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#1 chemicalspider

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Posted 16 July 2009 - 04:32 PM

Hello All,
I just joined the site. Recently I had a sleep study done because I suspected I had sleep apnea. A week ago the results came back that I don't have sleep apnea, but the sleep specialist suspects that I have Narcolepsy (I suppose you guys generally abbreviate this with just "N"). The sleep center immediately called me to schedule another polysomnogram with an MSLT immediately after (the first PSG didn't have a MSLT). Unfortunately their earliest appointment available was Sept. 15/16, which means I would have to wait two whole months. Luckily, today, I called and they had a cancellation in late August (the 25/26), which is still a ways away, but its sooner.

I still havent spoken with the doctor, though. My GP (who is very helpful, just not a sleep specialist) referred me to the sleep center, but I've only spoken to the secretaries to schedule appointments and the sleep technician, who isn't allowed to discuss results. So in the past week I've been tearing my hair out from anxiety and reading everything I could on the internet to try to learn everything I could and really see if the diagnosis matches --- which is how I found these forums, and how fantastic they have been! I'm glad I found a place to vent. My friends are mostly understanding (I think they want to be supportive they just don't know how to react), but my gf continues to think that I'm just faking it.

Right now I just want to get a firm diagnosis of -something- so I can start some sort of treatment, which is why the wait for the tests are so aggravating --- although I understand the sleep center is just busy and beyond anyone's control at this point.

Anyway, after reading everything I could get my hands on (and I have access to a university's medical library, so that's a lot) I'm fairly certain that N is the correct diagnosis. I've had attacks since HS (I'm 26 now) where most of my muscles go limp momentarily, but I can keep from falling over by concentrating on clenching my muscles so I just end up staring blankly with a dumb look and maybe if I'm walking I can continue to walk, but with a funny limp. Then after a moment its gone and I'm fine without any problem. It usually happens with some kind of emotional excitement, usually when I've been anxious about something and it has been building for a while, and then suddenly released (e.g. the long wait in the doctor's office, then the nurse comes in to call your name). I never really thought it was connected with my sleepiness so I never mentioned it, but now that I started reading about N and C it seems like that's what it is.

One problem, though, is that on the questionnaire I filled out for the sleep center there was a question that said "Do you ever have a loss of muscle tone caused by change in emotion" or something like that. I thought "muscle tone" literally meant like muscles, so I interpreted the question to be about sudden weight loss or like decrease in muscle because of depression or something and I checked the "no" box. So the doctor put "possible Narcolepsy w/o Cataplexy" on the PSG report that came in the mail the other day. If the question said had something like, "sudden muscle weakness or loss of muscle control in response to emotion" I definitely would have checked yes. Anyway, that's another reason that I'm pretty anxious to talk to a sleep specialist --- to get that sorted out.

Ok, that's probably enough of me rambling all over the place. Now that I think about it, I'll call the sleep center and ask if I can get that note sent along to the specialist.

Thanks for listening to me!
-steve

#2 malachi777

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Posted 16 July 2009 - 06:42 PM

Hello All,
I just joined the site. Recently I had a sleep study done because I suspected I had sleep apnea. A week ago the results came back that I don't have sleep apnea, but the sleep specialist suspects that I have Narcolepsy (I suppose you guys generally abbreviate this with just "N"). The sleep center immediately called me to schedule another polysomnogram with an MSLT immediately after (the first PSG didn't have a MSLT). Unfortunately their earliest appointment available was Sept. 15/16, which means I would have to wait two whole months. Luckily, today, I called and they had a cancellation in late August (the 25/26), which is still a ways away, but its sooner.

I still havent spoken with the doctor, though. My GP (who is very helpful, just not a sleep specialist) referred me to the sleep center, but I've only spoken to the secretaries to schedule appointments and the sleep technician, who isn't allowed to discuss results. So in the past week I've been tearing my hair out from anxiety and reading everything I could on the internet to try to learn everything I could and really see if the diagnosis matches --- which is how I found these forums, and how fantastic they have been! I'm glad I found a place to vent. My friends are mostly understanding (I think they want to be supportive they just don't know how to react), but my gf continues to think that I'm just faking it.

