7 replies to this topic

[Silverfae]

Hi everyone,

 

I am going to have my first sleep study done soon, and they sent me a questionaire to fill out.  My doctor is sending me because I am having a lot of daytime sleepiness, am overweight and I have loss of lordosis in my neck which he felt meant that I had OSA.  As I was filling out the questionaire, I got to some questions about hallucinations and sleep paralysis and I thought those may be symptoms of OSA so I decided to look them up and found they are more widely associated with Narcolepsy. 

 

So here is my question - I do not snore, unless I have a cold.  I have never been told that I gasp for air at night. My husband is a very ligght sleeper so I do believe he would notice these things. I do realize that OSA can occur without these symptoms though.

 

What I do have is:

 

-sleep paralysis that started at some point between 6 and 8 years old, at this point 5 or 6 times a month.

-hypnagogic hallucinations that started when I was 13 or 14 and sound like someone shouting my name right next to my ear as I am about to fall asleep, or sometimes growling.  I was convinced as a teenager that we had a poltergeist in our house because of this.  This happens a few times a week and generally jerks me out of sleep. 

-Intense dreaming that often starts in seconds of my falling asleep.  I know this because if it's a nightmare I will jerk myself awake out of it and only a minute of so has passed since I last looked at the clock.  This has been happening most of my life.

-Periods during the day (though not every day) where I get so tired I don't really know what's going on and get really scared that I am just going to fall asleep no matter where I am.  This is what brought me to the doctor in the first place - I tried to explain that while I am always tired, this is a profound tiredness that is unlike anything I have ever experienced before, but I would liken it to taking a vicodin.  The feeling that I absolutely must sleep right this second.  But it goes away after a little while and I just feel normal tired again, but it often come back later in the day.

-I could and always have been able to go for a nap at any point in the day, usually for several hours.  I would say I fal asleep in under 5 minutes most of the time when I lay down and never more than 10 minutes.

-I have always needed at least 8-10 hours of sleep a night to be functional - more to be happy.

-My Epsworth Sleepiness Scale score is 15

 

I do not have cataplexy, as far as I know.  I do get jelly legs when I am intensely scared, but I think that's just normal - but then again, I thought all of this other stuff was normal up until yesterday.

 

So is this just OSA, or is it possibly Narcolepsy?  The only time I ever really fall asleep without being able to help it is when I am a passenger in a car, reading a book or watching tv.  I guess I had this idea that Narcolepsy meant falling down asleep randomly with no warning, and the more I have read the more I find that this might not be true.  But I have also read a site that said all these symptoms can occur with OSA.  Hopefully the sleep study will tell me more, but I was just curious.

 

Thanks!

[DeathRabbit]

Well I would elminate OSA first. It's by far more common. It osunds like you were having issues long before the onset of any apnea, but maybe try a month or so on a CPAP and see if you get any help. Intense sleep deprivation can cause lots of Narcolepsy-like symptoms, thus making N really hard to diagnose.

[Hank]

If you are concerned about Narcolepsy and want to be sure about it, you will need an MSLT (daytime nap test) following your PSG (night test). The MSLT is where the Narcolepsy diagnosis is made. Tell your doc about these symptoms so they are taken seriously. I hope you get  your answers.

[sk8aplexy]

Hmm. 

First I'll just say that you might talk with your doctor and arrange with the sleep lab, if this is possible your doctor would need to agree and make the arrangements likely.

But, that you would benefit to have an MSLT (Multiple Sleep Latency Test), 'if' you get through the Polysomnography (sleep study) with 'no Sleep Apnea' issue/s.

I say that because Polysomnographies are not cheap and hopefully you have no sleep apnea issue; since MSLT tend to require that you have a Polysomnography the night prior, such arrangement/s may save you a lot of money and headache.

Sleep techs, can be very assumptive and/or presumptive, some accurate and some not, some will be rude and some can be very sensitive while nice..

For instance though, some perhaps not understanding what so ever the complexity of Narcolepsy and also being so used to Obstructive Sleep Apnea being the case, that they overlook the obvious and disingenuously so.  The Sleep techs do not make the report though, they do the prepping, monitoring and scanning.

 

Hopefully, whatever is going on is figured easily and you do not go through any ordeal/s, which may be unnecessary...

 

The below is only to give you awareness diving into sleep apnea/s.  Am not trying to intimidate or lead you in any direction.

