[Treatment] Waking up worse despite multiple changes, life feels awful

[davigalindo]

Hello,

I'm writing a new post because I didn't get much advice in my previous post that I wrote months before, but I feel it's necessary because it was mostly an echo chamber there and I wouldn't get any attention by just updating it. I thank the others who gave me advice back then, and I'm sorry if that's against the board rules but I really need some streamlined information. The previous post was too cluttered. To anyone who's interested and has time to go through a lot of data, you'll find a lot there.

Quick bio: I'm a 27yo (although you would say I'm 87 yo) male, 82 kg. I have sleep apnea since childhood and I had a few surgeries from 14 to 19, but all they did was reduce the AHI from 96 to 40. I have used CPAP since I was 23, reducing the AHI to lower than 5, but I don't feel any difference at all from how I felt before. Indeed, starting last year it's getting worse each day, with classical symptoms that I didn't have before showing up, and the ones I had getting impossible to live with.

In my previous post, some people advised me to up my pressure and add EPR, to wear a cervical collar, to tape my mouth etc. I did all of these things, and even when I managed to solve an issue (such as large leaks), I would get another. Now I wear a cervical collar every night and my pressure is just high enough to keep my AHI low and keep me from cutting my night short with abdominal pain, but I still have a lot of aerophagia, huge leaks, and my life feels like torture. I also don't take meds anymore besides the occasional melatonin tab, but I have a lot of caffeine before 4PM, otherwise I'm not even able to get up and crawl to the couch.

My doctor confirmed that I'm the perfect candidate for jaw surgery and I would probably need to have it even if I didn't have sleep apnea. Apparently, my jaw is too pushed back and my airway is extremely narrow, but no one noticed (and I forgot that I had a small jaw) because I grew a thick beard since I was 20 - it would be comical if I wasn't so tired. However, it doesn't explain why my AHI is low, and I'm getting more confused each day because it feels like my issue doesn't have a solution and I'll have to live with severe fatigue my entire life or die.

Now, I'm not looking for an immediate solution, but rather some speculation on what it could be, or life stories similar to mine. Even though I still use it every night, I have given up on making CPAP work - I just want some peace of mind, especially because the best possibility is that I'll only be able to have the surgery in 6 months, and I honestly feel like I'll lose my mind until then.

I'm uploading just overview data, but if needed I can post more details.

Thanks.

[gainerfull]

What have you done to open up your upper airway? Nose, sinuses, etc?

There is no silver bullet to solving your sleep disordered breathing and it takes commitment to an iterative approach. First step, solve your leaks - considering your profile mentions a nasal mask you're likely experiencing mouth drop and until you solve it, your therapy will not be effective. Each of those leaks is guaranteed to be waking you up without you noticing and is fragmenting your sleep. Standard solutions are mouth tape, chin strap, etc but I really don't understand why people struggle with a nasal mask and don't just try a full face like a Resmed F10 or F20. Simple, effective and no mouth leak.

[staceyburke]

For mouth leak - this is something I read on this site a few months ago. I had bad mouth leaks and NOTHING helped. Fullface mask(s), mouth piece ( both upper and boxing type), taping, dentist mouth appliance to name a few.

I read on site about the “ tongue mouth suck” is what the poster called it. I thought it won’t work but by then I would try anything. The post said it would take several weeks to train my tongue. So while I kept trying all the things I listed I practiced this and lo and behold in a few weeks it did work!!

To practice you just put your tongue on the roof and gently suck the tongue up more to the roof and do it all the time during the day. No body can tell you are doing it but your tongue get use to being on the roof of your mouth. Keep trying it when you go to bed when you wake up at night do it again. All of a sudden you are sleeping the whole night without a mouth leak.

[davigalindo]

What have you done to open up your upper airway? Nose, sinuses, etc?

There is no silver bullet to solving your sleep disordered breathing and it takes commitment to an iterative approach. First step, solve your leaks - considering your profile mentions a nasal mask you're likely experiencing mouth drop and until you solve it, your therapy will not be effective. Each of those leaks is guaranteed to be waking you up without you noticing and is fragmenting your sleep. Standard solutions are mouth tape, chin strap, etc but I really don't understand why people struggle with a nasal mask and don't just try a full face like a Resmed F10 or F20. Simple, effective and no mouth leak.

I tried a FFM and couldn't sleep 2 hours with it, the pressure and the dry mouth were just too much. It also wasn't feasible to pay 700$ (in my local currency, it's a lot) to get one.

I did nose (twice), sinuses, tonsils, adenoids, UPPP... Basically the only thing left is jaw surgery. Even if my septum deviation was still severe, I wouldn't be able to have another surgery without risking complications.

[davigalindo]

For mouth leak - this is something I read on this site a few months ago. I had bad mouth leaks and NOTHING helped. Fullface mask(s), mouth piece ( both upper and boxing type), taping, dentist mouth appliance to name a few.

I read on site about the “ tongue mouth suck” is what the poster called it. I thought it won’t work but by then I would try anything. The post said it would take several weeks to train my tongue. So while I kept trying all the things I listed I practiced this and lo and behold in a few weeks it did work!!

