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Hypersomnolence And Narcolepsy?


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#1 Saraiah

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Posted 08 August 2009 - 04:07 PM

I received my Family and Medical Leave Act paperwork back from my sleep doc the other day, and instead of listing my diagnosis as narcolepsy (which is what he told me I was diagnosed with on July 7th), he listed the diagnosis as hypersomnolence. So, of course I'll ask him about this when I call him on Monday. But I looked up hypersomnolence, and I have 2 of the critieria: I sleep up to 36 hours at a time if I don't set an alarm, and before Xyrem I woke up exhausted no matter how long I slept. I don't have any of the other criteria, though. And I definitely more than meet the MSLT criteria for diagnosis of narcolepsy. So maybe my sleep doc just made a mistake...

But if not, has anyone else been diagnosed with both N and hypersomnolence?

Saraiah

#2 piglet

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Posted 11 August 2009 - 12:49 PM

Saraiah,

I think you either are diagnosed with one or the other

piglet



#3 Nyx

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Posted 11 August 2009 - 03:30 PM

I received my Family and Medical Leave Act paperwork back from my sleep doc the other day, and instead of listing my diagnosis as narcolepsy (which is what he told me I was diagnosed with on July 7th), he listed the diagnosis as hypersomnolence. So, of course I'll ask him about this when I call him on Monday. But I looked up hypersomnolence, and I have 2 of the critieria: I sleep up to 36 hours at a time if I don't set an alarm, and before Xyrem I woke up exhausted no matter how long I slept. I don't have any of the other criteria, though. And I definitely more than meet the MSLT criteria for diagnosis of narcolepsy. So maybe my sleep doc just made a mistake...

But if not, has anyone else been diagnosed with both N and hypersomnolence?

Saraiah


I agree with piglet. My understanding is that hypersomnolence is simply a description of your symptom - i.e., excessive daytime sleepiness. When they don't know what causes it, they call it idiopathic hypersomnia/hypersomnolence. If you meet the standards for narcolepsy (i.e., two REM episodes during the 4 MSLT naps), then they diagnose you with narcolepsy, which basically includes hypersomnolence. At least that's how I understand it. If having a diagnosis of narcolepsy would actually impact your paperwork/insurance/etc., then I'd give him a call and have him clarify this issue. Actually, I'd do that regardless. It's good that everything's accurate in case you end up having to go to another doctor in the future, or you have problems getting your meds, etc. Here's a basic description/distinction I just found that might be helpful. Ah, interesting. It says that narcoleptics experience REM sleep but hypersomnolents experience non-REM sleep. Maybe I'll look for more info after class. For now, here it is:

http://www.wisegeek....rsomnolence.htm
People suffering from hypersomnolence, sleep an excessive amount of time at night, take long naps during the day, and generally feel drowsy and distracted when awake. This serious neurological sleep disorder can be permanent or temporary, yet it's often misdiagnosed. Hypersomnolence can be related to a genetic predisposition, caused by another health condition, or idiopathic, which means it has no known cause.

If you have hypersomnolence, you need far more sleep than normal people. You might sleep more than 10 hours every night, yet still require extended naps lasting longer than an hour throughout the day. Attempts at waking up, such as phone calls or alarms, are usually ineffective. Even with this much of your life spent sleeping, you won't feel refreshed or rested. Instead, your thinking and motor coordination might be bumbling, cloudy, or confused. If you exhibit these symptoms, make sure to get a proper diagnosis from your general physician or sleep expert.

When your body is recovering from an exhausting condition, like an infection, surgery, or mononucleosis, you can expect some degree of hypersomnolence as you fully heal. Other known causes include sleep apnea and periodic movement of your legs. During the night, those conditions create frequent disturbances in smooth, rejuvenating sleep without completely awaking you. Thus, during the day you may crave naps to make up for poor rest. A build-up of magnesium, a mineral some people take as a vitamin supplement, has been known to cause hypersomnolence. DepressionPosted Image has also been associated with daytime sluggishness.

Temporary hypersomnolence can usually be treated by addressing the underlying cause, such as sleep apnea or infection, until you can depend on a restful night of sleep. Periodic hypersomnolence, called Kleine-Levin syndrome, means you go through periods of normal sleep followed by excessive sleep. While it might be genetic, at this point doctors can only treat the symptoms by prescribing stimulants to keep you awake and alert during the day.

Hypersomnolence differs somewhat from other sleep disorders, such as insomnia or narcolepsy, yet people frequently confuse them. Insomnia, or the inability to sleep through the night, might create excessive exhaustion that in turn causes hypersomnolence. This variety could be only temporary. Narcolepsy is closely related to hypersomnolence in the sense that both make you fall asleep in the middle of the day. Narcoleptics experience REM sleep (which involves dreaming), whereas hypersomnolence sleep is non-REM sleep.



