UARS suddenly cpap not working

Hi All

I had been suffering from migraines and TMJ since 2008. Finally in 2018 I was diagnosed with UARS. I tried everything from nasal dilators to MAD devices and then I started doing radio and laser therapy on my soft plate and nose (its very narrow and I weigh 56 KG). Anyways finally in September of 2019 I started CPAP- it was like a miracle my migraines went down from daily to like twice a month. my fast heart rate and irritability went away. My pressure was at 5-12. Also I was on Nexium for severe LPR about 40 twice daily. I take melatonin and Claritin but when I started getting better I stopped the Claritin and went down on the melatonin (was feeling still perfect) then went off the Nexium end of November.. In January my symptoms returned full-fledged. I wondered if it was due to the LPR contributing to the apnea or vice versa so went back on it just right now. suddenly nothin is working. I use the4 dreamer pillow tried switching to a full face mask for few days I felt worse and then I switched to nasal pillows which seem to be fine but my symptoms are not goin away. Please help!

What AHI are you getting, and what is the breakdown of AHI to clear airway vs obstructive? Has there been any change over this time?

Hi Sierra I just realized this reply has been hidden! for some reason I can't post any photos but in general AHI is between 1.5 and 2 but I began feeling horrible since January. For example yesterday had 4 flow limitations. 12 hyopneas, 4 obstructive and one VS2. they vary from day to day.

The column is getting a bit narrow, so I will post here. From what you describe it sounds like minimum pressure could be increased some more and the maximum reduced to 10 cm. If you are OK with the minimum pressure higher, you may be best to have a minimum of 9 cm and maximum of 10. However you are probably best to increase the minimum in steps of 1 cm to see how you are liking it. Reducing the max to 10 could be done right away. Just watch that you are not hitting that max very often. It really only needs to be increased if you are hitting it and still having some obstructive events when it is at that maximum.

With increasing minimum pressure you should see fewer flow limitations and fewer obstructive events as the up and down cycle in pressure is reduced.

Hi Sierra

Image upload is now working... I have been increasing the minimum by 1 cm every week. Felt no difference at 7 but a huge difference at 8... almost like a 70% difference... but I still wake up a few times... Now I am thinking to bump it up to 9. My question is about the maximum I haven't really touched it... It seems on three of the days it went up to about 12 but not sure why it never went up to 12 when my minimum was lower. I posted an example of when it goes up to 12- you can see my breathing doesn't seem normal but the machine doesn't really record it as anything... if you see the one dated 26th at around 6am- this is a frequent thing that happens where I wake up and then when I check I see weird lines but no recorded event.. I am assuming I still should take it up to 9 but what should I do with the maximum? keep it as is? Thanks so much!! Let me know if you need any other images...

Hi Sierra

Thanks for all the information. You have a been a true life saver- I hope I can repay the favor! Usually when I turn it off its because I woke up from something with my heart racing... I usually then go back the next day and see if I had an event that made me wake up like that.

I will try to turn off the flex- but the reason that I had turned it on is because I watched Dr. Barry Krakow's youtube video on using c flex for UARS patients. Any thoughts on this?

https://www.youtube.com/watch?v=rOophPt7DxQ

It won't hurt to turn it off though. I will definitely raise it to 9 today and turn off c flex and then see from there..

again, thank you, thank you, thank you

That does help.. I couldn't sleep with it on so I turned it off after an hour of tossing and turning.. Ill try to turn it off again today...also I have been getting really bad aerophagia I woke up with what felt like really bad burping and my mouth was super super dry. It impossible I should it lower it by a half cm or back to 8? or lower the maximum pressure?

Yes I have a ramp I will set it at 7. ill increase it by 0.5 cm every week and see... and ill try the no flex first... thanks so much

On the snoring, my observation is that the pressure needed to stop the obstructive apnea generally is enough to also stop snoring. My wife has some issues with snoring and flow limitations showing up on SleepyHead that are not quite totally controlled by the pressure she uses (ResMed S9). They can be controlled with more pressure, but she does not want to use any more pressure, as it wakes her up. So, I limit the pressure so her AHI scores are very good (averages under 1.0), but it is not quite enough to stop the flow limitation. See the example of her daily report below. Not sure if the DreamStation responds to snoring. Suspect it does to flow limitations though. In short I would not worry about it until you have gotten the pressure up a little higher and your score is better. It will probably go away. Mouth taping generally only stops excessive leakage from air loss through your mouth. It probably wouldn't do much for snoring. Neither would a full face mask. From the reports you have posted I have not seen a high leakage. DreamStation provides two leak rates. The top one included the intentional flow out the mask vent. The bottom one is more representative of the unintentional leak. That is the one to be concerned about.