Right now I just want to get a firm diagnosis of -something- so I can start some sort of treatment, which is why the wait for the tests are so aggravating --- although I understand the sleep center is just busy and beyond anyone's control at this point.

Anyway, after reading everything I could get my hands on (and I have access to a university's medical library, so that's a lot) I'm fairly certain that N is the correct diagnosis. I've had attacks since HS (I'm 26 now) where most of my muscles go limp momentarily, but I can keep from falling over by concentrating on clenching my muscles so I just end up staring blankly with a dumb look and maybe if I'm walking I can continue to walk, but with a funny limp. Then after a moment its gone and I'm fine without any problem. It usually happens with some kind of emotional excitement, usually when I've been anxious about something and it has been building for a while, and then suddenly released (e.g. the long wait in the doctor's office, then the nurse comes in to call your name). I never really thought it was connected with my sleepiness so I never mentioned it, but now that I started reading about N and C it seems like that's what it is.

One problem, though, is that on the questionnaire I filled out for the sleep center there was a question that said "Do you ever have a loss of muscle tone caused by change in emotion" or something like that. I thought "muscle tone" literally meant like muscles, so I interpreted the question to be about sudden weight loss or like decrease in muscle because of depression or something and I checked the "no" box. So the doctor put "possible Narcolepsy w/o Cataplexy" on the PSG report that came in the mail the other day. If the question said had something like, "sudden muscle weakness or loss of muscle control in response to emotion" I definitely would have checked yes. Anyway, that's another reason that I'm pretty anxious to talk to a sleep specialist --- to get that sorted out.

Ok, that's probably enough of me rambling all over the place. Now that I think about it, I'll call the sleep center and ask if I can get that note sent along to the specialist.

Thanks for listening to me!
-steve


Lets just hope that it is something less serious than narcolepsy. When I say narcolepsy is serious, I really mean that it so drastically interferes with our lives. If it is, there are medications to help but they will not completely stop the symptoms. You will need to find time to crash(sleep in) a couple days a week too.. As long as you do not have heart issues like me, the meds may help you some. Good luck!

#3 Saraiah

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Posted 16 July 2009 - 11:22 PM

Hello All,
I just joined the site. Recently I had a sleep study done because I suspected I had sleep apnea. A week ago the results came back that I don't have sleep apnea, but the sleep specialist suspects that I have Narcolepsy (I suppose you guys generally abbreviate this with just "N"). The sleep center immediately called me to schedule another polysomnogram with an MSLT immediately after (the first PSG didn't have a MSLT). Unfortunately their earliest appointment available was Sept. 15/16, which means I would have to wait two whole months. Luckily, today, I called and they had a cancellation in late August (the 25/26), which is still a ways away, but its sooner.

I still havent spoken with the doctor, though. My GP (who is very helpful, just not a sleep specialist) referred me to the sleep center, but I've only spoken to the secretaries to schedule appointments and the sleep technician, who isn't allowed to discuss results. So in the past week I've been tearing my hair out from anxiety and reading everything I could on the internet to try to learn everything I could and really see if the diagnosis matches --- which is how I found these forums, and how fantastic they have been! I'm glad I found a place to vent. My friends are mostly understanding (I think they want to be supportive they just don't know how to react), but my gf continues to think that I'm just faking it.

Right now I just want to get a firm diagnosis of -something- so I can start some sort of treatment, which is why the wait for the tests are so aggravating --- although I understand the sleep center is just busy and beyond anyone's control at this point.