That being said, unfortunately, there are very uncommon and some more common, variations of sleep apnea. 

-Obstructive Sleep Apnea being 95% the case, it is the standard and familiar one - CPAP (continuous positive airway pressure) is the typical breathing machine.

-Myself, I have 'Idiopathic Central Sleep Apnea', this is not very well understood (similarly, like Narcolepsy with Cataplexy).  It has to do with the respiratory muscles and the brain, having some communication/s issues or co2/oxygen signaling matters - BiPAP (Bilateral Positive Airway Pressure) or VPAP ASV (ventilator positive airway pressure adapt-servo ventilator) are the types of breathing machines used for this - I was unable to tolerate the treatment (over a long course of time, trying so hard), it caused the severity of many of my health matters (many ENT and N w/ C related) to increase, some very dramatically.  'Please know' though that for many, and I believe most people who try such devices/treatment, it does work wonders and really does help them. I was simply unfortunate, with the co-morbid conditions which I have...

-There is also Mixed/Complex Sleep Apnea, Cheyne–Stokes breathing - VPAP ASV... 

Both Central and Mixed/Complex Sleep Apneas, can be related to heart issues.

 

Ask anything.

The best of luck.

[Silverfae]

Thanks everyone for your answers - I am lucky in that my husband has a long time friend who is a sleep tech, and my doctors were able to refer me to the lab he works at, and I know he has a lot of experience and is very good, and has also known me for years.  I hope all of these things help me in my way to a diagnosis. 

 

I think I was mostly just startled to read that I have had 3 symptoms of Narcolepsy for most of my life (I am 33 now) and no one has ever mentioned those things were anything but normal, even when I brought them up with my doctors.  But I have also read they can be symptoms of sleep apnea - whatever the case, I am definitely very tired and not sleeping well.  Hopefully this sleep study will give me some answers!

 

One more question - I hadn't really thought about it, but in the last 5 years (since my symptoms have gotten worse - also since I have had a baby which contributes to my sleeplessness), I have noticed that when I get an extreme case of anxiety, my right eye shuts for about 10-30 seconds and I can't open it.  It actually happened while I was on the table having a c-section, and I was already having an anxiety attack and was convinved that this was some sign that things were not all right since they had me mostly cut open at that point.  But it has continued to happen any time I have an anxiety attack - is this possible cataplexy?  It never happened to me before this point, and I have definitely had anxiety off an on throughout my life.

[munky]

Mine started with going to the doctor because I was apparently falling asleep at work without noticing it. I say "apparently" because it took a long time for anyone at work to convince me that might be the case. By 'not noticing it', I mean I never realized I was falling asleep, didn't feel like I was being woken up when someone said something to me. Far as I knew, I'd just been sitting, watching my computer screen, surfing the 'net ...

 

Anyway, because of some other issues, my primary care doctor sent me to a neurologist who also is a sleep specialist. Because I'm overweight, and because my mother said I "sometimes snore, when I fall asleep in the recliner in the living room," he wanted to rule out OSA before anything else. So, he scheduled the PSG, with the MSLT contingent upon the results of the PSG. In other words, the sleep lab was notified and prepared for both tests, but if the PSG showed any signs of OSA, we would not go on to the MSLT. We would, instead, treat the OSA first, see if that cleared things up, then schedule more tests if it didn't.

 

In my case, despite being overweight and my mother's report that I sometimes snore if I fall asleep in the chair, there was no sign of any apnea and we went on to the MSLT. Can you have your doctor schedule it the same way? A PSG with an MSLT contingent upon the results of the PSG? Might make things a little easier on you.

[Tre]

Not sleeping well for any reason can cause HH, sleep paralysis and other REM symptoms.  An MSLT should not be done until a proper PSG is done.  So if you end up with apnea they won't run the day test (MSLT) it will be cancelled until they treat the apnea.  Then if you still have issues you go in for another study.  If something interfers with the PSG the MSLT is basically not an accurate test anymore.

[munky]

Exactly what I was trying to say, Tre! Thank you for making it so much clearer than I was able to! I've been struggling a lot with that lately, and often find that what seems clear to me is only confusing to others. It's gotten to the point that before I send out any detailed emails at work, I run them past one of my co-workers to make sure it actually does make sense to someone other than myself!