yea I still can't sleep that well even at the 8 but wow I feel so much better in terms of the migraines and tmj and energy. im sleeping less like 6 hours which is weird that I have more energy but still waking up around 5 or 6 and then can't go back to sleep - I am hoping I will adjust I might take some melatonin in the meantime see if that helps.

Thanks so much for sharing your experience - when do you recommend I raise it more though? I could do 0.5 increments. every week or two by a 0.5 cm maybe? thanks so much its been about 5-6 days on pressure 8. so for April 30th I woke up at 5:45 no idea why... and for the third woke up at 7:06 for no reason... my biggest problem is waking up at around these times and not being able to sleep it happened even before the pressure thing.. I think I am ok at 8 right now in terms of falling asleep with pressure and ramp at 7.5 - the question is do I bump it up a 0.5 for another week perhaps with a ramp at 7.5 again?

will try to turn off flex today and report back soon with results. as for the periodic breathing I just checked it happens like once a month so I am assuming that is ok. I will try to turn the leak feature on I have a Mac so I need to fiddle with it a bit.

Thank you so so much

Hello,

So here are some updates: First I'm not sure if am reading my charts correctly... for example on this May 8th (see attached) I had four or five hyopneas in a row (5 am)but pressure was at 9.6 so I am wondering does this mean I still am not at the ideal pressure…. Also between 12:30-1:30 barely had anything pressure was at 10 I am assuming is this why? I want to know if my readings are correct…. I went back on Nexium on May 8th I highly suspecting my GERD is not helping at all …. the headaches magically disappeared since going back on the 40 mg dosage.. I still have symptoms though but the headaches went down significantly... I also couldn’t handle the c flex off but I might try going down to tonight and see if I can handle it…. Its either do that or try to go up from 8 to 8.5 - I think tonight I will turn off the c flex or increase to 8.5 ... Now the problem I am facing is on the 9th and 10th I didn't use the Cpap because my eyes were so dry I felt like my eyes were gonna crack open and my forehead was all irritated - so I used my MAD device instead... was ok first day but second day a bit of jaw popping... I made sure last night I slept without a pillow in front of me are anything that could direct air back into my face... but my eyes are bad again tonight... I thought bringing pressure down from 8.5 to 8 would help but it didn't.. I am gonna switch to my nasal pillow tonight instead of y nasal cushion and see if that helps but im also suspecting that im opening may mouth (is this possible considering I don't have significant leaks) was thinking of taping my mouth to see if that resolves.... I just have this feeling the cpap isn't recording my mouth leaks.. also on the 12th I have this stopping breathing thing which is quite odd.... - I uploaded a close up of the flow rate im suspecting mouth breathing...

Thanks so much !

Oh ok I had no idea I could choose the mask type I'll figure that out tonight and slowly raise pressure ... thanks so much you have been a life saver...

If you are still getting the migraines you might want to have your 02 levels checked while you sleep, your Dr should be able to provide a study order. I was told my headaches in the morning were because of my lack of oxygen at night. My sleep study showed me down to 63%. CPAP only raised it to 80%, and anything below 88 is a problem. They added supplemental oxygen to my CPAP and wow that made a world of difference for me. I now wear a Garmin Vivoactive 4 watch to sleep, it seems to be 1 to 3 points lower then a finger unit, but I now at least know when I go below 90% on my o2 levels. I turned my oxygen up to 2.5 and now my o2 rarely ever goes below 90 at night. The sleep information is interesting, the fitness stuff seems to be motivating me, but it will track my 02 levels the entire time I am sleeping and does not disturb me like the finger units do. Only 2 garmin watches will track all night. Beddrsleep has a device you tick you your forehead for $149 that tracks sleep data and O2 levels, only works with an iphone but is supposedly very accurate, and is trying to be approved for use in sleep studies since it tracks everything a home study tracks, but a lot less invasive. When they add android sometime this year I might get one. There are many good units you where on your fingers, but they prevented me from sleeping well which defeats the purpose and they lack the sleep data like movements, rem vs non rem sleep etc.. Good sleep data to match up to the CPAP data seems good to know.

hi Bigfootbitme thanks I will look into that.....

