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Am I Narcoleptic?


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#1 cmpokey

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Posted 13 August 2013 - 12:18 AM

Okay.  This will probably be long.  I have had sleeping issues for years.  When I go to bed, I have a real hard time falling asleep.  I will usually see things like something in the window-shadows and get scared.  Sometimes I wake up during night and see color blotches on a white wall in the dark.  But once I am asleep I am fine.  I can sleep for anywhere from 8 to 12 hours, no problem.  The problem is is that when I go to get up, I can't wake up and get going, even after about 8 hours of sleep.  I am so drowsy and feeling like I have been drugged that I can't get going.  I can get up and go to the restroom and still stay in that drowsy state that all I can do is go back to bed.  Usually when the alarm clock goes off, I am in a very vivid dream and/or nightmare.  Most times when I should be waking up cause I have been asleep for 8 to 12 hours already, I am dreaming and can't waken out of the dreamy state.  I have lots of nightmares.  I can remember most of them vividly cause I keep having the same ones or similar ones.  Now, if I get up without at least 8 hours of sleep, I am so sleepy I am non-functional.  I can't think clearly.  I can't drive.  I can't work.  I am completely worthless.  Most days I sleep right through the alarm clock.  I never even hear it.  My son says he thinks sometimes I shut it off then just go right back to sleep.  I have missed lots and lots of appointments cause I sleep right through them or don't have time to make it to them.  Now, during the day I get very sleepy.  I can drink some water, and I will get sleepy.  A small cup of water on most days makes me ready to sleep.  I am so drowsy I have to go to bed and go to sleep.  Now some days I don't get sleepy at all.  Most days water will at least make me sleepy.  At some point if I stay awake for awhile, the sleepiness will finally go away.  Now the earlier in the morning that I get up, even if I have had at least 8 hours of sleep, I will undoubtedly get so sleepy I have to take a nap and it is at least 2 hours or more.  I sometimes have dreams during a nap-short or long.  Now the later in the day I get up, the less likely I am to get sleepy and have to take a nap.  Now when most folks are going to bed is when I start to finally wake up and feel alive like doing stuff.  Sometimes even on those days I got up early and took a nap.  I can still get up early in the morning and stay up until 4 to 6am the next day.  I can never tell when I am going to get sleepy.  I seem to have no problem with my driving and falling asleep.  But I will not drive if I am in those sleepy states. 

I have had several sleep studies and they told me I have sleep apnea-didn't say anything about narcolepsy.  So I have had a CPAP for years now.  I never thought I was narcoleptic cause I thought that meant you would be driving or reading or doing something real important, maybe even working and you just simply fall asleep.  I have been homebound for quite a few years and most of the time not holding a steady job, so maybe it is hard to tell cause if I get real sleepy, I go to bed most of the time.  But I like to fight it seeing how I am almost always sleepy.  I hope I have remembered all the important points.  Sorry this is so long, but I didn't want to miss anything important.  Thank you so much for any help.     



#2 ironhands

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Posted 14 August 2013 - 11:25 AM

If you've been on a CPAP, when was your last proper study, or titration?

 

They likely would have noted your REM latency, do you recall what it was?  Call up the clinic and have them fax your last results.  A normal REM latency is anywhere from 60-120 minutes.  Mine was 6 minutes.  A very low REM latency is generally associated with narcolepsy from what I understand. 

 

I'm not a doctor, and very very new to narcolepsy, but based on those symptoms - particularly the hallucinations, daytime sleepiness, I'd say it's a high probability, if the REM latency is also low.  If your REM latency is normal, then based on my limited knowledge, I have no clue.  Good luck!



#3 cmpokey

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Posted 15 August 2013 - 08:47 PM

I had a study a few years ago maybe.  I had one of those home tests.  Is that a titration?  I need to find out the results for the REM latency.  But since I posted I seen somewhere, maybe here, that narcoleptics do go to sleep fast and I usually don't.  What do you think?  But I am also bipolar, so going to sleep can be very hard when manic.  Thank you so much!



