Upper Airway Resistance Syndrome (UARS)

I just got diagnosed with Upper Airway Resistance Syndrome (UARS). I do not have sleep apnea. (My AHI was normal, no O2 desat, but RDI was extreme).

Are there any other UARS patients on these boards? I've read some about it, and the treatment options are different than for OSA. My doc still recommends CPAP, but I've read that many UARS patients can't tolerate it, and that alternative treatments can be effective (Breathe Right strips, for instance). Does anyone else here have experience with that?

MamaGeek wrote:I just got diagnosed with Upper Airway Resistance Syndrome (UARS). I do not have sleep apnea. (My AHI was normal, no O2 desat, but RDI was extreme).

Are there any other UARS patients on these boards? I've read some about it, and the treatment options are different than for OSA. My doc still recommends CPAP, but I've read that many UARS patients can't tolerate it, and that alternative treatments can be effective (Breathe Right strips, for instance). Does anyone else here have experience with that?

Hi MamaGeek,

I wasn't officially diagnosed with it since UARS seems to be a foreign language to my sleep doctor. But I definitely have the profile as my 11/14 sleep study resulted in a 23 RDI with a 5.9 AHI.

Unfortunately, I have not succeeded with PAP therapy and am in the process of arranging a sleep study to guide my decisions as to how to proceed. But if many people with UARS have found pap therapy helpful so it still might be worth a shot.

What is tricky about having UARS with pap therapy is you really can't go by AHI and have to go more by feel. If possible, I would ask for a prescription for this device, AirSense 10 AutoSet for Her, since it is supposed to respond to UARS issues. Members on this board can help you fine tune the therapy to find the best range.
I would give it about 6 months and then reevaluate where things are.

Best of luck.

49er

Yeah, reading about UARS online, I saw over and over that sleep centers don't all test for it, and sleep physicians don't all know about it, and so people go undiagnosed, even though the symptoms can be the same, or even worse, than with OSA.

Thanks for the tip about the equipment. I'll definitely bring that up with my doctor at my follow-up appointment!

MamaGeek wrote:Yeah, reading about UARS online, I saw over and over that sleep centers don't all test for it, and sleep physicians don't all know about it, and so people go undiagnosed, even though the symptoms can be the same, or even worse, than with OSA.

Thanks for the tip about the equipment. I'll definitely bring that up with my doctor at my follow-up appointment!

MamaGeek,

What is strange is the sleep center I went to did test for RERAs using a nasal pressure inducer which from what I understand isn't the gold standard but is a pretty decent way of measuring them. The interpreting sleep physician in the scoring explanations said that an RDI > 5 may be suggestive of UARS. Go figure.

Good luck with your appointment.

MamaGeek wrote:I just got diagnosed with Upper Airway Resistance Syndrome (UARS). I do not have sleep apnea. (My AHI was normal, no O2 desat, but RDI was extreme).

Are there any other UARS patients on these boards? I've read some about it, and the treatment options are different than for OSA. My doc still recommends CPAP, but I've read that many UARS patients can't tolerate it, and that alternative treatments can be effective (Breathe Right strips, for instance). Does anyone else here have experience with that?

I am a UARS guy. I just found out why I don't respond to CPAP therapy even though I can tolerate high pressure without any issues. The reason is I have a floppy epiglottis and the epiglottis will fold back to the airway wall to obstruct the airway.

Here are video and article for the condition. CPAP will not treat it and actually make it worse due to the anatomy of epiglottis.

https://www.youtube.com/watch?v=VXgpLooNiGo

http://www.sleep-doctor.com/blog/the-ep ... eep-apnea/

I have a surgery scheduled in two month to remove part of the epiglottis and will report back the result.

musculus wrote:

MamaGeek wrote:I just got diagnosed with Upper Airway Resistance Syndrome (UARS). I do not have sleep apnea. (My AHI was normal, no O2 desat, but RDI was extreme).

Are there any other UARS patients on these boards? I've read some about it, and the treatment options are different than for OSA. My doc still recommends CPAP, but I've read that many UARS patients can't tolerate it, and that alternative treatments can be effective (Breathe Right strips, for instance). Does anyone else here have experience with that?

I am a UARS guy. I just found out why I don't respond to CPAP therapy even though I can tolerate high pressure without any issues. The reason is I have a floppy epiglottis and the epiglottis will fold back to the airway wall to obstruct the airway.

Here are video and article for the condition. CPAP will not treat it and actually make it worse due to the anatomy of epiglottis.

https://www.youtube.com/watch?v=VXgpLooNiGo

http://www.sleep-doctor.com/blog/the-ep ... eep-apnea/

I have a surgery scheduled in two month to remove part of the epiglottis and will report back the result.

Interesting. I don't think that is my issue because I don't have the sensation of choking on the VPap but who knows?

Lots of luck with your surgery and I look forward to hearing how you made out.

49er wrote:

musculus wrote:

MamaGeek wrote:I just got diagnosed with Upper Airway Resistance Syndrome (UARS). I do not have sleep apnea. (My AHI was normal, no O2 desat, but RDI was extreme).

Are there any other UARS patients on these boards? I've read some about it, and the treatment options are different than for OSA. My doc still recommends CPAP, but I've read that many UARS patients can't tolerate it, and that alternative treatments can be effective (Breathe Right strips, for instance). Does anyone else here have experience with that?

