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New Diagnosis - So Many Questions

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#1 Lang1725



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Posted 07 August 2012 - 12:20 PM

I'll try to keep this fairly brief, but I can provide additional info if people have questions. I've been trying to read through the other posts to figure some of this out, but there are so many.

I started having a very Dr. House-like "mystery illness" when I was about 21. (I'm 33 now.) I went to a million doctors and they all basically said that I had anxiety disorder. At first I was in denial, because everything felt so physical, but I've come to accept that I do have some form of the disorder, be it generalized or panic or whatever. I've been treated with almost every antidepressant ever made. Some of them work, some of them don't. Some of them work for awhile and then stop working. Right now I'm on Cymbalta and have an appointment with a therapist tomorrow because it's really not doing its job.

I have always felt that I dream too much. For almost my entire life, I feel like I start to dream the moment I fall asleep (sometimes before I'm even fully asleep) and I'm still dreaming when I wake up. Always. Every time my alarm goes off, it interrupts a dream. I'm also always tired and can sleep for 12, 14, 16 hours straight without ever waking up feeling refreshed. None of my doctors ever asked about my sleeping habits until I posted something online about dreaming too much and someone mentioned narcolepsy. I went to a sleep doc yesterday and he said that he is absolutely positive that's what I have. My sleep study and MSLT are scheduled for next week. But I have so many questions.

1) Are you allowed to take some kind of sleeping pill before the sleep study? I've read different things on different sites. (I plan on calling the center to confirm later in the week.) I am always tired and always feel like I could fall asleep (I have never suffered from a "sleep attack"), but I do have problems falling asleep in strange places. For example, I have trouble sleeping when it's completely silent. I prefer having a fan running in the background. Is that something they'll let me do during the test? (My iPad actually has a "fan sound app" for that very purpose so I guess I'm not the only one.)

2) I guess this is more of a concern than a question, but I really don't feel like I'm going to be able to nap during the MSLT. Again because it's a strange environment. But does that mean that I don't have narcolepsy? I'm just picturing them saying, "Ok, try to nap" and I'll just lay there uncomfortable for 20 minutes. If the test were being performed in my home, it would not be a problem.

3) I'm kind of confused about what cataplexy is. Two of the main things that happen to me during a panic attack (or what I've always been told was a panic attack) is that my legs become very weak and will sometimes buckle and I'll fall, and my neck feels like it isn't strong enough to hold up my head. Although, as far I as I can remember, my head has never actually dropped. I may drop it voluntarily to take some of the strain off. And these are reactions to emotional situations, like when I'm startled or when I get upset. (I have a vomiting phobia, so if I feel like I'm going to throw up, I will have these kinds of physical responses). But is that really cataplexy? Or is that part of my anxiety disorder?

I guess the meeting with the therapist and the sleep study results will give me more definitive answers, but I was just wondering if anyone had a story similar to mine.


#2 smg08009



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Posted 07 August 2012 - 09:03 PM

Hey Lang1725! I was diagnosed last week...and had pretty much all the same questions as you even after the MSLT. I promise I'll post a much more in depth reply tomorrow (I have an A&P exam in the AM) I just wanted to say hi and let you know you're not the only emetophobic here!!! I've been terrified of throwing up since I was ten, and I've met someone else on here who has it too!

#3 Hank



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Posted 08 August 2012 - 11:07 AM

I have recently gone through 2 rounds of this and had similar questions and concerns. It will be important for your Dr. fo know if any of your meds disrupt "sleep architecture". What happens when you sleep is very important in a diagnosis- not just how much you sleep. Cataplexy varies from person to person and I read extensively to help me identify it. I suggest saying what you experience physically rather than calling it a name. Let the docs decide what it is. If your doc is not a sleep specialist, consider asking for your tests to be reviewed by one- they are best qualified since this is uncommon. I wish you the best in finding your answer.

#4 Megssosleepy



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Posted 08 August 2012 - 11:57 AM

A couple of things I can answer... but you should remember we are all different...

