New, Severe, Really Concerned

[NewToSleepApnea]

Hello – I am new to this forum but I have been reading it for hours a day for about a week now. I need some help and guidance and it seems like there are some great people on this forum. I believe I have read all the newbie guidelines first before posting. I have started to break down both physical and mentally. I am a 34 year old male from Massachusetts, US and was in good health before this, having a full physical 45 days prior. I was a chewing Tobacco and cannabis user, rarely alcohol, but have stopped all completely since the episodes.

I apologize for this being long but I sincerely need help.

About 10 days ago, I woke up in the middle of the night, and tried to go back to sleep. It felt as if my brain was forgetting to breathe, and I would gasp to wake up right away after falling asleep. This has proceeded to get progressively worse throughout the last 10 days, where I have to sleep on my side at an intense incline to keep my desats from going below 85. Most times I wake up gasping immediately after I drift to sleep, my wife says at times 5-10 seconds after I stop moving. Bottom line I can not sleep without waking up very quickly and having my Oxygen levels drop.

Previous to this I have never had a sleep issue in my life, barely snored, and did not feel over tired throughout the day.

In the past 10 days, I have seen my PCP, Urgent Care, Emergency Room, Cardiologist and Sleep Specialist. Getting Xrays, EKGs, Tested for Covid (Negative), Echocardiograms, and 24 hour heart rate monitors. At first I was told it was just anxiety, after jumping through many hoops I got a at home sleep test that said Obstructive Sleep Apnea. However, the Sleep Specialist was apathetic at best and dismissed my questions fairly quickly, especially in regard to central or complex apnea. He had me at 20 AHI which did not make sense because it felt drastically more severe than other people I know that had up to 70 AHI.

Last night was the first with my automatic CPAP machine. Pressure range is set from 6 – 18. I used it for 10 hours in two 5 hour shifts. The first 5 hours I must have had the mask too loose because the mask fit % was 15%. It had me at 48 AHI.

I adjusted the mask and got the total mask fit of the 10 hours to 52% (so it must have been close to 90%) but my AHI stayed at 42 for the total 1 day reading. I now feel as bad as ever.

I was very optimistic that this CPAP machine would help but 42 AHI with it on for 10 hours has demoralized me. My PCP is trying to get me appointments with more Pulmonologists, and testing for Lyme disease among others.

I also have had bilateral tingling in my hands a little in my feet but I have gotten blood tests 2 months ago, and did not have diabetes etc.

So – the following questions:

1 – Do this sound familiar to anyone? I haven’t met anyone with these types of symptoms. Sudden and severe where I wake up gasping right away?

2 – Has anyone had that high of AHI while on the CPAP machine? I thought it was supposed to drop drastically?

My plan today is to sleep at a severe incline on my side with the CPAP machine and really hope that my AHI number drastically goes down.

Any help is seriously appreciated, I am very frightened of all of this happening in the last 2 weeks.

[palerider]

TL;DR, but

2) if your AHI isn't under *TWO* while on cpap, *it is not working for you* and needs to be adjusted.

[Julie]

This worries me... and I don't want to worry you, but... unfortunately the very occasional Covid test can give false positives or negatives, and from the 'all-at-once' onset of your story to now I wonder about.. well, maybe some other respiratory problem even if, as you said, you'd had xrays, etc. I'd want to do some of those again if you can stand it, and even if you have apnea the fact it came on so fast and progressively is a bit strange.

[NewToSleepApnea]

Thank you for the two replies. I am already extremely worried. I didnt think it was normal to have severe sleep apnea start like this and disrupt my sleep this bad suddenly. And I know the CPAP isn't working, it has only been 1 night but having a 42 AHI is so scary.

Unfortunately all I have gotten from my "Sleep doctor" is, it takes a week to work.

[Julie]

Go back(?) to the ER if necessary and maybe keep from talking about apnea too much just yet... they will be tempted to dump that back on you, but tell them about what you have had done, but that it's not working well yet, and about the fast onset of symptoms - you won't be 'bothering' them as they will be more bothered in time if you do have anything else worrisome that gets worse due to lack of attention.

[Goofproof]

Get and use the Software "Oscar", post the dallies, so people can see whats goung on, guessing leaks are killing your results. Jim

[DreamDiver]

Get and use the Software "Oscar", post the dallies, so people can see whats goung on, guessing leaks are killing your results. Jim

+1

[NewToSleepApnea]

I've downloaded Oscar but having just gotten the CPAP machine, I am very nervous about taking out the memory card, and how to insert it into a computer? I'm not very technologically savvy unfortunately. Most of my experience is breaking things if I mess with them. And I can't afford to break that CPAP machine. I am losing my mind over here with how tired I am. Never had this problem ever.

Even if I nap without the machine, Right as a I fall asleep I can feel myself stop breathing. O2 sats dropping etc. And both my arms have been tingling really bad today with weakness. I'm not a hypochondriac but I'm terrified. The sleep doctor says give it a week.

[Okie bipap]

To remove the card, you simply push in on it and let go. The card will then come our slightly. You can then remove it from the machine. When you put it in the computer, simply push it in. Remove it from the computer the same way you did from the machine. Moving the card to the computer and back will have no effect on the data stored on the machine. Just make sure you return the card to the machine before you use it again.

[Goofproof]

I've downloaded Oscar but having just gotten the CPAP machine, I am very nervous about taking out the memory card, and how to insert it into a computer? I'm not very technologically savvy unfortunately. Most of my experience is breaking things if I mess with them. And I can't afford to break that CPAP machine. I am losing my mind over here with how tired I am. Never had this problem ever.

Even if I nap without the machine, Right as a I fall asleep I can feel myself stop breathing. O2 sats dropping etc. And both my arms have been tingling really bad today with weakness. I'm not a hypochondriac but I'm terrified. The sleep doctor says give it a week.

The card only fits one way, you push it in a little, it springs out a little so you can pull it out, one side has printing on it ahd the card has a 45 degree edge on one corner when its correct it goes in easy, just press it in until it locks in.

The XPAP will still work with the card in. Jim

[NewToSleepApnea]

It’s midway through the 2nd night and I took a break. I’m on a severe incline sleeping on my side. And had a 94% mask fitting. And still had a 46 AHI.

Has this happened to anyone??

5F194EEE-4148-4774-9396-C4F107EA7AD9.png (671 KiB) Viewed 12207 times

[Julie]

Use Oscar and use it according to instructions (what to post and what not, etc.).

[NewToSleepApnea]

Here is the Oscar Graph. From reading on here I don't know why my pressure is so low.

5-10-20.png (102.21 KiB) Viewed 12177 times

[Julie]

Your min. pressure needs to be bumped up by a couple of cms, e.g. to 8 for a couple of nights (without other changes) to see a difference = let us know how it goes.

[NewToSleepApnea]

Julie - thank you so much for your help so far. I am really struggling over here.

I changed my minimum pressure from 6 to 8.

It was supposed to go from 6-18, but it never got over 8 on the Oscar read out. Does anyone know why that is?