#4 Saraiah

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Posted 12 August 2009 - 07:11 AM

Hi Nyx and Piglet,

Thank you very much for explaining that to me. I still haven't been able to talk with my sleep doc (who is putting my job in grave jeopardy by not returning the corrected FMLA paperwork - see my venting elsewhere). I didn't think it was possible to be diagnosed with both hypersomnolence and narcolepsy, but what do I know? I appreciate your help!

Saraiah

#5 sleepless sleeper

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Posted 13 August 2009 - 03:29 PM

Nyx, you may want to talk to the two sleep docs and a neurologist that I have had. They are all in separate states so they do not practice with one another. My first sleep test put me with a dx of idiopathic hypersomnia AND/or narcolepsy. I had a second test with current sleep doc at his sleep lab, which is rated as being in the top 5 in north america, and he gave me narcolepsy dx but stated that he could understand the idiopathic hypersomnia dx.

The first doc brought up the rem issue, and he did not relay the same info as you. I brought this topic up with my other docs when I met them, and they concurred with the first. Idiopathic is dx for h.s. that cannot be attributed to anything else and it is not transitory, temporary, - meaning it can be a dx on its own. It was my understanding that if h.s. can be attributed to insomnia or other problems such as working grave yard shifts, then it is not idiopathic. It is then explainable and is a symptom of something else as you state. Insomnia is not uncommon for people with narcolepsy. I am one that is blessed with both. I've always had a bit of it, but it did get much worse with the tremendous stress that I experienced during my mother's illness and death. That awful insomnia was attributed to stress, I guess, but my doctor explained how it and narcolepsy can go hand in hand. Also, cataplexy, sleep paralysis, and hallucinations all have a say in final dx.

We can always look at Stanford's cut and dry definition of narcolepsy and cataplexy, but as many of us on this forum can attest to, a lot of us do not fit exactly into the definitions provided. Technically, there are some of us that cannot be absolutely categorized as a pwn because our symptoms are not exact. I have every symptom and each is classic, but there are times that they are not. I have never just gone to sleep with no notice. That used to be the definition that was the yard stick of a dx, and it kept me from being properly dx'd for years. I visited my doc about 3 or 4 weeks ago and discussed what I thought was a manifestation of cataplexy with him. It is bizarre, but he thinks it could be cataplexy.

I'm not sure of the definitions that you've provided, but then again, definitions of all terms related to narcolepsy seem to be amorphous even within the medical community. Even doctors seem to disagree with one another. In sum, I have received a dx of idiopathic hypersomnia, and I have also recieved a dx of narcolepsy.

#6 Nyx

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Posted 13 August 2009 - 05:52 PM

Sleepless - That wasn't what *I* wrote. I just cut and pasted it from the web site I linked right above it. I certainly don't think that insomnia and narcolepsy are mutually exclusive.

Anyway, it's just my theory that there are probably a number of people diagnosed with idiopathic hypersomnia are actually suffering from narcolepsy (i.e., the constellation of symptoms grouped under narcolepsy), but that the one limited MSLT they had did not accurately reflect their condition on that one day. Or perhaps others have REM sleep without atonia, and their tests weren't read taking that into consideration. Who knows? In the general scheme of things I don't think the distinction of the diagnosis is that important, unless it comes down to insurance, getting prescriptions, proper treatment, accommodations, etc. And of course those things tend to matter. That's just my rather random three cents.

#7 Nyx

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Posted 14 August 2009 - 12:09 PM

Sleepless: I just found a good distinction in "Current Diagnosis and Treatment in Pulmonary Medicine":

"Idiopathic hypersomnia is a diagnosis of exclusion. Patients have symptoms similar to narcolepsy but without cataplexy or sleep-onset REM on diagnostic testing."

http://books.google....agnosis&f=false

#8 sleepless sleeper

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Posted 14 August 2009 - 03:06 PM

that's what my current dr said: "dx of exclusion," but it was still a dx. i had understood from the post that ihs was not a dx. sorry. my doctor said that he might give an hour of time to a chat on this site, but the web admin and moderators weren't interested. this would have been an awesome question. there are various definitions listed on the internet, or correct information is available but incomplete. what's hard for all of us is when we have our doctor say one thing, but then another one of us has his/her doctor say another. we truly need a one stop shop for narcolepsy information. i've already started trying to get that going, and i think that there are a couple of other people interested in helping out. if anyone has input that could be helpful it would great to hear from you.