Narcolepsy Forum Posting

Posted by MD with N on December 19, 2000 at 09:13:12:

In Reply to: Re: Went to MD, he doesn't believe in N! posted by ExhaustedMom on December 02, 2000 at 07:52:56:

Hello!
I read your thread. I am always honest (it keeps me out of trouble, ha ha)when I discuss medicine with people, whether they are pts or friends, family or whoever. A benefit(?) of these forums is anonymity and it is easy to say things more directly than it would be in person.

First off, a REM latency of 12-14 is suggestive of narcolepsy because normal REM latency is 70-120 minutes. However, a latency of 12-14 minutes is also suggestive of sleep apnea (prior REM deprivation). It is also suggestive (though not as strongly) of other problems such as psych disorders (depression, schizophrenia, etc.). Usually a REM latency down to around 5-8 minutes is VERY strongly suggestive of narcolepsy, but different labs use different numbers.

I think it is extremely important to keep in mind that these numbers (REM latency, etc.) have been obtained through alot of testing. Not only have there been studies on narcoleptics and normal (control) populations, but there are also several good studies showing what happens to the REM latency of populations in certain situations. One good study showed that teenagers typically had shorter REM onsets, as did many college students, possibly due to longer hours of coursework, "partying" and other activities that deprived them of sleep. Also, one study showed a population of college students during final exam week who had an average REM onset of around 3 MINUTES. That is very short for non-narcoleptics!!!!

My point here is that, Yes! stress and other things can give you a shorter REM latency.

As far as getting a diagnosis of narcolepsy, neurologists and sleep specialists (typically pulmonologists) go BY THE NUMBERS, but they also have to take into account the whole picture. In your case, if I were your doctor (I am NOT, I don't really know anything about you) I would want to have some other evidence of narcolepsy than a REM onset of only 13 minutes. Maybe you do have narcolepsy, so don't take my word for it. Again, I don't know you personally and I haven't taken your history. Also, I have this disorder and I would probably be biased toward trying to make this diagnosis.

It seems to me you are upset with this doc mainly because you feel he didn't take your problem as seriously as he should have. (That's how I would have felt. If my doc laughed at something that upset me, I would have sat through the rest of the visit, told him kindly just how I felt, and I would have gone straight to another doctor.) I hope I don't sound inappropriate here, but I think you're upset with this doc for a reason other than the lack narcolepsy diagnosis. Don't get me wrong. I think I how you feel. As a physician I probably do not pay as much attention as I should to the way I talk to patients. But, MAN, when I am the patient and I have to go to my doc twice a year just for checkups I AM KEENLY AWARE OF EVERYTHING HE SAYS AND I READ HIS EVERY MOVE, WORD OR GESTURE, to see if there is something he is not telling me or forgetting to tell me. Then when I go back to see my own pts I have to keep reminding myself not to suddenly be overly concerned with how I speak to them. It's an enlightening experience to be on both sides.

Again, since I don't know you I can't give an accurate opinion. As you already said, you lack cataplexy s/s. I'm sure you already read that not all narcoleptics have cataplexy (somewhere between 40-75% depending on what you read), but that 99.9999999% (taking into account a few isolated of cases of cataplexy resulting from head injury) of cataplectics have narcolepsy. But there are also several other keypoints in the history that help with diagnosis:

1. EDS (in the form of random, intense sleep attacks, lasting from 1-2 minutes to several hours, and typically feeling VERY refreshed afterword).

2. sleep paralysis (fairly strong indicator of narcolepsy. Some nonnarcoleptics have it frequently, and ALOT of nonnarcoleptics have it at least once or twice in their life). I don't remember the number, but most narcoleptics have this problem regularly.

3. Hypnagogic (night) or hypnopompic (morning) hallucinations. More commonly hypnagogic in narcoleptics. Frequently occurs with SP.

4. Automatic behaviors. I don't recall the exact percentage, but I think less than half of narcoleptics experience this regularly. Don't quote me on this one. You can look it up.

5.** There are several other s/s that seem to be common in narcoleptics as well as other people, depending on what you read (this forum). LUCID DREAMING for one! This stuff isn't typically mentioned (yet!) in the literature. These s/s are VERY questionably indicative of narcolepsy.

Yet again, I admit that I have no reasonable idea what your medical problem may be. If you have gone as far as having a sleep study and you still don't have a diagnosis of narcolepsy then I think you probably don't have it. It would be a big mistake to miss a diagnosis of narcolepsy if you have it, but it could be a much bigger mistake to diagnose you with narcolepsy if you don't have it. I think it would be fair to get a second opinion though, if for no other reason than to reassure yourself. Maybe your doc was wrong. I admit I'm leaning in his direction though since you have a REM latency of 11-13 minutes, lack cataplexy and ???have the other s/s.

Don't get me wrong, both of my parents have told me they have experienced sleep paralysis at least a few times in their lives. My mom even told me she had hypnagogic hallucinations (I just like typing that because I know how to spell it) several times as a child. One of my three siblings has also had sleep paralysis a few times. Another of my siblings mentioned to me a single episode of hallucination-like sensations as a youth (but it was most likely drug induced, ha ha). Furthermore, both my parents and two of my siblings have sleep apnea and refuse to get treated; my mother can fall asleep almost as fast as me. HOWEVER, NONE OF MY FAMILY MEMBERS, DEAD OR ALIVE, HAVE EVER HAD NARCOLEPSY, CATAPLEXY, OR FREQUENT SLEEP PARALYSIS WITH HYPNAGOGIC PHENOMENA (SP/HH). In summary...... several of my family members have suffered from EDS, and a few have had SP/HH, BUT THEY ALL ASSURE ME THE DO NOT HAVE NARCOLEPSY.

If not narcolepsy, consider sleep apnea (as you already mentioned) and idiopathic hypersomnolence (Note: with IHS, pts usually awake from sleep attacks NOT feeling refreshed. Instead, they usually experience 'sleep-drunkenness'.) Also, consider physical/emotional stress, depression, other psych disorders, medication side effects, etc. You mentioned you have recently been under increased stress. Stress IS A REAL PROBLEM, not to be ignored. However, I would be wary of getting diagnosed with the wrong thing.

One more thing, I have met about 27 pts with narcolepsy, and I also went to a few narcolepsy support group meetings where I met (and got to know more personally than I would on an internet forum) another 10-15 people with narcolepsy. It was very interesting. Aside from our diagnosis, we had NOTHING in common with each other. We were all so different! For those of you reading this, keep this little tidbit in mind as you read the threads in this Forum.

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