Opinion Anyone?

[Courtney]

Hello everybody! Well I know there are many blogs from people telling there story and wanting to know what people think about it. Im afraid this is no exception. I am scheduled for a sleep test but since its weeks away and Im just starting to learn about some of these sleep disorders I wanted to see if any of what I say sounds familiar to someone reading.

Ive never been really full of energy or a morning person. Ive always had people pick on me b/c I could sleep really long and heavy and take naps almost whenever. But the past few months I slowly started noticing how tired I was all the time and how bad I was feeling. It came to a point where I assumed I was depressed b/c I felt bad, napped a lot, and generally stopped being excited or interested in much except sitting around. But Ive been down the depression road before and Ive concluded that I am definitely not. In fact, this is one of the happier times in my life. I got my thyroid checked (which was fine) and that dr. suggested I may have sleep apnea b/c I snore and my tounge is large for my throat. While genetically this is very likely, Im not your typical sleep apnea patient as everyone keeps telling me (mid-20's, female, not overweight). The specialist seems to think its possible Im narcolepti. At first I thought thiswas insane. But reading more about it Im starting to wonder.

My sleep issues are as following: I dream very vividly and have a lot of nightmares and bad dreams in general. That's my number one complaint b/c I feel like that's why I don't ever feel rested even on weekends when I can sleep in. Gotten really bad in the past few months. I can go straight into a dream and often have a recurring nightmare abotu falling down steps and I can feel it. When I wake up I think its the middle of the night and its 10-15 minutes later. I have had sleep paralysis atleast 1 time a year or more and have for years. Im sleepy during the day no matter how long I sleep. My eyes will burn and my head will hurt like when you've only slept for a couple of hours. Doing things at work that used to not be taxing is now. Same with cleaning and errands. I used to be very articulate and now I talk in circles and forget what Im saying sometimes (totally embarassing to me). I nap atleast once after work and can nap more on the weekends, even up to 3 times. I have been told I talk in my sleep sometimes clear, sometimes gibberish. I have been known to sleepwalk since I was a child and sometimes do things in my sleep like go in other rooms and take things out of the drawers. I do not fall asleep during the day at work (as much as Id like to), never fallen asleep while driving, and Im not even sure what cataplexy is exactly.

I would appreciate any and all opinions and stories. I didn't know anything at all about narcolepsy until a few days ago and Ive been so surprised to find I identify with so much of it. Not just in the past few months, but most of my life. Thanks for reading, sorry it was so long!

[ctrled_nrg]

Thats an interesting story, especially about the dreams. Hopefully after your sleep study you will have even more information and can take it from there. Good luck.

[hiitsmed]

Hi, Courtney-
Good girl for looking into sleep disorder! I'm 40. My general practitioner wanted to find out what was making me so exhausted - rare to find a doctor who wants to find out what's wrong with/ you. Most doctors just gave me that blank or disgusted look & prescribed an anti-depressant. They made me worse - sleeping 17 + hours a day. My doctor wanted me to go for a sleep study. I did some research because a friend of mine encouraged me to go to a teaching hospital because they're on the cutting edge of information and the doctors at these hospitals (like Duke) are detectives. They are not your average doctor - they want to solve your mystery. My doctor was very supportive of my decision to go to Wake Forest's sleep center - she said 'they'll have the latest technology there to be able to diagnose exactly what's going on'. Made appointment, they sent me a 55 question questionnaire, saw the neurologist for over an hour, went back for a sleep study overnight & a MLST (nap test during day). No apnea. It's narcolepsy. I have narcolepsy with NO cataplexy, hypnogogic hallucinations or any kind of paralysis. I would highly recommend seeking out a teaching hospital. I have to drive 2 1/2 hrs to see this doctor, but it's worth it if I'm going to be diagnosed correctly. So I'm waiting for meds - uninsured & getting help from pharmaceutical company. Go to the best - get a neurologist who specializes in sleep disorders. Let me know what happens or if you have any questions feel free to ask.

[jessie]

Hiya, I'm not a doctor, so don't take anything here as definite, it is just my mother's and my own experiences.

I was diagnosed this year with narcolepsy and at the same time my mum was, strangely enough, diagnosed with sleep apnoea. Although we appeared pretty similar - tired, often napping etc when you read up about both, you can often get a good feeling if you have one or other. The main difference we have found is that I wake up in the morning feeling refreshed, but she wakes up as tired as if she hadn't been to sleep. I know some narcolepts find it very hard to get out of bed in the mornings, so there isn't an exact definition of anything, but I have heard a few doctors making this distinction during my diagnoses. Also, after a quick nap I can feel brand new, whereas my mum doesn't. For me, sometimes I need an hour, sometimes 20 mins, 5 mins or even just a few seconds can be enough for me. We have me on video, my eyelids drooping while trying to type on the computer and then falling asleep for about 6 seconds and then I'm totally alert! No idea how it works, but it does for me. My mum never experiences this. Even after an hour or two she still feels tired.

I found when my doctor first mentioned narcolepsy as a possibility I didn't think I had any symptoms apart from excessive daytime sleepiness. However, as I read about the typical symptoms, I realised I did have them, I just always thought they were normal, or just odd things I experienced every now and then. It may be worth reading a lot of things, to see if anything jumps out at you.

Before my doc will do a sleep study for narcolepsy, he checks for sleep apnoea as a matter of course. He said this was easier to eliminate and so they always did this anyway. Good luck getting yourself checked out - it will be so nice for you to eventually know what it is that is causing your problems!

[Courtney]

Hi, its Courtney -
I did my sleep study and its not narcolepsy. Its definitely sleep apnea. I stopped breathing almost 50 times in 6 hours and I woke up about 150 times. That's every other minute I am waking up in a night! So, now I know what it is and Im going to figure out how all I can deal with it so I can finally get a good night's sleep. I will probably head down the surgery route sometime in the near future since Im still only in my 20's.
Thanks to everyone who read my story and responded. I really appreciate it. Good luck to you all!

[REMagain]

[REMagain]

[Courtney]

Not trying to sound dumb or anything but what is an MSLT?

[Muse]

A MSLT is a multiple sleep latency test. In short, you take three to four naps scattered over an afternoon while at the sleep lab. With the use of electrodes hooked up to your head and face (completely painless, by the way, they just stick little discs attached to wires on you), the sleep docs there will measure how fast it takes you to fall asleep and whether you enter REM as well as how quickly you enter REM upon falling asleep.

It gets more detailed then that. If you want good info and some anecdotal stories, hit up google and search either MSLT or multiple sleep latency test.

I do believe this is the test that is used to 'officially' determine if a person has narcolepsy.

[Courtney]

Oh, ok. I had one of those tests scheduled. However, after I did the sleep apnea test, my doctor cancelled my narcolepsy test. He was confident that SA was my problem. And I think he was as surprised as anyone b/c I got the feeling that he believed it was narcolepsy when I had my initial consultation, even though I told him I was genetically prone to SA. I just didn't fit the type for your typical SA patient.