UARS diagnosis

I was diagnosed with UARS after a home sleep study then a home flow machine study ( not sure of terminology). Diagnosis about two years ago after a boyfriend with sleep apnoea and CPAP machine told me I'd stopped breathing during the night. I struggling with the diagnosis although was told I had episodes every 3 minutes and was reassured I would feel loads better using machine. Initially given nasal mask only and had loads is problems so stopped using machine for most of the last two years! Back with the ex bf who initially told me I had a problem and he's persuaded me to try again! Got a full face mask now and it's made a huge difference as I can now keep mask on all night.

So to my questions. Denial! Is that something others have felt.
How long to feel a difference? My partner said it was at least 6 months with him - he has severe sleep apnoea though so not the same as me.
UARS does it ever get better?
Read some stuff about diagnosing it on here and it seems like it's difficult so how can they be sure I have it?

I'm in the UK so all healthcare and equipment is free.

Thanks, Anna x

Should probably also say pressure is set at 12 and no ramp up. Humidifier set at 18 degrees.

Hi Anna,

In 2011, I had home sleep study test and was diagnosed with moderate apnea. Recently, I ha a full scale test and was diagnosed with a 5.9 AHI but at 23 RDI which suggests an UARS profile even though I didn't officially get the diagnosis.

For information on the best way of diagnosing it, this site may be helpful:

Polysomnography (sleep study) with the use of a probe to measure Pes (esophageal pressure) is the gold standard diagnostic test for UARS.[citation needed] Apneas and hypopneas are absent or present in low numbers. Multiple snore arousals may be seen, and if an esophageal probe (Pes) is used, progressive elevation of esophageal pressure fluctuations terminating in arousals is noted. UARS can also be diagnosed using a nasal cannula/pressure transducer to measure the inspiratory airflow v. time signal.

http://en.wikipedia.org/wiki/Upper_airw ... e_syndrome

Unfortunately, most labs don't go to this trouble. Now that I am typing this, I realize I still don't truly understand how the RERAS were diagnosed in my case so I think I may be placing a call to the lead tech for more information. It seems accurate based on my symptoms but I will would like to know.

In your cause, how was UARS diagnosed?

I know the experience of denial is not uncommon. I didn't have that regarding the diagnosis as actually I welcomed it because I thought it explained my sleep difficulties. Unfortunately, when I struggled so much with pap therapy, I was prone to denial as far as the need to wear the mask.

As to how long it takes to feel better, it can take months for some people. But there are folks who have posted on this site about how it took awhile but they did see improvement. My case is unusual so don't go by my situation.

Anyway, good luck with your therapy.

49er

I was diagnosed just with a finger pulse oximeter overnight at home - they did it three times over the space of a year and got the same results every time. Then I spent a week with a cpap machine to analyse pressures needed.

I have always snored - loudly according to my children and had the episode where my boyfriend said I stopped breathing.

I work shifts including night shifts and was asked to stop those - but I can't, and lose weight - ummm yeah a work in progress lol!

Anna x

UARS needs to be diagnosed using an EEG during the sleep test, and that's something rarely done during a home test, and if you have any way of doing a lab test you'd be much better off.

49er wrote:For information on the best way of diagnosing it, this site may be helpful:

Polysomnography (sleep study) with the use of a probe to measure Pes (esophageal pressure) is the gold standard diagnostic test for UARS.[citation needed].

http://en.wikipedia.org/wiki/Upper_airw ... e_syndrome

Well, they ain't gonna find a "citation" cause that hasn't been the case since 2008.

Here's another "citation needed":

People with UARS usually respond to treatment with no long term sequelae.

Sludge wrote:

49er wrote:For information on the best way of diagnosing it, this site may be helpful:

Polysomnography (sleep study) with the use of a probe to measure Pes (esophageal pressure) is the gold standard diagnostic test for UARS.[citation needed].

http://en.wikipedia.org/wiki/Upper_airw ... e_syndrome

Well, they ain't gonna find a "citation" cause that hasn't been the case since 2008.

