can all sleep studys pick up UARS

[kal81]

I had a sleep study done, I was given a sleeping tablet.
Slept a good 7 hours. I had no arousels and was told everything was fine.

I suffer from chronic fatigue and fibromalalgia type symptoms. I never feel refreshed on awaking. Also have bad memory problems and brain fog. This is probrably the last ten years.

I've actually tried an Apap machine for 5 months and had thr best sleep i have ever had.
But the last few months all my symptoms are back..

I've tried all the pressure settings and now the machine won't go any higher..

So I wanted to have a sleep test to get tritated.
Now I've been told I have no sleep apnea.

I think I have UARS. As I've always been a mouth breather and feel like I'm suffocating when I'm trying to sleep.

I have heard that you have to do a special test for UARS.

Has anyone had a sleep test done that came back clean then got tested for UARS or would the test give some indication of a breathing problem.

I was never told after the test how long I spent in deep sleep except that did sleep quiet deep. Also my ENT says my nasal passages are very thin.

Spent the last ten years trying to figure out what is wrong..I thought I found a solution and the few months on Apap machine that worked were like heaven on earth..now I'm confused after my sleep study..I want that dream sleep back...

[mellabella]

There's a super fancy test that involves a balloon-like object in the upper airway to measure Pes (esophageal pressure). Like the vast majority of folks, my UARS was diagnosed because my RERA index (respiratory event related arousals) was very high (40's), at the same time my apnea-hypopnea index was single-digit low--and the shape of my breaths as well as some basic anatomical features confirmed the diagnosis. I needed an actual pulmonologist to put all the pieces together and figure it out, so you want to start there (many certified "sleep specialists" are not necessarily pulmonologists as their primary specialty).

I'm very confused as to why you are being told you "have no apnea" and by whom, and why you think you need to exceed your max APAP machine pressure (excessive pressure itself can cause respiratory-distress related arousals), but you could start with finding a pulmonologist to retitrate you for UARS and possibly on a bipap, if you truly need higher pressures. .

[avi123]

Testing for UARS (Upper Airway Resistance Syndrome) is a touchy subject b/c most sleep study labs don't do it. As a matter of fact, even if you were tested and found to have it to some level then CPAP would be the first treatment of choice, before discussions about surgical approaches. Are you interested in info about UARS; RERAS, and Flow Limitation, besides what you can get via the above search box?

[kal81]

Thank you..I have read everything I could find on the internet and I'm 100 per cent convinced I have this problem

My worry is why the test didn't come up with an diagnosis..I have heard with UARS it can go unrecorded in the test.

I have not exceeded the pressures on the machine..I meant I have tried every variation on pressures I can

Nobody will titrate the machine because the test came up with nothing.

[archangle]

Many labs don't bother to try to look for UARS.

Many doctors are uneducated or arrogant about UARS. Apparently, it takes some finesse to find it with a "regular" sleep test.

Many insurance companies play ignorant about UARS and won't pay for treatment, leading sleep labs and doctors to pretend UARS doesn't exist.

What pressure settings are you using on your machine? Do you own it and know how to change the pressure?

[kal81]

I live in Germany, I was given a home sleep study which picked up 146 arousels (later I was told it was just snoring) I was never given a follow sleep study

Somehow the doctor convinced the insurance company to pay for a machine. All the while I never knew this was not normal procedure. I was ready to do anything so many years of fatigue had took its toll on my body.

The machine was set at 4-14 to start with. The first 5 months were amazing I never knew my life could be like that..I felt like a kid again..no fatigue..no anxiety no aches..only energy energy..know all the symptoms have come back for the last four months..I've lost my job and have ended up totally housebound again..can't face the world again soo extremely fatigued..anxious and aching all the time..

The sleep i was getting from the machine made me for the first time I felt myself again..the doctor has tried all the pressure changes 6-16, 8-18, 12-18.. nothing makes a different.

So they Sent me for a sleep test..now the test comes back with no sleep apnea..I have been told I don't need a machine..

I actually had septoplasmy surgery last year and that helped for a while..I did something stupid and started smoking again also put on some weight..I think that damaged my upper airway some more..I've stopped smoking but no difference..Also got the weight level back..

Now I'm scared from all Ive read about UARS that now one has ever posted a success story..can't live like this all my life..been to many doctors ...nowone seems to believe me..even now my family have had enough..
I'm soo confused..

[Rustsmith]

During my sleep test they did the Pes test because I fit the classical physical characteristics for UARS (thin, small mouth and throat, low blood pressure, etc). My AHI was very low but my RERA was high and the Pes showed the elevated pressures during inhalations indicative of blockages. This did not impact the first part of the sleep study too much but did have an impact on the titration results because it indicated that I needed more pressure to address the UARS than the titration would normally have indicated.