#4 ironhands

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Posted 16 August 2013 - 08:47 AM

A titration study is when they calculate your optimal pressure settings.  They make you spend the night hooked up to the CPAP.  They may be able to do it at home, but that would most likely only be checking your O2 saturation, heart rate, and respiration.  The info we need is from the EEG - electrodes on your head.

 

Narcoleptics usually do go to sleep pretty quickly from my understanding - if you're not getting proper sleep, it would stand to reason you'll be tired throughout the day, and be able to sleep pretty easily and quickly....

 

But...

 

There are a lot of factors that could also be preventing you from sleeping quickly.  Caffeine intake, for one.  Many people will take caffeine in order to stay awake during the day and it will interfere with falling asleep later in the night.  Stress, and depression are another.

 

I would certainly book a full sleep study as soon as possible with your sleep clinic, and not an at-home test.  You'll need a hypnogram (EEG) while you sleep, and quite probably an MLST - this is where you sit for a day in the room and try not to sleep, until they tell you to every 2 hours to take a 20 minute nap. 

 

It could be something as simple as your CPAP not working as well as it should, but your doctors would know much better, especially if they have data from several earlier studies.



#5 cmpokey

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Posted 23 August 2013 - 12:57 AM

It sounds like I need to talk to my doctor about getting a new sleep study.  I have never had that other study you mentioned.  I just know I am always so sleepy in the daytime, but when it is time to go to bed, I start to come alive.  Then it is almost impossible to really wake up in the morning.  I sleep through all alarm clocks and miss appointments.  I can sleep up to and over 12 hours a night.  It's crazy.  I feel like I have slept my life away.  I am either sleeping or trying to go to sleep. 

I use nose pillows.  I hate the face mask.  This new nasal mask comes off easily.  It makes me wonder if it is not staying in and partially coming out during the night.  But my sleep problem has been a really bad issue for years and years.  This new mask doesn't even fit into my nostrils right, but the one I used they stopped making the replacement head gear for it. 

I don't use my cpap for most naps.  Do you think I should? 

Thank you so much for any responses.  :)

Cathy



#6 ironhands

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Posted 23 August 2013 - 03:35 PM

that sounds like a circadian rhythm disorder.  have you tried using the schedule your body feels like it wants to use?

 

if your mask isn't fitting, replace it.  many companies offer a 30 day fit guarantee.  I'd recommend you make a few posts on cpaptalk.com, the folk there are really knowledgeable and it's a very very active forum.



#7 cmpokey

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Posted 26 August 2013 - 05:42 PM

ironhands I am so grateful you posted.  When I looked up circadian rhythm disorders, the non-24 sounded just like me.  I even have symptoms of the worse one, but not everything.  At least I have a  name now for what I have had to deal with for my life.  And I have found out I do sleep better if I wait until around 4 am to go to bed.  When I wake up around 12 noon, I don't have so much trouble with falling asleep.  Unless I have not slept a full 8 hours at least then I get sleepy after awhile.  I need 8 hours of sleep.  And I am working on getting another mask.  I will have to wait for insurance to pay for it or pay it out of pocket right now.  I think it is a defective mask, so they should replace it  no questions asked.  But anyway..

 

I will also post on the other forum.  Again, thank you so much. 



#8 ironhands

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Posted 26 August 2013 - 06:17 PM

the store that unofficially runs that site is great on masks, probably the cheapest/best there is.  If your mask is defective, it might have a guarantee, I'd call the manufacturer.  

 

Glad i could point you in the right direction - it'll at least give you some info to discuss with your doctors.  Don't forget to ask about your REM latency, if it's under an hour, something's not right, and if it's under 15 minutes, something is really not right.  As always, best to speak to your doc since there are already known sleep issues - who knows it may just be something simple with your machine or mask.



#9 cmpokey

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Posted 29 August 2013 - 10:49 PM

well I thankfully I do have insurance to cover the mask I just may have to wait a bit, but I am thinking about buying a new one. 

I just didn't realize that I might have a treatable sleeping disorder.  Or is it treatable?  I have known for years that I had something wrong with my sleep patterns.  I just didn't know what it was or what to do about it. 

I am going to request a new sleep study.  I just found out today I have pulmonary hypertension.  I wonder if this has something to do with the CPAP. 

Thank you so much for all your help.  :)