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Possible Narcolepsy


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#1 lkl

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Posted 31 January 2013 - 02:49 AM

I saw a third sleep specialist today. Something he said to me that I thought would be useful to share here, was that the MSLT is a good "rule in" test, but not a good "rule out" test. That is, if you are positive for narcolepsy on the MSLT, then you are very likely to have narcolepsy; but if the MSLT is negative, that doesn't mean you don't have narcolepsy, just that you may or may not have it.

 

I know that there have been lots of people, like me, who were not able to sleep like they normally do in their MSLT. He also told me that 30% of PWN will have a negative result on their first MSLT. Subsequent MSLTs are more likely to to show positive results for PWN according to him.

 

With the symptoms I have, he has given me a "possible narcolepsy" diagnosis. He wants me to do another overnight sleep study and MSLT. But in the meantime he has started me on a trial of dexamphetamine.

 

I also wanted to ask for some advice. I was referred to this sleep specialist by my local doctor (after this new sleep specialist was recommended to me, by my boss, who is friend's with this doctor's mother). So my other sleep specialist didn't know about the appointment I had today (I wanted to keep my options open). My question is, should I go back and see my previous sleep specialist in a couple of weeks, when my next appointment is currently? Or cancel it for now, and decide if I want to see him at a later date? Last time I saw him, he sent me to have an MRI (I have the results of that, and it was normal), and from our discussion from my last appointment I think he was also headed down the track of a repeat MSLT.

 

 



#2 DeathRabbit

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Posted 31 January 2013 - 10:03 AM

There's no reason  to keep paying two people for the same thing I'd say. Just the pick the one who seems more invested and less like an assembly line worker. Unless you just have a lot of money and don't mind missing the work, I wouldn't recommend it. Plus, seeing two docs liek that increases the chance they'll prescribe you osmething that interacts with what the other prescribed. As far as the dex goes, just be careful with that. I would recommend not using it daily, but rather on the particularly bad days. Getting addicted to that stuff, it gets to the point where you have to have a daily fix just to have a crappy day, whereas without it, making it out of bed might be impossible. You might be better off asking for one of the "Vigil" drugs.



#3 lkl

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Posted 01 February 2013 - 04:42 AM

Thanks for your reply.

 

Yea, I think I have decided to go with the new sleep specialist for now, and do the sleep study that I have booked with the new sleep specialist. Then after I have a review appointment to get those results, I'll decide if it is worth going back to my previous specialist. The previous one is minutes from my house, whereas the other one is a couple of hours- so having a dr who is close by does have that benefit in long term. They both seem quite willing to listen, and seem to care. The previous one seems to be a bit less comfortable with less than textbooks presentations, which is good in terms of not jumping to the wrong conclusion. But the whole sleep disorder diagnosis thing is just so drawn out, that I keep getting stuck on feeling that I will feel like this forever, with no answers or solutions.

 

The new guy, did have the benefit of all the tests, and trials that I have already done (a few different things for PLMS, and a dental splint for snoring). I guess getting the second opinion, and him thinking the same as my previous doctor- i.e. possible narcolepsy means something.

 

With regard to the dex, I do plan to be careful with it. I was planning to at least not take it on most weekends, and if I am having a relatively good day, then not take them on those days either. I think he would have been happy to prescribe Modafinil instead, but he said that he likes the dex because it has a wider dosing flexibility. Also I don't meet the criteria to get any funding from my insurance for the modafinil, so it would work out quite expensive. I think that if my second MSLT shows positive for narcolepsy, then modafinil would be a more affordable option than it is at the moment. And I do agree with you, in principle that that would be a better drug to be on long term. But I really do think that most drugs can have such an individual effect on each person, that without trialling, it is hard to know which one would be the lesser evil, and give the most benefits.



#4 lkl

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Posted 26 March 2013 - 05:05 AM

I had my follow up appointment with my sleep specialist yesterday, following my most recent overnight sleep study/MSLT from a couple of weeks ago, so thought I'd give an update.

 

My current sleep specialist has diagnosed me with narcolepsy. He doesn't think I have "classic narcolepsy" -  I guess because I don't have typical or significant (?if at all) cataplexy- but some form of narcolepsy.

 

My MSLT wasn't really conclusive though. He said I fell asleep during the naps in a "normal" amount of time (which is more than than I did in the first one, where I didn't have more than micro-sleeps). But that I was "drifting off to sleep" much earlier (but not asleep for long enough to count as "sleep" when they score the MSLT- so similar to my first MSLT in that respect). He said that drifting off to sleep that early (he didn't tell me any numbers), was "abnormal" and indicated a problem, and that in the context of my clinical symptoms etc, that he was comfortable with narcolepsy, as a working diagnosis. If something else comes up, then we can change the diagnosis if needed. My overnight sleep study the night before this MSLT was essentially "normal".

 

It all feels so uncertain, but I have seen so many different doctors, and had so many tests over the last few years, than I don't really think that anything else is causing my sleepiness. Narcolepsy does seems to fit.

 

He is keeping me on the dexamphetamine that I have been on the past couple of months, and adjusting the dose and timing a bit. I still don't meet the criteria (based on my MSLT) for subsidized modafinil, but the dex seems to be working alright for me at the moment anyway. In combination with my two, 30 minute planned naps (at lunchtime and when I get home from work), the dex helps me to have a coupe of blocks of few hours where, even though I still feel tired, I’m much more awake and alert and less likely to actually fall asleep, or go into a half awake/half asleep state where I don’t know what I’m doing. So overall it makes life much more manageable. 

 

I haven't been taking the dex on the weekends, so hopefully, that will help to slow the development of tolerance.



#5 DeathRabbit

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Posted 26 March 2013 - 09:17 AM

Good! I hope it works going forward as well. The weekends thing is a definitely a good idea. Also, you can ad hoc adjust your dosage. Docs technically don't like you doing that but if you're feeling particularly hardy one day, only take half the dose. Conversely, it's okay to take a little bit more if you absolutely have to. The best way to avoid the tolerance I guess is to take as little as possible, but if it's not enough to help then I guess that wouldn't make sense either. Sorry you don't qualify for the vigil stuff.



#6 lkl

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Posted 27 March 2013 - 03:39 AM

Thanks, DeathRabbit



#7 dormir

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Posted 02 April 2013 - 09:43 PM

Your drifting to sleep during naps experience is very similar to mine.  I hope you continue to find relief with the medication you are using and your scheduled naps.  Those sound lovely!