To practice you just put your tongue on the roof and gently suck the tongue up more to the roof and do it all the time during the day. No body can tell you are doing it but your tongue get use to being on the roof of your mouth. Keep trying it when you go to bed when you wake up at night do it again. All of a sudden you are sleeping the whole night without a mouth leak.

I've read about this too, and I think I tried for a while with no success. I'll keep trying.

One thing that I didn't do here was post my flow rate in detail, which I'll do later. I started taping my mouth again, and while it seemed to improve my sleep one night, the following night I felt suffocated. I'm also uncomfortable while using the cervical collar, which I think I'll have to let go because I'm feeling numbness in my fingers that's possibly related to a pinched nerve, and I don't think it's helping in that sense.

Anyway, I only managed to sleep 4 hours, but I'm so beat that I'll try to sleep more without the collar or taping my mouth. My surgeon and orthodontist are debating whether they should anticipate the surgery, and while they are confident that they'll be able to, I'll have a misaligned bite for a while and I'm nervous. It's such an unfortunate situation and the fatigue, depression and anxiety that come with it are unbearable.

[davigalindo]

I have given up sleeping today, it's just extremely uncomfortable.

Last night I slept less than 4 hours with mouth tape and a cervical collar, and I'm still getting large leaks. I'm pretty sure that there's no issue with the hose, at least that's what the insurance said when they did their evaluation. The tape didn't fall off, and the mask was well-fitted. Indeed, when I wear it while using the mask adjustment option that Resmed has, I get the green smile - the leaks seem to be happening only when I'm asleep. So I don't know what's happening.

So I don't have other options except posting my flow chart as it appears during a large leak.

   

By the way, I woke up at 2:30AM, and for the first time the AHI was 0, but I don't think that's useful information if you consider that the large leaks occurred during all the time I was asleep. Further down the chart, there are OAs flagged, but I actually was awake and squirming in bed trying to sleep.

[davigalindo]

So I bought a FFM (DreamWear) last Friday. As of now, I have had no success. Sleeping with it is uncomfortable and I had to play with the settings many times (min. pressure around 12 and 15). Some days I get some leak control, but yesterday I didn't, and I don't know why. I'm wearing a cervical collar. The flow limitations are more visible in the charts now. Friday I had a cluster of hypopneas and RERAs, which I don't know happened because I ripped the cervical collar off (I don't remember), but it scared me a little. The only reason I'm still insisting on therapy is that I don't have another option, but I really would like to make this work.

The flow curves are extremely weird.

And every day I woke up with less than 6 hours of sleep and feeling awful, almost always gasping for air.

   
   
   

[Deborah K.]

I suggest that you raise your upper limit to at least 16. You may not be getting enough air, which can make you feel really terrible. Raising it to 16 won't make your machine blow 16. It will only go as high as you need.

[davigalindo]

I'll do that. Meanwhile I'll keep doing those breathing exercises and maybe search for a certified breath therapist. My anxiety has gone through the roof and I'm pretty sure it's not sleep apnea alone, but hyperventilation syndrome.

[LamanCha]

Hello, sounds awful and really stressful. 

I am definitely not an expert on this stuff or analyzing the data but I can tell you my experience.

I think I’ve had sleep apnea since my early 20s, possibly earlier, and it wasn’t diagnosed until I was in my mid-40s after an afib event. My heart doc gave a sleep test and then prescribed a cpap. It helped a little but I didn’t feel much better. After being a guest on this board a while and trying to optimize my Phillips cpap i was still getting a highly variable ahi, sometimes low single digits sometimes 10-18. Seemed to be completely random. I then got sent to do an overnight sleep study with basically the same conclusion, use a cpap. 

I then started to notice that as I was falling asleep and sometimes during the day I would stop breathing and then gasp for air. 

Conclusion, in part from reading this board, was complex sleep apnea, mostly central sleep apnea with some obstructive SA.

I tried a BPAP and that helped a bit more, I tried one of those belly bands to force a greater exhale and it helped, and then tried doing heavy cardio workouts before bed, like right before,and that helped a lot. 

So now in the last week I’ve found the following works pretty much completely. Zero AHI and I feel much better…
1) Cardio within 2 hours of going to sleep, 60 min biking works for me. I know, it’s almost impossible to work out when you have had no good sleep for a long time, but it works. My hypothesis is this builds the C02 in your body and the off gassing takes place over night. CO2 (mostly) is responsible for triggering your need to breathe, if your trigger setting is off for some reason like mine then the extra buildup helps.

2) BPAP works much better for central and complex sleep apnea

3) Resmed nasal mask with mouth tape. I really like the Resmed headgear nasal mask, nothing works for everyone but that one works for me.

4) I haven’t brought the belly band back in but will do so if this stops working.

I’ve had a string of nights of 6 1/2- 7 1/2 hours of sleep, zero AHI, and feel much better. I hope it continues.

All the best, the solution is out there, and hope this helps.

Peter