I have just read through this very long thread and I must say it is very interesting and informative.  Tillymarigold is right to say that a MSLT must be done after a CPAP titration study but that is not a CPAP trial.  

The so-called gold standard for diagnosing UARS is Esophageal Pressure Monitoring, something most sleep clinics can't do.  It is noted in the first item of GuestMJ's long post of quotations from various studies.  And from what I have read about it, it is not something most people would want to do.  It is, however, the only way that you will ever be able to prove whether or not you have UARS.  

I admire your persistance and thoroughness in dealing with your problem.  Good luck to you; I wish I could offer you something more.

Frances wrote:

The so-called gold standard for diagnosing UARS is Esophageal Pressure Monitoring, something most sleep clinics can't do.  It is noted in the first item of GuestMJ's long post of quotations from various studies.  And from what I have read about it, it is not something most people would want to do.  It is, however, the only way that you will ever be able to prove whether or not you have UARS.

*g* As my sleep doctor said, "Well, we could shove a catheter down your nose and measure your airflow more accurately and definitively diagnose you with UARS, or we could give you an AutoPAP for a month and say that if it works it's definitely UARS, and if it doesn't, it's probably not. The AutoPAP is cheaper and less painful."

I like his attitude, better keep him.

Frances wrote:

I like his attitude, better keep him.

I do too, but he did diagnose me on MARCH 12 and I still don't have the machine. He just sent the script on April 4 and they called me yesterday to tell me a resp. therapist would set me up within 48 hours (48 hours being Easter, I'm not holding my breath).

an MSLT usually follows a sleep study....and if you've recently had a sleep study, they may want to bring you back in for what they call a "Titration study" where they wire you up and also put a c-pap on you to see if your sleep is different/better on the machine.  One night is all they need for a titration study...hope that clears it up a bit...maybe your Dr. didn't communicate that with you.

I have narcolepsy....and I also have NO deep sleep/mild apnea and primary snoring.  I am on adderall and provigil...and had a follow up MSLT the morning of my follow up sleep study.....and they had me TAKE my Provigil before the MSLT started to see if it was helping my brain to stay awake during the day.  Even on Provigil...my MSLT was virtually the SAME as it was 6 months before when I was totally untreated.  That's when they added the Adderall.  It has helped....but I still feel sleepy during the day and wake up feeling like I got hit by a truck.

I ALSO have fibromyalgia....which is something your Dr. may want to test you for.  That can account for the flu-like feelings and the fatigue and the sleep difficulties.  The ONE BEST thing I have ever done for my fibro is invest in a Tempur Pedic bed and pillow.  It is AWESOME for fibro...no pressure points build up during the night...and pressure points are  part of what causes you to wake up so many times during the night!  You do not need to spend a ton of $ on the Tempur-Pedic brand...although I highly recommend it.  I have also purchased pillows at Costco (good ol Costco...my favorite store)  a pack of two cervical pillows made of the same type of memory foam for 40 bucks.  I got my boys the mattress covers made out of the same memory foam at Costco too.  They have been sleeping better too.

I'm 38, feeling like 68 most days....so I know how you feel.  

Good Luck Quinn!

Hi Quinn.

I sort of can understand your strugle, as I´m in the middle of mine as well.

I'm 32, skinny, and jobless because of my poor sleep and exesive daytime sleepiness for about 2 years already.

I had had poor sleep, sleeping disorders and therefore anxiety and depression.  I aways blamed myself thinking it was psychological and went to many psychiatrists who always gave me antidepressants that didn´t work.

The sleep situation had to go really bad (two years of even worse sleep now) for me and my family to realize it must have been something physical.  So I took a sleep study.  Surprise!  It showed severe OSAHS.  30/hr.  At first I was so happy to hear that it was a desease and not me, the responsible for my problem.

Now I don´t know what to think, for my titration, done at a different sleep center showed a different thing.  A preassure of 4 only, and mild apnea only.  They didn´t even believe I had sleep apnea when I walked in, saying I was not a typical fat, old male apnea sufferer.