No sleeping pills
Yes they will provide white noise
I thought I wouldnt be able to sleep... but got the 7 hours needed to take the naps, when I napped I fell asleep in less then 53 seconds each time... the room will be dark and whatever temp you prefer... the wires and nose piece are really annoying tho, I found the very fact they kept waking me up when I fell asleep is why it was so easy to sleep all 5 times

What you describe as cataplexy is what happens to me... my legs sort of forget how to work, like is someone scares me my knees with just give out, but everyone is different some people completely pass out, some sort of spazz out when they do.

There is also something called REM disorder... that may be something to look into

The main symptom that everyone that has N has is Excessive daytime sleepyness... and then normally one or more of the other symptoms.

Good Luck, and let us know how it goes!

#5 Lang1725



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Posted 08 August 2012 - 12:04 PM

Thanks for the replies!

I am seeing a sleep specialist and he was the one who used the word "cataplexy." He basically asked me a series of questions, one being if I ever experienced weak muscles in response to strong emotions. As I said, I was always under the impression that those symptoms were in response to anxiety, and they well may be, but now I realize they could also be caused by the narcolepsy. It may be a chicken and egg kind of thing. Because I've fallen before, I feel my knees get weak and then panic. Or vice versa. I'm in an uncomfortable situation, and the strong emotions trigger the cataplexy.

I saw a neurologist about a year ago, because I thought there might be something wrong with my gait since I experience "jelly legs" often, but he said everything was fine. (He did not even mention the possibility of narcolepsy. I'm shocked that after 12 years and dozens of doctors, no one ever asked about my sleeping habits.)

My sleep doc did also diagnose me with REM Behavior Disorder, thanks to my boyfriend. We've been living together for 2 years and I never knew it before, but apparently I'm quite the active little sleeper. I talk, wiggle my fingers, kick my legs. And he said that he can see my eyes moving back and forth under my eyelids. I told him that's what REM sleep is and asked how often I did it and he told me it's pretty much all night, non stop.

#6 Brianne



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Posted 12 August 2012 - 04:45 PM

Wow. I honestly feel as though I wrote your original post. Maybe I did while I was sleeping! (Just kidding.) Your symptoms/concerns/questions are exactly what I was coming on here to ask. I saw a sleep specialist yesterday after 11 years of debilitating sleepiness. I'm 21 now. I was diagnosed with both depression and anxiety/panic disorder at age 12 and I've always blamed my fatigue on that. (My panic disorder was caused by my vomiting phobia, too!) He's really concerned about my sleep patterns, and is sure I have narcolepsy. I have a sleep study scheduled for a few weeks from now.

Like you, I'm so nervous I won't be able to sleep! Right now, I'm sleeping on average 8-10 hours a night and dozing off at least once an hour at work during the day. It'd be awful to walk into there, sleep a solid 8 hours, wake up feeling refreshed (which has never happened before) and not be able to nap during the day at all, just because I'll feel like I'm under pressure. I'm also sort of afraid of the dark, and hate when the room is too silent when I'm sleeping as well.

I too have VERY vivid dreams, but I have this recurring nightmare that I'm "trapped" in - for several minutes I know I'm dreaming, but cannot wake myself up . It's a terrifying experience and I'm wondering if that could have something to do with it.

The cataplexy you described sounds just like mine; I've only noticed it a few times over the past few months. It's almost the same as when you stand up too fast and get lightheaded, but it'll happen randomly while I'm already standing up. My legs get weak, my knees buckle, and I feel dizzy for a few seconds/minute, and then it passes. I haven't noticed if it correlates to feelings of extreme emotion.

I guess I have no real advice for you, but know there's someone who feels the same way. I'm actually going to be discouraged if I don't get the diagnosis, because then we're back to square one, and this is taking a toll on my sanity. Probably like most people on here, I'm getting sick of this:

"Everyone's tired all the time"

"You just need to sleep more"

"Start eating right and exercising more"

OKAY woah, sorry this was so long. Hope everything works out for you!

#7 Lang1725



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Posted 14 August 2012 - 04:48 PM

Well my sleep study is tomorrow night followed by the MSLT on Thursday. I'll let everyone know how it goes. I am SO not looking forward to it, but it's necessary.