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Narcolepsy/eds/hypersomnia Treatment Without Mslt Question


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#1 Teadrinker

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Posted 21 December 2013 - 11:48 PM

Hi everyone,

 

First of all, I must state I am not diagnosed with narcolepsy and have never brought the issue up with a doctor (it's been a few years since I've seen one). This all started roughly six years ago when I contracted mononucleosis concomitant with cat-scratch disease. Ever since then, I get 12 hours of sleep if undisturbed, and am extremely tired throughout the day. I have to set multiple alarms on multiple devices to wake on my own; I've slept through alarms many times. As of late (past year) the tiredness has increased. Lastly, I am not even slightly overweight, if anything I am underweight, so I doubt I have sleep apnea.

 

I would like to know if it is even worth it to bring it up with my doctor. I think armodafinil/modafinil would benefit me greatly. My main fear is a doctor would dismiss the idea that I need treatment for EDS and tell me to get plenty of rest/water/ect. Or Worse, tell me a sleep study would be needed. A sleep study is out of the question at the moment. I'm guessing people need an MSLT for an official diagnosis and insurance reasons for the medication?

 

My question overall is, is it worth the trip to the doctor in hopes that I would be prescribed modafinil?



#2 doinmdirndest

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Posted 22 December 2013 - 03:01 AM

you need a diagnosis before you will get stimulants.  my diagnosis was ADHD and mild sleep apnea (I did not respond to CPAP) when at first I was prescribed Adderall.

 

I think the apnea was the foremost reason the md began Adderall.  apnea testing in an overnight study called a polysomnogram  (correct medical term check?) is very easy to get; firms offering the test profit substantially if you test + for sleep apnea and are rx'ed a CPAP device.

 

the MSLT is always preceded by the overnight study, which proves you had a good night's sleep prior to the MSLT.

 

you might respond to a CPAP device, if you have sleep apnea, and if you don't respond the fact that you don't along w/the apnea diagnosis gives your MD some degree of medical justification to begin a stimulant such as modafonil.   these days, it will be the first such med you will get.   doesn't work for some, does for others.  they don't know how it works.  it can cause mental lapses, I inadvertently shoplifted twice on this med (returned to the store and paid, of course, for what I had wandered away with both times) and some suffer more serious effects.

 

the strongest medical justification for an MD to prescribe stimulants is an MSLT that is positive for n. or i.h.   it must be + for n. if your insurance is to cover xyrem.

 

my MD ordered an MSLT that was + for i.h., but only 'highly suggestive' of n., it got me the higher doses I need.  be nice it it got me xyrem as well.   the stuff could easily offset my need for the necessary evil that is my Adderall.  

 

 

 

the MSLT is not as easily accessed as the apnea test.      

 

if you have never experienced stimulants, beware of them.  you might benefit from them, just be sure to wait a day or so before acting on any seemingly ingenious/wonderful ideas that come to you on a stimulant.  

 

lastly, telling a doctor you want testing in order to get stimulants won't work out so well.  just tell the doctor of your sleepiness and so on; in all likelihood he will order an overnight sleep apnea test.  inquire about medicines in your follow up visit, keep an open mind, lots of overly tired people are made wakeful by a CPAP device alone. 



#3 Hank

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Posted 22 December 2013 - 08:12 AM

I think you may beginning to set a course that will not benefit you.

 

You said a sleep test was out of the question but you did not say why.

 

Narcolepsy is far from the only illness to cause sleepiness. And Narcolepsy is not the "go to" diagnosis when sleepiness is a symptom. And not all of them are treated with stimulants.  

 

I think it would be a very good decision for you to speak with a doctor. For sleep, a Sleep Medicine Specialist (a Neurologist who is fellowship trained in Sleep) is the best choice.

 

Good doctors don't treat symptoms without a diagnosis.

 

Not everyone with sleep apnea or Narcolepsy is overweight. I have had a doctor who was reluctant to consider N because I was not overweight.

 

I think your best bet is to find a well qualified doctor and be honest about your symptoms.



#4 Teadrinker

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Posted 23 December 2013 - 12:21 AM

I think you may beginning to set a course that will not benefit you.

 

You said a sleep test was out of the question but you did not say why.

 

Narcolepsy is far from the only illness to cause sleepiness. And Narcolepsy is not the "go to" diagnosis when sleepiness is a symptom. And not all of them are treated with stimulants.  

 

I think it would be a very good decision for you to speak with a doctor. For sleep, a Sleep Medicine Specialist (a Neurologist who is fellowship trained in Sleep) is the best choice.

 

Good doctors don't treat symptoms without a diagnosis.

 

Not everyone with sleep apnea or Narcolepsy is overweight. I have had a doctor who was reluctant to consider N because I was not overweight.

 

I think your best bet is to find a well qualified doctor and be honest about your symptoms.

 

Thanks for the replies! Hank, the reason why I do not wish to pursue a sleep study is, I doubt my insurance will be able to cover it. I have a very high deductable. I've read that sleep studies are fairly expensive. (I realize Nuvigil and modafinil are expensive also, but from what I gather I can at least manage the cost). But I agree with you fully, were it not for this, I would like to find the underlying cause.

 

For near future, the cost of a sleep study makes it simply unobtainable for me. At this point I think treating a symptom (EDS) is better than doing nothing at all.

 

@doinmdirndest, Thanks for all of the info!



#5 Chemist

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Posted 23 December 2013 - 06:15 AM

Unless you're experiencing the symptoms of cataplexy, a sleep study would not and should not be the first thing checked. Regardless, you should absolutely be seeing a physician and seeking a diagnosis because obviously you have something significant going on. I imagine they'll want to do routine bloodwork to start with, you can probably expect a complete blood count and possibly a thyroid panel. Those should be covered by almost any insurance plan and are not terribly pricey to begin with. If it gets to the point that you need a sleep study, and your insurance will not cover it, see if any health networks nearby who perform sleep study testing have patient assistance programs. If you qualify, you may be able to get your sleep study at reduced cost or free of charge. It's important to explore all your options, because out-of-pocket costs for sleep studies are frequently several thousand dollars.



#6 Teadrinker

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Posted 28 December 2013 - 07:56 PM

Unless you're experiencing the symptoms of cataplexy, a sleep study would not and should not be the first thing checked. Regardless, you should absolutely be seeing a physician and seeking a diagnosis because obviously you have something significant going on. I imagine they'll want to do routine bloodwork to start with, you can probably expect a complete blood count and possibly a thyroid panel. Those should be covered by almost any insurance plan and are not terribly pricey to begin with. If it gets to the point that you need a sleep study, and your insurance will not cover it, see if any health networks nearby who perform sleep study testing have patient assistance programs. If you qualify, you may be able to get your sleep study at reduced cost or free of charge. It's important to explore all your options, because out-of-pocket costs for sleep studies are frequently several thousand dollars.

 

Thanks for the information, Chemist. I'll make an appointment with a physician in the near future. For those who are curious, I'll likely post again after the appointment.