I am a UARS guy. I just found out why I don't respond to CPAP therapy even though I can tolerate high pressure without any issues. The reason is I have a floppy epiglottis and the epiglottis will fold back to the airway wall to obstruct the airway.

Here are video and article for the condition. CPAP will not treat it and actually make it worse due to the anatomy of epiglottis.

https://www.youtube.com/watch?v=VXgpLooNiGo

http://www.sleep-doctor.com/blog/the-ep ... eep-apnea/

I have a surgery scheduled in two month to remove part of the epiglottis and will report back the result.

Interesting. I don't think that is my issue because I don't have the sensation of choking on the VPap but who knows?

Lots of luck with your surgery and I look forward to hearing how you made out.

Thanks 49 er. I don't have the choking feeling either. You need to be a severe case to have that kind of feeling.

One easy way to test is trying to breathe in forcefully with tongue sticking out and jaw and neck muscle relaxed. If you can make snoring sound or feel the blocking of the airway, then you might have a problem with the epiglottis.

musculus wrote:

49er wrote:

musculus wrote:

MamaGeek wrote:I just got diagnosed with Upper Airway Resistance Syndrome (UARS). I do not have sleep apnea. (My AHI was normal, no O2 desat, but RDI was extreme).

Are there any other UARS patients on these boards? I've read some about it, and the treatment options are different than for OSA. My doc still recommends CPAP, but I've read that many UARS patients can't tolerate it, and that alternative treatments can be effective (Breathe Right strips, for instance). Does anyone else here have experience with that?

I am a UARS guy. I just found out why I don't respond to CPAP therapy even though I can tolerate high pressure without any issues. The reason is I have a floppy epiglottis and the epiglottis will fold back to the airway wall to obstruct the airway.

Here are video and article for the condition. CPAP will not treat it and actually make it worse due to the anatomy of epiglottis.

https://www.youtube.com/watch?v=VXgpLooNiGo

http://www.sleep-doctor.com/blog/the-ep ... eep-apnea/

I have a surgery scheduled in two month to remove part of the epiglottis and will report back the result.

Interesting. I don't think that is my issue because I don't have the sensation of choking on the VPap but who knows?

Lots of luck with your surgery and I look forward to hearing how you made out.

Thanks 49 er. I don't have the choking feeling either. You need to be a severe case to have that kind of feeling.

One easy way to test is trying to breathe in forcefully with tongue sticking out and jaw and neck muscle relaxed. If you can make snoring sound or feel the blocking of the airway, then you might have a problem with the epiglottis.

Thanks, I just tried it and don't feel a blocking of the airway.

I have a lot of Floppy Bits, but apparently my Epiglottis is OK

TangledHose wrote:I have a lot of Floppy Bits, but apparently my Epiglottis is OK

good for you guys. This is not common. some say 1 in 10 SDB people.

done

I was recently diagnosed with RERA/UARS. I just started with my BiPAP machine Monday night. It's too soon for me to tell if it's working. I had episodes 29.9 times per hour. I also have PLMS at 14.5 times per hour, didn't even realize I had an issue with leg movement. Just knew I didn't sleep well and always tired.

Thanks Avi123. Here is a link to the article:

http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3

avi123 wrote:There was an article about UARs in the Chest website from 2011 authored by the following:

Olukayode Ogunrinde, MD; Herbert J. Yue, MD; and Christian Guilleminault, MD.

Dr. Ogunrinde is Clinical Fellow, Department of Sleep Medicine, Stanford University; Dr. Yue is Clinical Fellow, Department of Sleep Medicine, Stanford University; and Dr. Guilleminault is Professor, Division of Sleep Medicine, Stanford University Medical School, Redwood City, California.

These persons are the top U.S. experts in the field of UARs. When the article was first published in Chest Journal there was free access to it. But later they made it available only to subscribers.

I had a post here with some excepts from that article. But no one paid attention to it. It has been happening that some one asks about UARs every 6 months or so. May be next time I will have more success.

49er wrote:Thanks Avi123. Here is a link to the article:

http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3

Thanks! Great informational article!

musculus wrote: I am a UARS guy. I just found out why I don't respond to CPAP therapy even though I can tolerate high pressure without any issues. The reason is I have a floppy epiglottis and the epiglottis will fold back to the airway wall to obstruct the airway.

Here are video and article for the condition. CPAP will not treat it and actually make it worse due to the anatomy of epiglottis.

https://www.youtube.com/watch?v=VXgpLooNiGo

http://www.sleep-doctor.com/blog/the-ep ... eep-apnea/

I have a surgery scheduled in two month to remove part of the epiglottis and will report back the result.

I'm in a similar situation and had some questions:

1. Did a DICE show epiglottis collapse?

2. If so, was it accompanied by posterior displacement of your tongue?

3. Who is your surgeon and why did you settle on a partial epiglottidectomy vs epiglottopexy?

You may want to watch this video:

https://www.youtube.com/watch?v=SK6cfAnCvoY

The conclusions are the exact opposite of what the director of sleep surgery at Stanford told me which is odd since the video was made by his department.

It seems like epiglottis treatment is still in its infancy. Hence, all the conflicting advice...