Anyway, after reading everything I could get my hands on (and I have access to a university's medical library, so that's a lot) I'm fairly certain that N is the correct diagnosis. I've had attacks since HS (I'm 26 now) where most of my muscles go limp momentarily, but I can keep from falling over by concentrating on clenching my muscles so I just end up staring blankly with a dumb look and maybe if I'm walking I can continue to walk, but with a funny limp. Then after a moment its gone and I'm fine without any problem. It usually happens with some kind of emotional excitement, usually when I've been anxious about something and it has been building for a while, and then suddenly released (e.g. the long wait in the doctor's office, then the nurse comes in to call your name). I never really thought it was connected with my sleepiness so I never mentioned it, but now that I started reading about N and C it seems like that's what it is.

One problem, though, is that on the questionnaire I filled out for the sleep center there was a question that said "Do you ever have a loss of muscle tone caused by change in emotion" or something like that. I thought "muscle tone" literally meant like muscles, so I interpreted the question to be about sudden weight loss or like decrease in muscle because of depression or something and I checked the "no" box. So the doctor put "possible Narcolepsy w/o Cataplexy" on the PSG report that came in the mail the other day. If the question said had something like, "sudden muscle weakness or loss of muscle control in response to emotion" I definitely would have checked yes. Anyway, that's another reason that I'm pretty anxious to talk to a sleep specialist --- to get that sorted out.

Ok, that's probably enough of me rambling all over the place. Now that I think about it, I'll call the sleep center and ask if I can get that note sent along to the specialist.

Thanks for listening to me!
-steve



Hi Steve,

Just like you, I spent all day today in the closest University library, trying to figure out what it means to have narcolepsy. I was diagnosed with narcolepsy 10 days ago. Here's my caveat: I AM NOT A MEDICAL PROFESSIONAL. I don't know how well this suggestion might work, if at all. But the test for narcolepsy, as you know, is to see how quickly you fall asleep when given an opportunity to nap, AND if you go into REM (dreams) stage sleep during any of those naps. It can of course be extremely tricky to know subjectively whether one has fallen asleep or not, or whether one has dreamed. But here's an experiment to try (completely off the top of my head):

On a Friday, get to bed at a normal time for you. Then on Saturday, get up by 8am or so. Then at 10am on Saturday morning, try laying down for a nap. Set your alarm to go off at say 10:20am. Then when you get up with the alarm at 10:20am, quickly check your subjective perception of 1) whether you fell asleep at all, and 2) whether you dreamed if you did sleep. Repeat the whole exercise at noon, 2pm, and 4pm.

I have no idea whether there's been any research matching subjective perception of sleep or dreaming to the objective measurements taken in a sleep lab. My own personal experience (with a sleep tech possessing no qualms about telling me what he was seeing in each nap) was that I could always tell that I had slept, and I could always tell when I had dreamt. (Of course, now that I think of it, I slept and dreamt during each nap, and so have no idea if I'd provide a veridical subjective report of neither sleeping nor dreaming.)

I believe that the criteria for diagnosis of narcolepsy is falling asleep within a specified period of time during at least 2 of the 4 naps, and having REM sleep onset very quickly after sleep onset during at least 2 of the naps. So, if your subjective perception is that you sleep at least twice, and dream at least twice, you might feel more assured that narcolepsy will be diagnosed (??). Again, I am NOT A MEDICAL PROFESSIONAL, and all of the above is just a layperson's speculation.

One thing that I can tell you for sure is that a large number of the books and articles I've read in the past 10 days have said that one effective way of increasing alertness for narcoleptics is to take one or more 20 minute naps each day. Caffeine was also cited as being helpful in moderation, but I'm sure you've already figured that out.

Good luck, and let us know what happens with your sleep study when it finally occurs!

Saraiah

#4 greatbig47

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Posted 17 July 2009 - 07:09 AM

Thanks for sharing your situation! All of us can relate in one or many ways.

PLEASE consider this...

The person you will be after the diagnosis is the same great person you are now. The diagnosis will open up some possibilities to medications that will help your symptoms, but having a doctor say, "Yep, Your Narco!" doesn't change you.

You'll still be able to do great things, and with the symptoms closer to being controlled you may find life more rewarding. It's not something that puts our lives on a shelf, unless we let it. Having N does NOT mean life gets put on hold, it just means we have different challenges than most people.

