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Maggie71286

Not Sure What To Do...

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About a month ago, I decided to visit a sleep specialist after 26 years of falling asleep uncontrollably.  After telling him my symptoms, he nodded and immediately said "Sounds like you have a condition called narcolepsy" and went on to explain why he felt that way.  Though this was never something that I had seriously considered,  I was suddenly convinced that I had it because he was so sure. He had me take an overnight sleep test followed by an MSLT to confirm.

 

A week ago, I went in for the results.  He gave me no details of my sleep study, such as how many times I entered REM or what my sleep latency was, he simply said "Your tests were normal, but these tests aren't really that accurate. I think we should start treating it as narcolepsy, because that's what it sounds like to me."  He put me on 150mg of nuvigil a day and it's been working great.  I've had a couple of days where I still needed a nap or two, but overall, it's made a difference. 

 

I've really been worried, though, about the lack of clarity that I have about what's going on with me.  I know that I didn't meet the diagnostic criterea for narcolepsy as my tests were "normal."  I don't want to be taking a drug for something that I might not even have.  On the other hand, I don't want to go back to how I was feeling before where everything I did was a chore because all I could think about was sleep. 

 

I'm going back for a follow-up in two months and I'm not sure what to say to him.  I never like to question doctors because I feel like it infuriates them (I didn't go to medical school, afterall.) 

 

Any advice???

 

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Nuvigil and Provigil are used to treat other sleep disorders than just Narcolepsy.  If the meds are working stick with them(while they still work)  With that being said, I am sensing that you have an underlying concern of not being sure and having a definitive answer of what is wrong with you.  It doesn't help when for most of us we go undiagnosed for so long or we are told it's all in our head, we're lazy, etc.  Sometimes the best thing is just to keep ruling out things that you don't have and not try to identify with one thing that you don't know if you have or not for sure.  If the treatment is working, god bless you, hold on to it.  It may only last a little while and when the honeymoon is over, you will be back to trying to figure out what to do.  From someone who has wanted to feel normal for so long and then experience it for about a month, take it from me.  If it lasts a month, a year, twenty or the rest of your life, don't question it, just enjoy being "awake" like "normal" people and go out there and live!

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Yeah, the only other diagnosis they might throw at you at this point is Idiopathic Hypersomnia which is a fancy way of saying "You're sleepy and we don't know why." I assume you've had blood work and everything to check hormones, vitamin, levels, etc. If not, then your doctor is a bit silly because he should have checked for an obviosu chemical cause. Also, how is your exercise level? It is possible to have metabolic syndrome and actually not be really visibly overweight; there is such a thing as skinny fat. And finally, have your blood sugar tested; type 2 diabetes causes a lot of N-like symptoms like EDS, brain fog, in ability to foucs, etc.

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Interesting.  I might look into getting some bloodwork to rule out chemical causes.  I know that I've had that done in the past and it came back normal, but that was several years ago and things may have changed.  Before I started on nuvigil, I never excercised because I would be napping during any free time I had.  Since I've been feeling better, I have been going on hikes and taking my dog on long walks every day.  I guess I shouldn't be too concerned since the treatment is helping. I'm just worried that if it is something else, like diabetes, or a vitamin deficiency, I might not be treating it properly.

 

I'm also a bit concerned by the conflicting information that I received from the dr. and the technician who administered the test.  The technician told me "You're definitely sleepy....You've fallen asleep in every nap!"  Then the dr. tells me nothing other than that the tests were "normal."  I think the doctor is convinced that it is narcolepsy because I told him that when I laugh, I can't hold things or use my hands well.  He thinks this is cataplexy.

 

Thank you guys so much for your advice. I will look into getting some bloodwork and hopefully get a little more clarity from the doctor during our follow-up visit. 

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Well, what I'm guessing he meant by normal was you didn't have any SOREMs during your naps. In other words, your naps were normal/expected waveforms. It's obviously not normal that you are that sleepy. But yeah, at my clinic the sleep tech wouldn't hypothesize anything other than telling me I slept 4 out of 5 naps because he wasn't allowed to. I think they're probably trying to cut down on these sleep techs who get too big for their britches and think they can diagnose.

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Yeah, that makes sense.  I guess I should just relax and see what happens.  Like I said, I'll look into the blood tests and try to make sure that it isn't something else that is causing my symptoms. 

 

Thank you so much for your help!

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I'm going back for a follow-up in two months and I'm not sure what to say to him.  I never like to question doctors because I feel like it infuriates them (I didn't go to medical school, afterall.) 

 

Any advice???

 

Yes. Never be afraid to question any doctor! Sure, they went to medical school ... but going to school does not mean they are perfect and can't make mistakes! After all, if that were the case, there wouldn't be any such thing as "malpractice insurance".

 

On your follow up, ask him to explain the results of the sleep study. Ask him to explain what makes them "normal". And, as DeathRabbit suggested, get that blood work done! Provigil is a stimulant. It doesn't work only on people with Narcolepsy; it works on people with excessive sleepiness, which can be caused by a number of things. If you don't have Narcolepsy, and you "just go with it" because the Provigil makes you less sleepy, you could be missing something dangerous by masking the most obvious symptom.

 

Of course, it could also be that something affected the results of your sleep studies. Certain medications can do that, as can things as simple as nervousness or sleeping in a bed that isn't your own. I'm not saying the doctor is wrong, just that he can be, and you should make sure nothing is being missed.

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Yes. Never be afraid to question any doctor! Sure, they went to medical school ... but going to school does not mean they are perfect and can't make mistakes! After all, if that were the case, there wouldn't be any such thing as "malpractice insurance".

 

 

I can very confidently say that I , as well as most PWN on this discussion board, clearly know more about narcolepsy than the sleep "specialist" i am currently required by the Army to see... so NEVER be afraid to question a "doctor" perhaps they were sleepy during that class and skated by(yes pun intended) Also NEVER be afraid to seek a second, third, or even fourth opinion..whatever it takes for you to be confident in your diagnoses. However, a daytime stimulant is very common treatment for EDS.. so fear not.. you are on a very tpical treatment IMHO

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