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Narcolepsy- But How Severe?


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#1 KMitchell25

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Posted 04 September 2012 - 03:56 PM

I was just diagnosed with Narcolepsy, and I am excessively tired all the time. I do not however fall asleep while driving or having conversations. Can anyone tell me where my results would fall? Mild-Severe?

I fell asleep in 5/5 of my studies. 4 out of 5 I fell asleep in less than 3 minutes- one took me 6 minutes. In 4/5 of my naps, I hit REM sleep. One took me only 30 seconds, two took me 2.5 minutes, and one took me 5 minutes. The other nap I did not hit REM sleep.

What is considered severe? I'm tired to the point I can't focus my eyes- even when on medication some mornings it takes me until my 2nd dose in the afternoon to be able to see correctly (I take two doses in the morning (20 mg each of Ritalin) and one dose in the afternoon (20mg Ritalin).

I was just diagnosed about a month ago, but I have been able to sleep for 48 hours straight since I started high school 12 years ago. I had meningitis in October of last year which my doctor said could have made this worse- but if it gets any worse than it is now I'm not sure what I will do.

I'm just confused- what is normal like? What should I expect? Can it get worse as time goes on? I understand that to some degree I am always going to be tired, but to what extent is acceptable?

I just switched back to Vyvanse from the Ritalin today because it wasn't working as well as the Vyvanse was (I was prescribed Vyvanse for ADD) but now I'm just feeling terrible most all of the time. I slept away my holiday weekend which I'm pretty bummed about- I'm 25 with no kids, but we just bought a house and got a puppy, I work full time, and I started back to school (one class a semester to get rolling). I'm not sure how I'm going to finish college and have children unless I can figure this thing out!!! I don't feel like myself because I'm moody and just robotic- not fun to be around like I used to be :(

Anywho, I just don't know. This is all so new. Some days I can't even get anything done because I have a desk job and I fall asleep or just can't think straight due to being so tired. I'm currently looking for something that will keep me up and moving but haven't found anything as of yet.

Please help!

#2 Joel

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Posted 04 September 2012 - 04:23 PM

Seems fairly severe to me, but I'm new to it as well. I was just recently told that I appear to be suffering from "early-onset" narcolepsy. No cataplexy, no sleep paralysis, no hallucinations, just a lot of daytime sleepiness. I consider my symptoms to be mild to occasionally moderate (for the few that I exhibit), based on the last week or two of research I've been doing. In other words, most *diagnosed* narcoleptics seem to have it worse than I do. Based on others' descriptions, I'd say you've probably got a severe case, at least for the symptoms you exhibit.

Again, I don't know a whole lot, just what I've been soaking up for a couple weeks in the evenings on the internet, but from what I have learned, narcolepsy can go either way - worse or better. I don't know if there's likelihoods associated with that (I'd like to know if I'm at risk of becoming cataplectic, having never really had the symptoms), and the issues, as well as effective treatments, can vary considerably across individuals. Some see little or no improvement to treatment, others see it right way and dramatically, still others say it took a year or better for things to even out.

The only other interesting point I've stumbled across is that other factors can contribute to (or even be mistaken for) narcolepsy. Gluten sensitivity and celiac disease are two common topics that show up, there. I'm not sure what to think of that myself...

Anyway, others will certainly share more meaningful information than I can, but that's a quick summary of my two weeks of occasional research. Might help if you pick an item or two and do some research of your own. Don't just read WebMD articles or stuff like that, visit forums and read people's descriptions. You'll get a better feel for the scope and limits of this disease and where you really fit into the picture.

Hope it helps...

Joel

#3 Megssosleepy

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Posted 05 September 2012 - 09:17 AM

Anywho, I just don't know. This is all so new. Some days I can't even get anything done because I have a desk job and I fall asleep or just can't think straight due to being so tired. I'm currently looking for something that will keep me up and moving but haven't found anything as of yet.

Please help!


I have the same problem. My eyes kind of glaze over and I come on here to make it seem like I am being productive. Prolly why I ramble so much on here. I was in the service industry for many many years, I loved always being on my feet moving around, and the hours were perfect. Prolly the reason I was able to survive untreated for so long... But being a server doesn't come with benefits and as I get a lil older its just not the right scene for me. But, a job where I am up and moving is becoming a must!!

As far as how bad can it get... I would spend some time reading through all the different post on here, I am slowly getting through them allllll and I have learned so much, and no longer feel like such a nut case. From what I have read symptoms can become worse for about 20 years after the onset. For me I mark that at like 14/15 (although ive have SP and NN as long as I can remember) This past year (14 years after onset) making the switch into a stationary job, trying to finish my degree, and going through a crappy break up has made my symptoms 100% worse. So there are definitively changes you can make to your lifestyle to make things easier.

I think its not a matter of where you "rank" on severity its more about "how much can you handle" My heart goes out to those with debilitating catiplexy and those who do "randomly" fall asleep. It doesn't sound like you have either of those so that's a plus :wacko:

I would work closely with your Sleep Doc, and try to find the right meds (this can take a long long long time) Only time will tell if things get worse. I read some people can even go into a "remission" how cool would that be?

Good Luck, read up as much as you can it will help!

#4 KMitchell25

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Posted 05 September 2012 - 04:49 PM

Thanks guys!

I know I'm lucky that I don't have cataplexy and I am able to function enough to hold down a job- even though I'm not always very productive. Sometimes I get so tired that my body gets really heavy and it's hard to move- but I do think that is partially from not being active enough throughout the day. Hopefully we will get the meds straightened out soon- I'm back on Vyvanse right now, I think it works better for me than the Ritalin but we will have to see. I will start reading more topics on here to learn more. I guess I just want to feel normal- I always thought I was a nut because I have been tired like this for so long- before the sleep study I had had so many tests done and ruled out practically every other potential cause... So, I'm glad to know what it is that is causing my sleepiness and I'm prepared to make any changes necessary to get as close to 100% as possible! If this can go into remission that would just be totally awesome. My husband and I are coming up on 4 years of marriage and want to start a family in the next couple of years, but not until I get these symptoms under control.

You may say I'm a dreamer, but I'm not the only one!! (is it totally crazy that when I got my results that song was playing in the back of my mind? LOL)

#5 corey91386

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Posted 11 October 2012 - 08:42 AM

My doctor told me that narcolepsy is comparable to ms. In the sense that some people you would never know they had it, and some people are crippled from it. My first sleep doctor told me I had it moderate to severe. My 2nd doctor at the Cleveland clinic said there's no way of telling how bad you have it without tapping your spine to see how much orexin is gone. Everyone's body is different, and I think alot of it is coping with n.