Normal or narcolepsy?

sleepysusan · Joined: 01 Nov 2009 Posts: 8

I was recently diagnosed, but still can't quite comprehend it all. I've had cataplexy for years, but even sleep doctors have ignored that symptoms. Anyway, I have a new doctor who put it all together. So now I'm realizing that I've had all these really weird symptoms for years, as if cataplexy isn't weird enough. Anyway...

Today, I got up, took a Nuvigil, but was still sleepy. About noon I took a "nap" but never really fell asleep. I was comfy and warm, and had little mini dreams that lasted 5-10 seconds each. I had probably 1-2 a minute for the full 1-1/2 hours. The "dreams" would end when I would think "Oh, that's weird."

It's kind of pleasant, actually. Kind of like watching little movies. Is this a narcolepsy thing?

I'll be having my sleep study and MSLT next week. I'm terrified that for some odd reason, my body will act completely normal that day, even though I haven't been able to stay awake during the day for years, and half the time I'm dreaming before I actually get to sleep. I'm just so incredibly hopeful that this is it, because my life has been so miserable for so long,, and I haven't had any reason why.

Susan

NJMom · Joined: 05 Jan 2006 Posts: 193 Location: Northern NJ

That is so weird! How could you have cataplexy for years without getting diagnosed? Or did it just take doctors this long to figure out that those episodes you have are actually cataplexy and not a myraid of other things? I really wouldn't worry aobut being normal for the one day you go for the sleep test. It sounds like you pretty much have symptoms every day, if not every hour.
. Have you been on other meds besides Nuvigil? and whya re you on it if you have no other diagnosis?
i hope you get clear results and can find some relief.
Keep us posted and hang in there.

sleepysusan · Joined: 01 Nov 2009 Posts: 8

Thanks for answering. I know it's weird that I was only recently diagnosed. It's been a long, long road, and doctors have always blamed my fatigue and sleepiness on stress or depression. When I started getting cataplexy, about 15 years ago, I didn't even know what it was called. I remember telling people how weird it was that when I laughed, my knees would buckle and I would get weak for a second. I never hit the ground, and it was mostly just a bit annoying. On bad days I would just tell people not to make me laugh. (Which is ridiculous, because I'm a compulsive joker and I'm always laughing.)

More recently I was having issues with RLS. That's what I went to the sleep clinic for. I was put on Requip, which was totally awesome for about a week. Then I had a bad, bad reaction - it's called augmentation, but my case was extreme. It left me squirming out of my skin and in horrible pain all over my body. I knew from my visits to the RLS.org forum that the only treatment was opiods until the RLS settled back down, and other meds could be tried. So... That was when the sleep clinic doctor "referred" (dumped) me to a pain clinic, because he didn't want to deal with prescribing the opiods. He would prescribe enough for the evenings, which is when RLS is supposed to happen, but not for all day long, which is what was happening then. Those were a horrible couple of months while I waited to get in to see a pain doctor. Anyway, once I got my now painful RLS under control, I stayed with the pain clinic.

I've tried a couple other sleep doctors, but they were too freaked out by the methadone that I'm on to treat my RLS. Also, with that I developed crazy, random kicking legs and jerking muscles all over my body. I had told the doctors that I had cataplexy, but one of them just commented that well, I was on some heavy duty meds already, and come back another time. He said that I had DSPD, and that seemed about right. I can't get up in the morning, and can't go to sleep at night.

The pain doctors have been urging me to see a sleep specialist again, because in spite of the fact that my RLS is managed well, I'm still trashed all the time. One of them looked at me one day and asked me why I wasn't on Provigil. I told her because no one would give it to me. Doctors in MN seem to be total freaks about controlled substances. She prescribed the Provigil and the pain clinic has been great about prescribing it ever since. But it gives me headaches and nausea, so I've only used it when I really have something to do. The Nuvigil is much better that way.

Anyway, I finally flew halfway across the country to see a doctor who is known as the most competent RLS doctor in the US. And after telling me why my EDS is not caused by PLMs (periodic limb movements), and he didn't think that it was delayed sleep phase disorder either, he told me that I had a classic case of narcolepsy.