Here's another "citation needed":

People with UARS usually respond to treatment with no long term sequelae.

Thanks Sludge, I was hoping you would respond and thanks for the corrections.

Hmm, I thought many people with UARS due to being hypersensitive had great difficulty with pap therapy and even with dental devices. And even if there is a response initially, that seems to wane over time. Admittedly, I don't have any links to support this but there does seem to be the experience with many people with UARS although as always, your mileage will vary.

Anyway, just left a message for the lead sleep tech to call me back so I can get more information on how RERAS were scored in my sleep study. Should have done it right away but better late than never I guess.

49er

Noo1967 wrote:I was diagnosed with UARS after a home sleep study then a home flow machine study ( not sure of terminology). Diagnosis about two years ago after a boyfriend with sleep apnoea and CPAP machine told me I'd stopped breathing during the night. I struggling with the diagnosis although was told I had episodes every 3 minutes and was reassured I would feel loads better using machine. Initially given nasal mask only and had loads is problems so stopped using machine for most of the last two years! Back with the ex bf who initially told me I had a problem and he's persuaded me to try again! Got a full face mask now and it's made a huge difference as I can now keep mask on all night.

So to my questions. Denial! Is that something others have felt.
How long to feel a difference? My partner said it was at least 6 months with him - he has severe sleep apnoea though so not the same as me.
UARS does it ever get better?

Yes, it does! Sometimes all it takes is having your SleepyHead charts reviewed to determine whether your therapy is effective. Unfortunately, your type of machine is not data-capable, which is a sad side-effect of the following:

I'm in the UK so all healthcare and equipment is free.

It has an SD card so doesn't that mean data is stored?

tan wrote: Unfortunately, your type of machine is not data-capable, which is a sad side-effect of the following:

I'm in the UK so all healthcare and equipment is free.

well, there's nothing to keep someone from taking some of the thousands they're saving not having to pay for ridiculous insurance rates and doctor visits and sleep labs over here, and just BUYING a machine if the free one they've gotten isn't doing good for them

Guest wrote:It has an SD card so doesn't that mean data is stored?

Nope. Assuming your profile is accurate and you have an S9 Escape, you got stuck with a "brick". Your machine records compliance and summary data only, and does not have any efficacy or usage data beyond what is required to prove that you're actually using the thing and giving you a very high-level summary. No help to you whatsoever.

Two things: First, it would be a good idea to confirm the equipment because often newbies accidentally select the wrong model from the pull-down menu. Noo1967, does it say "Escape" by the Start/Stop button? If not, what does it say?

Second -- If it is the Escape, then there is no summary data. Only the number of hours used. The Escape Auto has some summary data but the Escape has absolutely no treatment data, not even summary.

Thanks for your help.

I'll keep trying with it but just started on antidepressants which won't be helping!

Anna x

Noo1967 wrote:Thanks for your help.

I'll keep trying with it but just started on antidepressants which won't be helping!

Anna x

Is there a way for you to actually rent out a more advanced xPAP (VPAP/BiPAP Auto is the best option) for a brief period of time (like a month)? That could let the forum decide whether your treatment is optimal or not. And if it is, then it is just a question of time.

palerider wrote:

tan wrote: Unfortunately, your type of machine is not data-capable, which is a sad side-effect of the following:

I'm in the UK so all healthcare and equipment is free.

well, there's nothing to keep someone from taking some of the thousands they're saving not having to pay for ridiculous insurance rates and doctor visits and sleep labs over here, and just BUYING a machine if the free one they've gotten isn't doing good for them

Absolutely. Not too many people, however, can risk such an investment. For example, if a VPAP is eventually needed, money on an Autoset will be wasted. With UARS, insurances, either commercial or Medicaid/Medicare (in WA state at least), won't pay for CPAP treatment anyway.