UARS or idiopathic hypersomnia

I have been dealing with unexplained fatigue and unrefreshing sleep for ~3 years. I have had one sleep study done and it did not show any snoring, or any apneas. However I did fall asleep the next day 3/5 naps and was diagnosed idiopathic hypersomnia. I am on stimulant meds, and it helps, but I still feel like I am not getting any restorative sleep. I am 24 and I feel like my body is falling apart.

I really think I have UARS, based on what I have read and my symptoms:
sore throat in AM
headache in AM
freezing cold hands and feet
when i put my head back I can replicate UARS symptoms (ie having the back part of my throat fall back and restrict breathing)
My GF says I snore (even though my study said I did not)

I have tested my thyroid and entire endocrine system ad nauseam, so I can cross that off my list.

My sleep doc doesn't think I have it, but I want to make sure. My PCP is awesome and is willing to put up with my persistence so how should I direct him? Should I rent a CPAP for a month and try it? If so how should I set pressure settings, etc.?

Should I do another sleep study and hope for different results?

Thanks

Well I e-mailed my doc and told him that we might as well do another sleep study and see what that one says before we try a trial. I don't want to do a trial and do it wrong.

if you think that it's UARS... see if you can find a sleep lab that will test for UARS.

I can only use the sleep lab within my HMO, and they say they can test for it, but they don't use a Pes, they just probably go by other numbers. I have had a study before at a different lab from when my insurance was different and they said I showed absolutely NO sign of apnea, but I don't know if I buy it.

I had them mail me a copy of the study today. Hopefully you folks can help me understand it.

I told my doctor to go ahead and set up another study at this new lab, outlining that UARS is suspected, so hopefully if it is there, they will find it.

I'm at my wits end here looking for the answer to this fatigue...I don't know if I can go on feeling this way forever.

Are you anywhere near Stanford? They tend to be on most insurance panels and can test for UARS using pes or by scoring RERAs?

I do not trust many labs to diagnose UARS correctly, some even when they do pes.

No, and my HMO limits me to my area.

If we knew where you were, we may be able to recommend a place.

Yes, do post your sleep study information. I'm curious if you have REM-dependent OSA.

I am actually in the same boat, perhaps. I am wondering if following a surgery, I am no longer OSA, but am UARS, and I'm afraid the diagnosis may be missed if I do a repeat sleep study at a regular 'ol sleep clinic. Here is my long, boring story of how they missed my diagnosis for 20 years...

viewtopic.php?f=1&t=47828&p=436955&hilit=+bona+fide+diagnosis#p433704

and

viewtopic.php?f=1&t=52012&st=0&sk=t&sd=a&hilit=bona+fide+diagnosis#p479645

I had 2 sleep studies before I was correctly diagnosed at Stanford Sleep Disorders Clinic. The first 2 studies done at reputable sleep clinics showed nothing but snoring and many spontaneous arousals. I convinced a sleep tech to loan me the cpap for a week to see if there was any improvement. Sure enough, I felt much better with the cpap so I knew I had a sleep breathing problem. I then got my pcp to prescribe one for me. I bought one off the internet. If you're really desperate you could probably get an autopap off craigslist. My 3rd study done at Stanford diagnosed me with OSA, AHI of 14. I could not tolerate the PES device which they said they rarely use anymore as they have new technology that detects UARS just as well. Getting properly diagnosed after years of suffering was one of the happiest days of my life.

Peoria, IL

Hi, CB, I'm from Rockford, and there are a number of other people on here from Illinois, as well.

If you go up to the right corner of the screen..below chat.. and register your username (it's free) you can send PMs (Private Messages). I don't know how big your coverage area is, but PM me, and I may be able to give you a name/number to try.

Linda

I registered, CB was too short, so I made my username longer.

My doctor just agreed to set up the next sleep study for me. I think I am starting to wear on him a little....oh well.

But yes, if you have a good doc PM me. I would pay out of pocket to get a second opinion on my studies if this one doesn't reveal anything too telling.

Does your doctor score RERAs?

Also ask your doctor which criteria he uses to score hypopneas (AASM Recommended or AASM Alternative). If he scores the Recommended way, he may be missing hypopneas, particularly in someone thin who does not desaturate. I don't know if you're thin or not, but the scoring of hypopneas the recommended way captures less than scoring the alternative way which captures less than the scoring used prior to the latest AASM guidelines. In short, a person with hypopneas could have been diagnosed as having OSA and now no longer would be diagnosed as such because of scoring changes.

As a last resort, keep in mind the possibility of getting your raw data (the graphs) from the sleep study and having someone else score it, keeping in mind that they can only score what was captured via the instrumentation used.

My first sleep study was scored by a lab at one hospital, and by their sleep physician.

This one will be scored at another hospital, by another sleep physician.

I don't know if my first study had RERA's. I am getting it in the mail (hopefully today or tomorrow), so I will post that soon.

The first hospital I had the study at the equipment seemed old and outdated. This new sleep study is being done at a hospital where everything is very new and high tech, so hopefully it will catch more stuff.

The lady at this sleep lab was like "Duh, we can detect UARS." Hopefully she knows what she is talking about!

You probably are only allowed a certain number of sleep studies per 365 days, so you might want to verify what exactly they score and how they score it at the new facility before you use up another sleep study. You think you have a more subtle form of sleep disordered breathing, so the big questions in my mind would be (1) how do they score hypopneas and (2) how do they diagnose UARS--do they score RERAs? I don't know enough about the instruments (belts etc.) so other than pes vs. no pes, I wouldn't know what to ask about that.

When is the sleep study scheduled for? It would be interesting to see your old data first, and any information they list about how they scored things.

My doctor just sent the referral in so I would assume I will be scheduled within the next two weeks or so.

At this point it doesn't really matter how many sleep studies can be scheduled within the year as my HMO will only allow me to get a study at this lab now, so might as well use it now.

Yes, I am anxious to see the report from my previous study as well. Hopefully they sent me the whole thing and not just like the doctors report of "Negative" or whatever.