3 replies to this topic

[nursechubb]

Hello, just reading up on all this stuff and wanted to write my own "blog" of sorts. I have been suffering from EDS for a few years now. I have always been a long sleeper, at least 12+ hours a night as a teen, now I am 28 and going for a sleep study on Thursday. I have been to the MD every year for the past 4-5 saying that I am so tired all of the time. They check a thyroid level and when it comes back fine i am sent home saying "You have 3 kids and work full time, you have alot on your plate." This year I changed doctors, again...and after my hubby begging I went in to complain of the tiredness, was stuck for several lab tests, and besides my iron level being slightly low, they were norm again. So she had me seen by a sleep specialist. Thanks goodness, until recently I just thought that everything I was experiencing was normal, and that all mothers, workers, whatever just felt like this all of the time.

I havent knodded off at the wheel since I was in college a few yrs ago, and doing shift work. I just thought that was norm, since I was tired. It has just gotten so much more burdensome as the years go by. It just cant be the kids and job. I am a nurse, but have an office job, and the kids yes are young, but I just refuse to believe that it is something I cant change that is making me feel this way. Does every parent, worker feel like this?

I am so worried about the sleep study, i do the overnight one then the MSLT. what if i cant nap each time, what if...what if...what if...then I will just be told again it is my lifestyle, even though I sleep at least 9-10 hours on the weeknights and up to 12 on weekends.

Thanks for listening to me blather. Just want to feel like it is not all in my head, and that if I could do something about the way I feel, I would. Now I need help to feel normal, alert, like i can remember anything.

[mariasol]

I understand how you feel. Being new to the diagnosis has caused a lot of conflicting feelings, but it's ok, it REALLY isn't just in your head. I have the same thoughts and second guess myself, but you just have to remind yourself that in the end everything will work out ok. Hope your test went well.

[nursechubb]

my test was thurs night and friday day. I asked the tech after my 5th nap, what was my latency. and she said well, that was the only one you actually went into deep sleep in, the others were just micro sleeps.

so i cried all the way home, it feels like i am going nuts or something. my body is so physically tired that i cant function mentally or physically, but i only slept for one nap?

and why did they even have me take the 5th nap if i only had "micro sleeps" in the other 4.

I have a follow up with sleep MD thurs, so we will see.

[judycasper]

Nursechubb,

Please don't focus on what the tech told you! The tech isn't a medical doctor and gave you only one piece of the puzzle. Sleep doctors/neurologists must take many things into consideration when diagnosing narcolepsy. I just looked up the MSLT test in one of my narcolepsy books after reading your post and the author says that only about 50% of people with narcolepsy have REM sleep during the first MSLT. I'm not sure how accurate that fact is, but I think it is worth researching. Maybe others reading this can suggest websites or studies to give you more information.

Also, you DO NOT need to have deep sleep or REM sleep during all five naps for the neurologist to determine that you have narcolepsy!! As I mentioned before, many things are taken into consideration, even during the test, such as how long did it take you to fall asleep on average during your naps. When I was diagnosed in Nov. 2006 my neurologist (one of the best in my area) said he was as certain as he could be that I have narcolepsy, even though he said that I only went into deep sleep/REM sleep during one of the naps. Actually, I know I went into REM sleep during at least three of the naps because I clearly remember the neurologist being in a different dream during each of those three naps! The neurologist had already told me that I had narcolopsy before I told him about the three dreams -- he only needed one deep-sleep nap to make his diagnosis (along with other factors, of course.) He did say that sometimes the equipment can't pick up all of the REM sleep, so it wasn't like he was questioning whether or not I had dreams during three of the naps...

Try not to stress too much before your appt. with your. Maybe doing a little bit of research on reading MSLT tests on the Internet will help ease your fears... And bring the info. to your appt. with you, if you think it will give you more confidence when talking to your doctor about your test results!!

Hang in there!