The Pes is not pleasant, but also not painful. The tube in the back of your throat feels a little bit like a large popcorn hull is stuck back there. I understand that some labs now have a high tech nasal flow detection system that has been shown to be almost as good at detecting UARS and is non-invasive. The catch is that there are also labs that use a nasal thermister setup and these have been shown to be almost worthless.

One of the interesting issues is that my insurance covers sleep apnea but not treatment for UARS. Fortunately, my AHI was just high enough to qualify as mild sleep apnea.

[mellabella]

One of the interesting issues is that my insurance covers sleep apnea but not treatment for UARS. Fortunately, my AHI was just high enough to qualify as mild sleep apnea.

Ah yes, that whole thing. I can get studies done and doctors appt's covered (and even medications like Provigil) due to the symptoms of UARS, but yeah, no durable medical equipment is covered since all treatments are considered "experimental" and my life isn't at risk from desats.

But back to the original poster--if the bottom suddenly dropped out of your mood and energy level after having a very good, sustained response to xPap therapy, have you made sure you've looked into the possibility of clinical depression, vitamin deficiencies, thyroid issues, any medications (even over the counter) you might be taking that affect sleep architecture, etc.?

[SleepingUgly]

You don't have to have esophageal manometry (pes) to diagnose UARS. You need a lab that scores RERAs. How high was your AHI in the first place for you to have been diagnosed with OSA (which it sounds was subsequently retracted)?

[phoebe368]

I had 2 sleep studies done at 2 different accredited sleep labs. The study results said mild UARS and snoring. I still knew something was very wrong so I went to the Stanford Sleep Disorders clinic and had a study there. I requested the PES monitor but found it intolerable - they thread it through your nose and it hangs in your throat. I couldn't sleep with it. They said their equipment could pick up UARS events anyways which was true. My study results showed an RDI of 14, all hypopneas and many, many flow limitations which disrupted my sleep. I don't know if their equipment was better but they told me that they score respiratory events more aggressively than what is standard.

[SleepingUgly]

Good to see you, Phoebe! How are you doing?

[phoebe368]

Thanks for remembering me! You are so kind. Still constantly working on my sleep, as usual. Even though I don't have sleep apnea anymore (a sleep study confirmed this) I still have to be mindful of things that affect my sleep. After my trache surgery, I have become more sensitive to certain foods like sugar, salt, msg, caffeine, vitamins and medications. I have to avoid all these substances or else my sleep quality deteriorates and I feel lousy the next day. I think it is because they had to remove the isthmus of the thyroid because it was low hanging. I feel that I have thyroid problems now but my thyroid test came back normal.

[avi123]

Thanks for remembering me! You are so kind. Still constantly working on my sleep, as usual. Even though I don't have sleep apnea anymore (a sleep study confirmed this) I still have to be mindful of things that affect my sleep. After my trache surgery, I have become more sensitive to certain foods like sugar, salt, msg, caffeine, vitamins and medications. I have to avoid all these substances or else my sleep quality deteriorates and I feel lousy the next day. I think it is because they had to remove the isthmus of the thyroid because it was low hanging. I feel that I have thyroid problems now but my thyroid test came back normal.

Question,

Has anyone also removed your uvula and if yes you can't pronounce the Ch in Chanukkah as it should be?

[avi123]

Thanks for remembering me! You are so kind. Still constantly working on my sleep, as usual. Even though I don't have sleep apnea anymore (a sleep study confirmed this) I still have to be mindful of things that affect my sleep. After my trache surgery, I have become more sensitive to certain foods like sugar, salt, msg, caffeine, vitamins and medications. I have to avoid all these substances or else my sleep quality deteriorates and I feel lousy the next day. I think it is because they had to remove the isthmus of the thyroid because it was low hanging. I feel that I have thyroid problems now but my thyroid test came back normal.

Question,

Has anyone also removed your uvula and if yes you can't pronounce the Ch in Chanukkah as it should be?

[nanwilson]

Thanks for remembering me! You are so kind. Still constantly working on my sleep, as usual. Even though I don't have sleep apnea anymore (a sleep study confirmed this) I still have to be mindful of things that affect my sleep. After my trache surgery, I have become more sensitive to certain foods like sugar, salt, msg, caffeine, vitamins and medications. I have to avoid all these substances or else my sleep quality deteriorates and I feel lousy the next day. I think it is because they had to remove the isthmus of the thyroid because it was low hanging. I feel that I have thyroid problems now but my thyroid test came back normal.

Question,

Has anyone also removed your uvula and if yes you can't pronounce the Ch in Chanukkah as it should be?

Avi, HUH????????? what are you talking about, your statement does not make sense.