I always thought that people with narcolepsy were people who faceplanted in their soup at dinner time, not people who dragged through life with chronic fatigue and inability to stay awake all day. But why it took a doctor so long to figure it out, I really don't know. I've told them that I have cataplexy, and yet I've been diagnosed with stress, depression, fibro, and my thyroid hormone has been endless adjusted.

But here I am and finally have hope that maybe I'll be able to function again. Anyway, I really appreciate you answering. I'm on a crazy roller coaster ride of emotions with it all, and feeling rather alone with it.

Chammers · Joined: 15 Jan 2009 Posts: 87 Location: South Florida

The mini dreams you speak of... I have those as I fall asleep, just about every time. It's tempting to fight em off (I haven't quite figured out why) and stay in that sort of limbo state, but it's best not to, at least for me. I read somewhere that others think it's because we're trying to get more of a certain stage of sleep and less of R.E.M.

I'm rambling. I'm tired, and so glad I get a refill on provigil in two days. Looking forward to a nap this afternoon as well...

~chammers

P.S. You'll be "fine" for your sleep study. Just go in, watch T.V., take your crossword or whatever you do when you're not awake enough to be awake and not asleep enough to be asleep, and lay down when they ask you to. It's sort of a relief, actually. I wish someone would, on a day to day basis, tell me to lay down regularly like that and wake me when nap time was over.

tengosueno · Joined: 14 Oct 2009 Posts: 2

Yeah they are apart of N, I have them before I go to bed. It's like litle films playing in your mind but you are not participating. I always say I have a little man with an old crank projector showing his home movies LOL.

sleepysusan · Joined: 01 Nov 2009 Posts: 8

Thank you, again, those who have responded.

I like the image of the little man in the head with an old crank projector. With my RLS it feels like there are a bunch of little imps in my legs, who have little pulleys with ratchets pulling on my muscle fibers. It's quite a team in there.

The thing about those little dreams is that they startle me and make me wake up a little. I guess that's what worries me with the MSLT. I can go back and forth between mini-dreams and little startles for a long time. I hope the polysomnograph can pick up on those dreams before I get to sleep. Once I get to sleep, it's full-length feature movie dreams...

nogetupandgo · Joined: 05 Nov 2009 Posts: 3

Does anyone know about this? To sleepysusan, I know what you are going through. I went to several doctors, and told them I was falling asleep at a drop of a hat and also while driving. Finally, my husband went with me to my pain management doctor. She tried telling me that I was not on enough of Lyrica for my fibro. My husband looked at her and said how much does she need to be on before I have to go to the morg to identify her. He stated that he was here to tell her that I was falling asleep at the wheel while driving and no one will listen to me. He also stated that I was having some sort of seizures, where my body would jump and jerk around at night. So , she sent me to a sleep study doc, which then, he diagnosed me with narcolepsy. My question is I'm trying to get a job and maybe go back to school, but if they see I'm on a controlled substance, what are the chances to be hired? Also will the narcolepsy get worse as time goes on? Any suggestion will be deeply appreciated.

jjjaspar · Joined: 03 Sep 2008 Posts: 83

NoGetUpandGo,

Why would a school or anyone hiring you know you are on a controlled substance? Employers can't ask what medications you are on, nor even if you have illnesses or about your DNA or anything else about your personal health. You MAY want to let them know about a disability, however, if you need acommodations.

Our family member with Narcolepsy goes to school and does have acommodations for disability related reasons.

jjjaspar · Joined: 03 Sep 2008 Posts: 83

Oh, and if you do get a job requiring urine testing for ILLEGAL drugs - not to worry - yours is LEGAL. You have a prescription.

nogetupandgo · Joined: 05 Nov 2009 Posts: 3

JJJASPAR Thanks for the information. I'm really wanting to go back to school to finish up my nursing. If this narcolepsy will let me. I have been told that this may get worse and the stress aggrevate it,