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I've been tested for Narcolepsy twice. First time failed and almost got diagnosed, second time went stir crazy all night and left the clinic.

Okay, the way this clinic diagnoses Narcolepsy is to turn out the lights at 1030pm, and wake you up at 6am. Then, they keep you up for two hours, and then let you sleep for 15 minutes. They do this about 4 or 5 times.

Now, if you go to sleep in most or all the 15 minute blocks, and reach REM sleep then you're considered to have Narcolepsy.

Here's my problem...

I have clinical hypersomnia (technical term in signiture) and my normal need for sleep is 12 to 16 hours. And even if I do go to sleep at 1030pm on the dot, waking up at 6am isn't enough sleep for me. So naturally when I wake up I'm still tired, and will reach REM sleep in atleast the first 4 blocks of 15 minutes.

Am I correct to assume that a Narcolepsy is a misdiagnosis and I'm the only sane one in the sleep clinic while my doctor is extremely loopy and won't listen to me? Or am I the one confused?

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Am I correct to assume that a Narcolepsy is a misdiagnosis

am I the one confused
Yes, sorry.

I have narcolepsy and if I am not on some sort of stimulant, I will naturally sleep 16-20 every day and still be tired. There are only slight variations in the diagnosis of N or IH. In N, there are usually some clear cut patterns, but both make the sufferers sleep all the fucking time. With N, during your overnight study, the docs should notice your sleep architecture is all screwed up. You may have many awakenings per hour, even you don't realize it. You most likely will have very little stage 3 sleep and no stage 4 sleep. However, you will have way to much REM sleep.

The clinic you are attending is doing the studies correctly. I felt like dogshit when they woke me up and was cranky as hell during my all day torture test. I couldn't sleep at all the first one and had to stay for all five of those bastard naps. I did crash and burn on the remainder and fall into REM sleep in two or three (can't remember). I had a hard time staying awake between naps and my sleep tech made me get up and walk around. I told him I didn't like him very much and he laughed, saying the MSLT (day nap test) folks never do.

The ONLY reason they will diagnose IH is because they cannot prove a clear cut case of N or another sleep disorder, yet they realize something is wrong. The problem is they cannot put their finger on what.

If you are that tired and need more sleep, I find it odd you did not nap or get to REM sleep in your daytime naps. Of course, many of us have to take the test multiple times for varying reasons. It's too cold, we were too anxious, there was construction or too much noise, blah, blah. You must fall asleep in so many minutes and enter REM in so many minutes in so many tests to get the N diagnosis.

Did your sleep doc order the N blood marker tests? These are not 100% and will not prove N on their own, but my sleep docs says he wants to know. Of course he leads a sleep clinic and is helping compile data on how many of us with N have the genetic markers. Most do, but some don't and a few folks have them but don't have N.

Do you have Cataplexy at all? Don't forget, it will be masked by most AD meds. What about sleep paralysis or hallucinations? Some of us with N have these things and some don't.

I'll check back to see if you post some more in case you have questions. I feel like my diagnosis I've become an expert on sleep because of the loads of research I have done.

Good luck. Sleep issues suck ass.

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Don't be sorry I know zero about sleep disorders.

And about stimulants, they put me to sleep. Was on Provigil for Narcolepsy for about 6 months and I slept more than ever. An hour after taking it I would crash. And it would give me zero energy in the hour I was awake.

No cataplexy as far as I know of. And no paralysis. And halluycinations...I wouldn't know the difference from the cause between Scizophrenia and sleep. I hallucinate all the time.

Never heard of the blood marker tests. So I'm guessing they were never taken. Or I am just that distant.

Thanks for your help, I really appreciate it. Agreed. Sleep issues suck ass.

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  • 2 months later...

When I got diagnosed in 2005, my pdoc just never bothered with a formal diagnosis, just gave me Provigil for EDS symptoms.

For what it's worth, I do lapse into REM sleep rapidly. Even a 20 minute nap causes me to thrash sweatily with vivid dreams (and always has, as far back as I can remember, before I was on any meds at all).

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  • 2 weeks later...

There is a blood test that one doc told me is usually positive in a majority of people with narcolepsy. but not always. mine was not, but i have it b/c i had the s/s and the catalepsy thing. I recall just dropping to the floor twice in about 6 months. happened without warning and no pain accompanied it. strange. It used to happen when i was a child-no one ever knew what it was. i tried provigil but due to other problems , it was way too over stimulating. now that i have restless leg syndrome that btw is spreading- i can't use any kind of stimulants.

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There is a blood test that one doc told me is usually positive in a majority of people with narcolepsy. but not always.

do you remember what the test was? i'd really love it if it were that easy to pin down....

- rita

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Many docs will put a person with Narcolepsy on a drug to help repress some REM sleep. It's a very good idea and works rather well. I still get too much REM, but less than before.

Personally, I find that Remeron helps normalize my excessive REM sleep.

Cymbalta does, as well, and apparently I'm not the only one who's seeing its potency...

[i think I cited the same article some time last year on here for the same reason, but whatever, here goes...]

Duloxetine increases stage 3 sleep and suppresses rapid eye movement (REM) sleep in patients with major depression.

Kluge M, Sch

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no i do not have any idea what the test was, (the doc was a pulmonologist helping me with my sleep apnea problems) and she was that in a lot of cases the test is positive if you have narcolepsy, but being neg does not rule it out. i will call her next week and see if she will give me the name of the test. I know it is not a commonly ordered test.

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After my first meeting with my sleep specialist, he ordered the blood test for me too. He was convinced I had N even though I had not done the MSLT yet. He said the blood tests are not proof either way, but he runs a huge research facility and is gathering information. Some who have the markers don't have N and some who do have N do not have the markers, so the blood test alone is not enough to prove N. However, if you present with symptoms and have the markers, you can bet your butt you have Narcolepsy. Any good sleep specialist will know what the test is. Ask your doc to order it if he/she doesnt' automatically send you for one.

Cymbalta made me crazy. Literally. I would look at people's faces and wonder what it would be like to take a razor and cut out their eyebrows. They took me off that one pretty quicky. ;)

I cannot take regular stimulants either because I have an aneurysm on my ascending aorta. So, the only thing I can take is Parnate, which is an MAO inhibitor. It's the most stimulating AD around, it controls most of my cataplexy, supresses some REM and it mostly controls my myoclonus too. For me, it's the wonder drug. It is also the only thing that has ever worked. I still have many problems, so it's not a cure, but it keeps me from sleeping 20 hours a day and does give me some energy most of the time. And it helps anxiety somewhat instead of increasing it like most stimulating drugs.

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