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#1 Joel

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Posted 06 September 2012 - 10:41 PM

Ok, I thought maybe I'd take a stab at presenting my case to see if anyone has any insights I've yet to glean... I apologize for the considerable length of this.

Over the last couple of years I've found myself falling asleep while driving or at my desk with increasing frequency, but in the last few months or so, it seems to have gotten noticeably worse. Actually, I can point to a period of six months last year where I worked on a programming job from about 3 am to 7 am, then went to work, and hit bed by 8pm. For months after that, my sleep schedule was routinely screwed up (I'd go to bed at midnight, or get really tired and crawl in bed at 8 pm, only to get up at 2 or 3 am).

Recently, I'd been sleeping regularly (10 pm to 5:30am or so), without an alarm clock, but I'd get up tired and stiff, and have multiple "energy crashes" throughout the day. Thus I went to see my GP a couple weeks ago.

I described my symptoms and he thought I might have narcolepsy. So, he scheduled an overnight sleep study with a possible MSLT the following day. I did the MSLT, but later found out they only did four naps instead of five. Apparently, the techs saw I hit REM sleep in two of the naps and decided they had enough data. The problem is, my mean onset time was about 9.25 minutes, where 8 minutes or less is what's needed for a "positive" diagnosis. Truthfully, I had a hard time sleeping during the MSLT because I was thinking a lot. I think in a more "normal" environment, I'd probably have had a lower mean onset time.

Because of the longer onset time, the sleep doc considers me to be an "early onset" case. Which may also account for why I don't hallucinate, experience sleep paralysis (certainly not to any extent that I can claim), or have cataplectic attacks... I'm just extremely sleepy during the day and have periods of insomnia alternating with periods of regular (7-7.5 hour) uninterrupted sleep. Further, I seem to remember my paternal grandfather frequently nodding off while people were talking or when he was watching TV. My dad confirmed he'd struggled with that problem most of his life.

So I might have a hereditary indicator of narcolepsy in my grandfather... But as I survey the forums and listen to people describe their experiences, I have to admit, mine are sorely lacking in comparison. Again, that might make an "early onset" case reasonable, but the point that stands out to me is that no one else seems to be diagnosed in this way... That is, it seems to me that a diagnosis of narcolepsy where the symptoms aren't significantly severe is atypical, at the least.

Anyway, the sleep doc said he wasn't going to diagnose me as having narcolepsy for a variety of reasons, but was going to prescribe Nuvigil nonetheless.

So here's a few questions:

1. Does the "early onset" diagnosis seem reasonable when it seems most folks are diagnosed as being very clearly narcoleptic?
2 What about the other possible causes (glucose / gluten intolerance, celiac disease, thyroid issues, etc.)? Are there other conditions that can easily create this sort of scenario?

I would also point out that I do experience odd things when I sleep. That is, I will occasionally startle in my sleep, and I seem to think I am hearing a pop or bang-type sound at times. Often, I'm aware that I'm falling asleep / passing into a different phase and when I'm having a period of insomnia, I will startle as I realize this. It's like reacting to the realization that I'm falling asleep while driving. What's odd about that is, I know I'm in bed, I know I'm sleeping, and I know I want to go deeper. But the feeling of moving into a deeper phase freaks me out or something.
Anyway, I sort of regain consciousness, though I never fully wake up. Then, at some point (after a couple hours), I do wake up and spend the next three or four hours surfing the web about narcolepsy. :)

Otherwise, I know I dream, even during naps. I suppose I could call them vivid, but I think I just mean that I'm usually aware of when I'm dreaming - I don't know that they're of any greater intensity or quality than any other dream a person might have.

My conclusion? I have a hard time thinking it could be anything else, honestly. However, not only does it not square with what I perceive to be the typical pathological experience which seems to immediately precede a positive diagnosis, but I also do not see anyone else claiming to be an "early onset" case in any of the forums I've haunted, making the claim that I'm such a case dubious, at best.

Thoughts?

#2 drago

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Posted 12 September 2012 - 02:42 AM

I described my symptoms and he thought I might have narcolepsy. So, he scheduled an overnight sleep study with a possible MSLT the following day. I did the MSLT, but later found out they only did four naps instead of five. Apparently, the techs saw I hit REM sleep in two of the naps and decided they had enough data. The problem is, my mean onset time was about 9.25 minutes, where 8 minutes or less is what's needed for a "positive" diagnosis. Truthfully, I had a hard time sleeping during the MSLT because I was thinking a lot. I think in a more "normal" environment, I'd probably have had a lower mean onset time.


