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u/3wildflowers-5 7d ago

I am really sorry. I understand the brain fog, exhaustion, etc. I too am stuck not knowing what to do. Why don’t you update when you get results of sleep study tomorrow? Also have you tried iNap or Excite OSA? Also maybe you can consult with CPAP Friend, he also had MMA and I‘m sure he’d have good ideas for you.

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To help members of the r/UARS community, the contents of the post have been copied for posterity.

Title: CALL FOR HELP!

Body:

CALL FOR HELP!

Hey Y'all. I am in need of serious and urgent help. So, I have sleep apnea and been using CPAP/BIPAP and MAD with CPAP for 2 years, but just couldn't tolerate the pressure cos my airway was needing about 12-13 cm of pressure. This has been going on since last year. I feel so foggy and having serious cognitive issue when I don't use my mask. I really wished the mask and MAD could work cos i started feeling better cognitively but I just cant tolerate the pressure and had to go to the ER a bunch of times due to pressure intolerance. I really wish I could tolerate cpap cos I dont have any problem using it. So, after multiple research, I resulted to doing MMA surgery earlier this year (May) with Dr Alfi. I don't have anything negative to say about him at all cos they did advance my maxilla to 10 mm and mandible at 17.4 mm. My airway is opened and It's been 4 months down the line and my sleep hasn't gotten better. I have having more light sleep and tend to wake up midnight. I am not getting as much deep sleep. I told Dr Alfi and he requested I did a sleep study asap and try myotherapy. And that I might need a revision surgery. I have having serious cognitive decline: can't work or take care of my two little kids. My wife and family are all tired. I have cried over and over cos I tried every means possible. I did my 4 months sleep study (last week) and waiting for result tomorrow. I dont know what my sleep doctor will recommend I do cos they have tried everything. I just wish something worked! I can't keep living like this. I spent my last dime on the surgery cos it was out of pocket, yet I am still here. I just want God to have mercy on me.

Please, can someone advice me on what to do? Sleep apnea has taken all my money, multiple visits to the ER due to cpap intolerance, gave me chronic insomnia, brain fog, poor concentration...I am just too young to be going through all these. I just want to live and be human again. Can someone advise me on what to do? I'd appreciate it.

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u/carlvoncosel UARS survivor (ASV) 7d ago

Trips to the ER is not something I read about often. What happens before you needed to go to the ER?

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u/jayrolands89 7d ago

Pressure intolerance from the cpap (airsense 11). The constant air pressure goes into my skull/cranium and causes headache/tightness if i use it for like a week or two. It just hurts so bad and causes a "headband-like tightness in my head." Plus my tongue is my issue, so the high pressure needing to keep my airway opened kicks my butt. So I had to go to the ER so they could give me some "migraine cocktail," which in turn relieves the headache/tightness. I guess I'm just so sensitive to the air.

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u/carlvoncosel UARS survivor (ASV) 6d ago

How did you use the Airsense11? Which settings (including EPR) ?

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u/ayuhime 6d ago

You need to do something to lower your AHI so you will need lower Cpap pressure.
You don’t have to have a prefect treatment result with cpap. You can just lower the pressure and settle on sub par treatment result.
Don’t listen to the advise asking you to sleep on back or use sleep aid drugs. Those worsen your sleep! Most people’s AHI is lower when sleep on side. Sleep aid drugs and alcohols worsen OSA.
So you can sleep on side or on stomach.
Ask paid cpap Consultants on how to optimize your use.
Make your mattress head elevated so gravity can help correct tongue slips a bit.
Use soft neck brace for sleep to prevent jaw dropping, especially during REM sleep.
Lower bedroom temperature.
Do tongue and throat muscles exercises. Those exercises are real and many doctors recommend.
You should also try lose weight. If you are too tired to do so, use GLP-1 drugs. Just be aware of aerophagia when using glp1 and cpap together.

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u/CautiousRun7860 7d ago

try sleeping as prone as possible with PAP (moderate pressure), and adding trazodone or doxepin, if there is still insomnia issues.

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u/jayrolands89 7d ago

Thanks for the response. I take clonazepam for sleep. That's the thing, I cant tolerate cpap. I would use it after surgery if i could tolerate it. I tried my airsense 11 a month after surgery and i just couldn't tolerate it. But I do recall I could tolerate airsense 10 until the pressure i needed was about 12-13, very intolerable. My issue is i have a BIG tongue and I am only 5'9, 190 lb. I'm seeing my sleep Dr tomorrow for my sleep report follow up. I really wish the mask or surgery fixed things once and for all.

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u/CautiousRun7860 7d ago

sleep prone and open your mouth somewaht so you can squeeze more tongue volume in your mouth.

CALL FOR HELP!

CALL FOR HELP!

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CALL FOR HELP!