UARS APAP treatment question

Hi!

My name is Marton, I am 24 years old and got diagnosed with UARS almost a year ago. I tried CPAP, but couldn't tolerate 4 cm H2O pressure, with a nasal mask. Then I got an APAP but took off mask as I felt suffocated by a range of 4-10 cm H2O pressure. After that i got a mandibular advancement device which is pretty hard to tolerate and I wake up with my tooth and TMJ hurting. I don't feel any better during the days with it and i still wake up after 4-6 hours of sleep as with no treatment (this goes for CPAP too). I didn't try the CPAPs for more than a couple of nights as I was sure that this is something I can never tolerate. I am wondering if I should give it a chance once again as nothing seems to help? I had a DISE (sleep endoscopy) and the report says that everything was fine until they tried to wake me up, when I started snoring, my tongue falled back, severely blocked my airway, same with my tonsils and uvula. This is really puzzling to me because if there is a problem it should have manifested during my sleep not only during the awakening, so I'm not sure I really have airway collapse at all. The doctor says I have overbite and my tongue is too large, and had a deviated septum too that was fixed on the day of the Brexit vote. My tonsils aren't enlarged even though the DISE I mentioned above says they also cause 70% narrowing during sleep (waking up from DISE). I really wouldn't like to use CPAP and would preferably find a cure for my condition (which apparently doesn't exist) but I am at the point where nothing helps and I feel crap and I've got to get in work in a year so I am willing to try anything that helps a bit.

So should I try forcing APAP? Has anyone had similar experiences with tolerating it? I feel similar when you are on a motorcycle and wind blows in your face and it's hard to breathe when I'm on CPAP. I've read that nasal pillows might help.

Thank you for your help.

ps: I also have Hashimoto thyeroiditis which is kind of a must for anyone who has UARS

Your problem is simply that just about NO one can inhale at 4 cm min. pressure - most bump it up to at least 6 or 7 and often (eventually) higher. The max. pressure (20 is the default high) can be left alone if it's already at 15 to 20.

Exactly which brand and model machine did you try to use?

The suffocation feeling is common with a pressure of 4 cm. Simply not enough air moving and while awake that's all you get because the machine won't increase the pressure until the airway tries to close off.

I would suggest trying a 6 cm minimum and using whatever exhale relief your machine might offer to help you out...hence the question about which machine because different machines use different forms of exhale relief.

After diagnosis I got an old CPAP I don't know the exact model but it was a Philips I think. The APAP I got was this one: Remstar Auto A-flex CPAP. I feel suffocated because I can't breathe out against even 4 cm H2O, so it seems weird why higher pressure would solve my problem?

4 cm is the machine default low setting but it's also the one used to INhale at... As was said, if you have trouble EXhaling at high(er) pressures, there's a feature on most machines that will help with that... but you must first try raising the INhale pressure of 4 to even allow you to begin breathing normally, then you deal with exhalation problems (if you still have them).

mrmarci wrote:After diagnosis I got an old CPAP I don't know the exact model but it was a Philips I think. The APAP I got was this one: Remstar Auto A-flex CPAP. I feel suffocated because I can't breathe out against even 4 cm H2O, so it seems weird why higher pressure would solve my problem?

Because the feeling of suffocation isn't necessarily the same thing as "can't exhale against 4 cm". People use the terms as the same thing but they aren't.

Care to try an experiment while awake just to see what happens"?
Set the minimum pressure to 6 cm and go into the clinical setup menu and turn on AFlex exhale relief to 3 and give it a try?

I still don't know which exact model because there are like 4 different Respironics apaps with AFlex.
You can go here and figure out exactly which model it is and request the manual for it and it will explain how to go in and change the pressures and turn on AFlex.

http://www.apneaboard.com/adjust-cpap-p ... tup-manual

If you really truly cannot exhale against such low pressures then you need to be seeing a doctor about potential lung issues.
Babies tolerate 6 cm pressure and more.

I once screened my sister with my apap and tried to start her out at 4 cm and she yanked the mask off in about 20 seconds saying I was trying to kill her by suffocation. We ended up having to use 6 cm starting point for her to be comfortable. I speak from experience here...while there are some people who are okay with 4 cm..most are going to need at least 6 cm to be comfortable.
Heck, even my sleep titration study to figure out pressure needs started out with 5 cm.

Ok, so I got diagnosed by one PSG, then got titrated by another one and my doctor gave me a CPAP to try which was an old one with a set pressure of 4. I couln't tolerate that so I returned it this was at the end of 2016. After this i got a MAD which took about 2 month till I've given up on it. Then in march I got an APAP, which was the one I described with a range of 4-10 cm. I used it for a couple of days, I can fell asleep ok, it's no problem, but usually after 4 hours I wake up to suffocating. It's difficult to breathe out, so I have to take it off. One of the nights I woke up with the mask next to me and I don't remember taking it off. But since the insurance refunds the machine if you return it fast enough I gave up on trying as I thought there'S no way I'll every get used to this. The inspiration was ok, it was that i had difficulty exhaling. So I can't check the exact model, but it was this one on the website where i bought it from: Respironics System One REMstar Auto CPAP Machine

Regarding UARS and hypothyroidism I've read it a couple of places like at Doctor Steven Park: "One interesting study many years ago looked at UARS and its possible association with the somatic syndromes and these include a wide-ranging list of medical conditions like chronic fatigue syndrome, fibromyalgia, hypothyroidism, irritable bowel syndrome and more."

Ah...okay. I understand. You don't currently have access to a machine...is that correct?

It's too bad you didn't come here when you had the machine and were waking up in the middle of the night with problems.
The System One APAP is a full data machine and we could have used the data to look at what was going on in the middle of the night when you woke up with problems. It's not impossible for the panic you felt to have been related to airway closure happening in the middle of the night because the pressure wasn't sufficient. They go up slowly from that minimum. They don't go from 4 to 10 in the blink of an eye.
Instead they take their own sweet time getting up there and they test the airway along the way. We don't know at what pressure the machine was in the middle of the night...might have been 15 for all you know and yes...people do have a lot of trouble sometimes exhaling at those pressures.

The System One APAP...nice machine. I have owned a couple myself over the years.