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Doctors Suspect Narcolepsy


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#1 Iamawake

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Posted 15 December 2009 - 06:45 PM

Hi, I am new here and wanted to say hello.

This forum was recommended to me because I had an overnight test that showed I go into rem sleep in 30 sec.
Currently I'm waiting for an MSLT, and the waiting is killing me.

I have had issues with sleep at least since early teens.
Missed a number of important things in the life of friends and family, not to mention my problems with schedule, resulting in career and personal problems.
I have been from doctor to doctor but they usually want to pin this on depression and solve it with ssri drugs, which give me side effects but no solution. I don't think I am depressed, at least no more than normal but 20 years of not being able to manage my life properly has taken it's toll.

I have noticed that when I try to stick to waking up at the same time, around 7 am, I start to get tired at 1 pm and red eyed at 5 pm. Between 1 and 5 am is the time want to monitor.
I am not sure how microsleep works in practice, that what symptoms I should look for, because I am used to being tired and stressed all the time and for me that is a normal condition.
Mood disorders are common although I rarely have the energy for confrontation so I tend to avoid them, to tired. My will seems to have left and I have ADHD sympoms probably from lack of rest.

My fear is that the MSLT will show nothing and i will be back at the beginning as to finding an answer to my EDS and how to cope with it and getting a life.

I got up at 7am, slept for several hours today, and now I am sleepy. The line between dreaming and reality is confusing. This is quite frustrating, to say the least.

For those that have read, Thank you, please comment if you have any thoughts.

#2 merrymom1013

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Posted 16 December 2009 - 08:22 AM

When is the MSLT?
Are you currently on SSRI's & if so, is the doctor recommending you taper off of them before the next sleep study?
They can interfere with the results.
Hang in there & good luck!

#3 Iamawake

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Posted 16 December 2009 - 10:30 AM

They were going to try to get me in before Christmas.
No I am not taking any ssri, they don't seem to do me any good.

#4 sleepybee

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Posted 16 December 2009 - 11:20 AM

Hi there:

I went through this myself so I know how you are feeling. I too could sleep all night, get up for a few hours, and then want to sleep again in the afternoon. I built my life around sleep. I scheduled my days around when I could next take a nap.

If you have a overnight study showing you went into REM really fast, congratulations. That's a huge thing to have documented and it will help the docs working with you.

For the MSLT--bring a book or stuff to do because there's a lot of waiting in between each "nap" session. For me, boredom is a huge trigger for sleep and you don't want to fall asleep when they're not recording anything. Check and see if you should bring lunch or snacks because there may not be any food/drinks nearby, and you may not want to go outside with your head all wired up like that.

You will have 4-5 scheduled "nap" sessions. They'll have you lie down and try to fall asleep. Don't worry if it feels like you didn't fall asleep at all, or if your mind keeps working or you get distracted by outside noises. (My MSLT was run by giggly college students and I actually had to get up and go get them when it was time for my last nap, as they were nowhere to be found). I thought for sure my test was a bust because I remembered being awake through all 5 naps. Even if you feel like you're not falling asleep, remember that they're looking for very tiny changes in the brain that you may not be aware of (and you may NEVER have been aware of them, especially microsleeps).

I would swear on whatever you choose that I never fell asleep during my MSLT, because I remember everything, what I was thinking about, sounds, etc. But the recordings of my brain said different--I fell asleep every single time. And that shocked me because, if I thought I was awake, and the recordings said my brain was asleep, then what the HECK was happening to me at other times when I thought I was awake?

There are lots of things they can do and treatments for you to help, no matter what. Even if this test shows normal, there are other tests they might try and things they can do. It's nerve racking to wait around when you want answers NOW, but if they want to get you in before Christmas, they will and you will know soon.

One thing you can do to pass the time: create a timeline of your life and your sleep issues. If a lot of docs have been tempted to connect this with depression, come up with comparisons that show your mood at specific times. Example: In this month/year, I was going to school/working part time/etc. I kept missing class/getting to work late/falling asleep during tests. BUT, make sure you include good things that were happening, things you enjoyed doing or were looking forward to doing, friends, etc, because that will help the docs get a fuller picture of your life.

Yes, narcolepsy and other sleep disorders can be linked to mood disorders (myself included), but there is a difference between someone who wants to do things, but feels they have to sleep instead (or sleep prevents them from doing it), and someone who has lost interest and doesn't want to do things or see people, and sleeps instead. Both can be severe problems and both can be treated, but in different ways. My example is extremely basic and I am not implying that everyone should be able to differentiate between them like this.

Good luck. This website is a good resource and there are lots of folks here just like you, dealing with the same things. There are other good links and resources you can find here as well. Keep us posted!

#5 Iamawake

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Posted 16 December 2009 - 06:17 PM

Thanks for replying.

I have actually been doing a timeline of my life, funny you should mention it.
Maybe it is normal, I guess it makes sense that you reflect on your life with emphases on sleep and how it has effected you in the past.
For me I have had plenty of reasons to be depressed or anxious in the past, but that I can deal with, either time heals or actions. Sleep and being tired I can not deal with anymore, I feel my body getting affected in so many different ways, from not getting enough rest.

Sleep is a direct cause for many of my problems.

Also I am trying to keep a sleep diary, so I can better understand my symptoms. That keeps me busy, that and reading biochemistry to better understand what is going on. I realize that I know very little but at least I am doing something. I think I dont realize half of my symptoms because it has become normal for me.
I am avoiding medication of any kind until after the test, when I get the results I can attack this on a more specific level, and channel my frustration on attacking the problem.

Possibly I will meet more doctors that will want to blame this on depression or lack of will power/laziness, so I need to educate myself so I can figure out the ones that know what they are talking about from the ones that just talk about.

From time to time, I sleep trough the alarm clock. I don't know what triggers that and I this really affects my life, in terms of keeping a schedule and other.
Do any of you do that or do you know why or how to prevent that?

Is it possible to be cataleptic and not realizing it?