I tried CPAP for days only.  I focused on cures rather than on treatment.  Doctors sold me two surgeries on my soft palate promising they would cure me.  Today I know these procedures don´t work for severe cases of apnea like mine.  So I´m back on CPAP, trying to find my preassure now, for I´m not sleeping any better yet.

My point after this long story is that although I´m still trying to find out what´s wrong with me, I´m closer to it than where I was before.  Trust your instincts, don´t doubt yourself.  Persevere.  That is something I´ve learned from all this, even when it´s come to a point of me feeling like I shouldn´t know more than te doctors.  Unfortunately that has been the case and I have had to learn not to feel bad because of it.  I´ve also done a lot of research.

Perhaps an idea would be to go to a new doctor, a good one, and not tell him/her about your old psycological diagnosis.  Tell them you're just sleeping poorly and have them tell you what they think.  Or tell them only aboult your sleep study that showed the UARS.  It seems to me as if doctors are very influenced by other doctors´ diagnosis, not considering the fact that they could be wrong.  It's just an idea.  I also have to say I´m not a doctor to give you advice.

I live in Colombia, South America.  There isn´t much good treatment, specialized doctors or sleep centers here.

So I left my old neurologist, the one who found out about my sleep apnea, and for which I´m eternally greatful.  She didn´t believe me I wasn´t sleeping any better anymore, after my UPPP and my 4 preassure adjusted CPAP.

So I just found this new neurologist who understands all this and believes me.  He runs a sleep center, knows how to read sleep studies, and actually shows concern about helping me.

He explained to me how my first sleep study was so full with almost only hypopneas.  A lot of them (215 the night aprox).  He says it's strange how I only suposibly need a preassure of 4, when I have severe apnea.  He actually believes I feel like !@#!.  So, I'm scheduled for a new sleep study/titration I'm in waiting list for.

Now my questions.  Are hypopnea and UARS strictly related?  I mean, considering the fact that I have all this many hypopneas, is it possible that I have UARS?  Is there a CPAP machine specialized for this type of apnea?  Will an auto PAP help me find my preassure while I wait for my new sleep study/titration?

Thanks to anyone on this forum for reading this long story, any help would be appreciated.  Quinn I hope thigs work out well for you.

John.

John32 wrote:

Now my questions.  Are hypopnea and UARS strictly related?  I mean, considering the fact that I have all this many hypopneas, is it possible that I have UARS?  Is there a CPAP machine specialized for this type of apnea?  Will an auto PAP help me find my preassure while I wait for my new sleep study/titration?

1. No, it's either/or. UARS is, in the simplest terms, a variation of sleep-disordered breathing characterized mainly by hypopneas, RERAs, and flow limitations that does *not* rise to the level of SAHS numbers-wise. It's believed by some (but not proven) that it's either an early stage of SAHS or a milder form of it. In women particularly, the day-to-day symptoms of UARS and SAHS are basically the same (men with UARS tend to have much milder symptoms than men with SAHS). But if your numbers are high enough to indicate SAHS, then you don't have UARS. (For example, my AHI is 4.6 and RDI 5.7, but my flow limitations occur for extended periods of time, basically the whole time I'm asleep.)

2. No, it's the same sort of machine since it's basically the same disorder.

3. Well, it could, but the range of the auto PAP needs to be prescribed. You can't have the low end be too low (makes you feel like you're suffocating and doesn't prevent obstructive apneas/hypopneas) or the high end be too high (causes central apneas).


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Hello,
You should try taking a diatary supliment called  5 HPT
I had a problem were I was getting zero deep sleep my girl friend did research and so I tried it and WOW AMAZING the 2nd day I was flying high or so it seemed i walked 10 miles that day in ten different walks i had so much energy.
I havent had a nother study done but i dont think i need one I think i all better 5 htp is amazing
GET IT FROM A NATEROPATHIC PHYCITION OR A VERY GOOD HEALTH FOOD STORE SOME 5 HTP DOSNT WORK LIKE FROM WALLGREENS IT DOSNT WORK
 GOOD LUCK
JONTOD