, which has supposedly been proven to be an accurate predictor of whether or not a person is awake. I.e. if you are moving your wrist, you're awake; if your wrist is not moving/the Actigraph is not detecting any movement, then you're probably asleep. Sleep paralysis won't affect the Actigraph measurements that occur as you sleep, so don't worry. Here's why: Basically, muscle tone is decreased during REM sleep--muscles are almost completely shut off, except for the muscles required for breathing--because REM sleep is a state very similar to being awake except with a high propensity for dreaming. Your body realizes that you might actually "act out" dreams if your muscles aren't prevented from doing so, which is why muscle tone decreases during the deeper sleep stages (3 and 4) and REM sleep. It prevents you from sleepwalking, or possibly injuring yourself by jerking your arm into a wall, for example. Sleep paralysis usually occurs as you're waking up and your brain reaches consciousness slightly faster than your muscles are turned back "on", leading to temporary, but harmless paralysis. Usually, the sleep/wake systems controlling this are in sync, so most people are able to wake up and move without a problem. I haven't read about sleep paralysis happening multiple times throughout the night for a person (usually it's as a person falls asleep or wakes up), but either way, whenever your muscle innervation kicks in following the temporary sleep paralysis, the Actigraph will be able to record any wrist movement that occurs. Since it's unlikely you're suffering sleep paralysis every time you have an awakening during the night, these awakenings should easily be recorded as long as you're moving. What the Actigraph can't record are "arousals", or episodes where your brain wakes up during sleep without you consciously waking.

As for Propranolol, I started out on a low dosage...it was 60 or 80mg, then worked my way up to 120mg. I was also prescribed it for migraines, but had to stop taking it because I switched to Metoprolol for a cardiac arrhythmia. I was on both beta blockers for a few weeks and that was rough. I'll be honest, though. Propranolol made me REALLY tired, especially as I increased my dose. If you find out you do have narcolepsy, you might want to talk to your neurologist about other options for treating your migraines that don't involve beta-blockers. I'm giving Topamax another try. They were going to drop me from Metoprolol to put me on a really high dose of Propranolol to treat both the migraines and the arrhythmia, but upon hearing I had narcolepsy, they dropped that idea pretty quickly. As far as I know, Propranolol doesn't cause or exacerbate sleep paralysis; it just greatly increases daytime sleepiness because your heart rate and blood pressure drop, and the effects of catecholamines, like epinephrine, are blocked. Beta-blockers also cause nightmares.

I hope at least some of this helped and didn't send you into an episode of microsleep or a full-fledged nap! Good luck on your next sleep study/nap study and keep us all posted on the results, even if it takes us some time to lift our heads off of our keyboards! :blush:


I'll have to give people on here the benefit of the doubt, then, when it comes to replying :) I certainly know the feeling ^.^

This past weekend I hit the point where I didn't want to do anything, period. I didn't want to hang out with my best friend and almost didn't drive out to him just because I felt so tired! I wouldn't say it's unmanageable yet but caffeine has def stopped working for me (even 400mg of caffeine pills don't work)!

Are the sudden/quick slumping while driving microsleeps or are they cataplexy do you think?

I haven't had such a strong sleep paralysis episode since my first one but I do have them at least every 4 days or sooner. Most of the time, tho, it's pretty mild. Like this morning, I kept waking every 30 mins or so because people were talking loudly and each time my muscles would hurt in that way and take awhile before I could move. It lessened each time though. And when I do have SP, I usually have it a couple times a night.

I think the reason why my sleep clinic requires to get any apnea treated before the MSLT can continue is that it can be a great contributor to EDS even if it's mild. Since I had mild SA, they needed to get that treated first. I think they can do that, too, since the waiting list for a sleep study is only 2 weeks or so.

Yes, I'm wearing that actigraph thing. It's getting rather annoying but it comes off on Tuesday :)

If I'm diagnosed with N, I'll talk beta-blockers over with my doctor. I don't need something that will give me more sleepiness than what I already have!

Thanks again for replying! I'll keep in mind that PWN can't easily be active on forums :)

#8 cnlmustard

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Posted 23 February 2013 - 11:44 PM

Was reading this thread, Okami are you still there?