We're here for you.

-Stu

#5 chemicalspider

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Posted 17 July 2009 - 04:02 PM

No new info to report, but I just wanted to say thanks to everyone who responded. Whatever the final diagnosis is, you guys have been a great help. The community here is great, and I've learned a lot by reading things in the forums.

Thanks a ton! :)
-steve

#6 Mike M

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Posted 17 July 2009 - 04:58 PM

Steve,

You are welcome. I want to echo Stu's point to all of us because it is vital to remember. Narcolepsy certainly can provide limits and problems, but it is not who we are. Steve, as Malachi said, I too hope it is NOT narcolepsy, but I also know that frustration and anxiety with the "wait." If when all is said and done, your sleep study says "not narcolepsy," I hope you will come and vent here still. And, if it does say, "narcolepsy," that you will come and vent. While that might sound ridiculous, I know in my own medical journey that I had a handful of times when I had "found it," but the diagnosis never happened. I would be distraught because I simply wanted to know what was wrong with me. Unfortunately, our brains and bodies are still far too complex to have even a decent understanding of how they work. Please keep us posted about your PSG and MSLT. In the end I sincerely hope that you get answers so you are able to live life more fully. Although narcolepsy limits far more than I could have ever imagined, I am positive that my life is far more rich because I am more conscious of the choices that I make and of the glory of each daily moment. Good luck!

#7 malachi777

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Posted 19 July 2009 - 03:00 PM

Steve,

You are welcome. I want to echo Stu's point to all of us because it is vital to remember. Narcolepsy certainly can provide limits and problems, but it is not who we are. Steve, as Malachi said, I too hope it is NOT narcolepsy, but I also know that frustration and anxiety with the "wait." If when all is said and done, your sleep study says "not narcolepsy," I hope you will come and vent here still. And, if it does say, "narcolepsy," that you will come and vent. While that might sound ridiculous, I know in my own medical journey that I had a handful of times when I had "found it," but the diagnosis never happened. I would be distraught because I simply wanted to know what was wrong with me. Unfortunately, our brains and bodies are still far too complex to have even a decent understanding of how they work. Please keep us posted about your PSG and MSLT. In the end I sincerely hope that you get answers so you are able to live life more fully. Although narcolepsy limits far more than I could have ever imagined, I am positive that my life is far more rich because I am more conscious of the choices that I make and of the glory of each daily moment. Good luck!


Beautifully said, Mike M...

#8 chimbakka

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Posted 20 July 2009 - 09:57 AM

If it is narcolepsy or it isn't, there are going to be a lot of emotions and things up in your head either way about it. Finding out it isn't can leave you feeling like "ok then what NOW??" and finding out it is can be a difficult thing to get your head around. Either way just know that you might feel weird for a bit after you find out and that's ok. I was really stressed when I got my N diagnosis, even though I was relieved to find out what was "wrong"with me after 10 years of problems... It helped me a lot to come on here and realize that how I felt made sense, and it was ok to pe pissed off or upset or etc. Know that like Mike said, either way, you can come here :) It's a nice place to vent to people who listen and understand and who aren't so close or "personal" to you that you have to walk on eggshells or watch how you word things :)
I know waiting to find out is the worse part. You'll know soon, just focus on getting past each day :)

#9 sleepless sleeper

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Posted 21 July 2009 - 01:01 PM

First, chemicalspider is an awesome name! (spiders seem to play into a few monikers here, as well as stories)

Next, as usual, WELL SAID, STU! cs, no matter what, u r still incredible u. maybe a sleepy incredible u, but an incredible u no matter what! i'm looking forward to getting to know u as well as the many other newer members here.

cs, maybe it is, maybe it isn't N. it sounds like it, but i'm certainly not a white coat wearing kinda gal.

coming to these forums will provide a lot of answers, or at the very least, some amount of assuagement. i don't think that's a word, but going off assuage, i think u know what i mean. soothing. support. destress factor is high here, and i recommend repeated visits! keep us up to date.