Actually, my mean REM onset time was 8 minutes, and according to the doctors and insurance, it's technically suppose to be 5 minutes. (However, a normal person's onset REM sleep is 90 minutes, so 9.25 and 8 minutes indicate a very obvious problem.)

Because of the longer onset time, the sleep doc considers me to be an "early onset" case. Which may also account for why I don't hallucinate, experience sleep paralysis (certainly not to any extent that I can claim), or have cataplectic attacks... I'm just extremely sleepy during the day and have periods of insomnia alternating with periods of regular (7-7.5 hour) uninterrupted sleep.


The thing is, narcolepsy is a disorder - a collection of symptoms - not an illness or a disease (which are generally tied together by common cause as well as common symptoms). Narcolepsy varies tremendously from person to person. For example, I have had sleep paralysis all my life before I developed EDS/sleep attacks. I have hypnogic hallucinations, but only as part of sleep paralysis. I don't have cataplexy.

I do have periods of insomnia alternating with periods of "good" sleep and even hypersleep.

Another symptom of narcolepsy is automatic behavior. Have you ever had that before?

...the point that stands out to me is that no one else seems to be diagnosed in this way... That is, it seems to me that a diagnosis of narcolepsy where the symptoms aren't significantly severe is atypical, at the least.


Only 1 out of 2000 to 3000 people have narcolepsy, so we're all atypical in a way. I've been looking for common co-diagnoses for people with narcolepsy (i.e. how many women with narcolepsy also have PCOS?), but the fact is, almost nothing is written about it because there aren't enough people with narcolepsy.

I went into the doctor's thinking I had a thyroid problem, not a really big sleep/neurological disorder (I assumed the Sleep Paralysis was standalone).

Anyway, the sleep doc said he wasn't going to diagnose me as having narcolepsy for a variety of reasons, but was going to prescribe Nuvigil nonetheless.


There is another way - you could get a lumbar puncture to have your cerebrospinal fluid checked for a lack of orexin (aka hypocretin). If the count is low, that coupled with your mean REM onset time, could get a reasonable diagnosis of narcolepsy.

My diagnosis wasn't based on the "perfect 5 min mean onset REM time" that my doctor needed. She noted I had sleep paralysis all my life, as well as EDS and sleep attacks, which added up to narcolepsy with my mean REM onset of 8 minutes.

So here's a few questions:
1. Does the "early onset" diagnosis seem reasonable when it seems most folks are diagnosed as being very clearly narcoleptic?
2 What about the other possible causes (glucose / gluten intolerance, celiac disease, thyroid issues, etc.)? Are there other conditions that can easily create this sort of scenario?


1. The trouble is... people are NOT 'clearly' narcoleptic. A lot of people are misdiagnosed with depression, bipolar, anxiety or personality disorders. Some are diagnosed with hormone imbalances or dietary issues. I'm sure the list is longer than that. But to be honest, a lot of people don't know they're sick until it becomes unbearable... that's why so many people here have stories of extreme symptoms - they either are misdiagnosed or don't go to the doctor because they don't think there's anything wrong.

2. There are a lot of things that can cause EDS, but most of them have other symptoms. For example, thyroid problems can cause flushing, skin problems, hair problems, in some cases even heart problems. Glucose/Guton intolernace/Celiac's disease is a simple blood test. Actually, a lot of allergies are simple blood tests. You can see an allergy specialist about that. But, like I said, a lot of things that cause EDS have other symptoms that point to the problem - such as stomach problems or visual problems.

I would also point out that I do experience odd things when I sleep. That is, I will occasionally startle in my sleep, and I seem to think I am hearing a pop or bang-type sound at times. Often, I'm aware that I'm falling asleep / passing into a different phase and when I'm having a period of insomnia, I will startle as I realize this. It's like reacting to the realization that I'm falling asleep while driving. What's odd about that is, I know I'm in bed, I know I'm sleeping, and I know I want to go deeper. But the feeling of moving into a deeper phase freaks me out or something.


The startles are called myoclonic jerks. They can happen in narcolepsy, but also in metabolic disorders and other neurological disorders.

If you're hearing something, anything, and there's no indication that the noise is happening (nothing to make a popping noise or a banging noise) then you might be experiencing hypnogogic hallucinations - many of which are purely auditory.

There are a number of other things you might consider asking your doctor about - like getting a head CT to rule out any brain abnormalities.

Keeping a sleep diary can be very helpful for both you and your doctor. Making note of what you ate that day (and when) can also be helpful. For example, eating late might be correlated to myoclonic jerks or insomnia. Jotting down your emotions can also be helpful (i.e. happiness, anxiety, excitement, stress, etc.) in possible connections to sleep hygiene.


Hope you're well,
drago