Sierra and (others) I have finally reached 9.5 but for some reason with the 9.5 last night I slept for ten hours and dreamt a lot which is weird because I never sleep that long but I woke up like at truck hit me (have been feeling horrible last few days even at the 9) - I thought I slept well but woke up feeling like a truck hit me... my throat is swollen from all the acid being sucked up even though I'm on Nexium... not sure where to go from here... I did switch from my nasal pillows to a cushion the pillows were bothering me... im wondering if that's the case even though I felt more comfortable with the cushions.. Also had two periodic breathings not sure if I should be worried I took a screenshot.. thank so much for your time!

It is certainly not obvious that you are benefiting from the 9.5 cm minimum over the 9.0. I also see some CA events showing up. My thoughts would be to go back to the 9.0 minimum and perhaps a 10.5 maximum. I would try that for a week or so to establish an average which will be recorded in the Statistics tab. Then you may want to try try the Flex to see if it helps or hurts. I would go for the maximum Flex (3?) so the difference will be more obvious. When you set the 10.5 maximum you should check to see if there is any persistent pattern of events occurring when the pressure is limited to 10.5. If there are then it could be bumped back up a bit.

On the Periodic Breathing, that does not look like classic CSR. I would not worry about it unless it becomes persistent. CSR would have CA events between each breathing pulse, not OA.

The whole series of flow limitation events when at 12 cm pressure makes me wonder if you are having some head positional issues. Some claim significant benefits from using a soft cervical collar to keep the neck straighter during the night. You can get them at Walmart for $15 or so.

On switching mask types I have noticed some differences in that some masks seem to need more pressure to get the same results. I suspect that they really don't need more pressure, but the machine indicates that the pressure is higher. These machines do not measure pressure right at the mask, only in the machine. They only estimate mask pressure based on theoretical pressure drop calculation for the loss in pressure from the machine to the mask. So the bottom line is that in my experience anyway, a different mask design can change the required pressure that is indicated. It is a good idea to settle on a mask type and keep that part consistent during your testing for the optimum pressures.

Ok thank you I will try that out for a week and will try to stick to either the nasal pillows or cushion! Thank you! as per the neck position im not sure where I can get a cervical collar but ill try to find one once the corona thing dies down....

HI Sierra, thanks for your life saving advice! so its been a week I stuck to one mask and it seems that with this new pressure my numbers have reduced dramatically also have been sleeping longer- however I am still clenching away and waking up sometimes with burping and gas (only once in the middle of the night) I also still wake up with a headache and jaw clicking but do have more energy and feel better.... I am wondering though if I reduce it to 8.5 will it maybe solve the bloating/burping issue and maybe just to compare for a day or two if the 8.5 is better after reducing the maximum pressure... I am also getting at least one central showing up a day and I had another PB yesterday.... Do you think I should try it out for a few days.... I attached my weekly overview...... the numbers are better and I think I am sleeping more which is a good thing but was thinking for comparison and maybe to reduce the CA's maybe try it out for a few days? I still haven't played with epr at all .... let me know if you need to look at anything else.... Also my other suspect here in not feeling 100 percent (but thankfully feeling better) is maybe my LPR/GERD is playing a role (im on Nexium twice a day) I would be curious to know if it does affect apnea.... I have read that it has but no one knows which came first the chicken or the egg.... I also didn't know how to read what you said about if there is any persistent pattern of events occurring when the pressure is limited to 10.5-I wasn't sure how to read that... Thank you so so so much!

Hi Sierra

I am starting to feel horrible again... I couldn't handle the bloating at 9 and my migraines and TMJ are back - I always wake up with a heart racing as well I am assuming from the obstructions for UARS .... the last two days I reduced the pressure from 9 to o8.5 due to all the bloating (all though it could really be my GERD and IBS flaring up and nothing to do with pressure I might try to goo back t that..... I felt good the first day after reducing to 8.5 and today feel bad again.... Iam keep thinking maybe I should try increasing the pressure to o12 again and see how that feels with the 8.5? I am not sure - also the heart racing is scary but in the past I have done tests and there was really nothing wrong with my heart....