UARS - Not benefitting from CPAP

[jnk...]

Do you still have the trach?

[Okaythen]

I do. Sleep doc says it's post surgery central apnea that occurred with the trach. Sleep was so horrendous I thought I might have to go to the ER. I don't think it's worth trying again. I gave it a good attempt by using it 4-5 nights.

[jnk...]

It is your call, of course. But if it were me, and my doc was on board, I'd try my best to find a way to give that trach the full shot, since that cuts the upper airway out of the loop entirely. Then you can be in a position to troubleshoot whatever else is problematic in order to make sleep (and life itself) much more tolerable.

Bad sleep can have a sedative-like effect for some of us, but that doesn't make bad sleep the better choice. If we aren't used to good sleep, it can feel downright painful at first.

I couldn't sleep longer than 90 minutes for several nights when I first got my apnea treated away. It took me many weeks to be able to learn to sleep 7 hrs going smoothly from one sleep cycle into another. My body had never experienced an uninterrupted cycle before, and it refused to give me more than one a night at first. I spent most of the nights awake after 90 minutes or so of sleep. So technically my sleep was absolutely terrible those first few weeks, going by the number of hours, since I wasn't getting much of it. But someone on this site helped me to see that getting 90 minutes of real sleep without airway issues was better than 10 hrs of "sleep" with airway issues. So I had to adjust how I judged the quality of my sleep: by the quality instead of by the quantity.

So it may be (check with your doc to see if it is true for you) that sleeping an hour and a half using the trach will allow more healing than many hours of "sleep" while not using it. If so, you may feel your sleep is terrible for a while, and you may feel a lot of anxiety that you may need extra help with for several weeks. But if the side-effect of feeling terrible for a while is in conjunction with the fact that your ability to sleep effectively has been restored, all that trouble you go through and have gone through (getting the trach then learning how to sleep with it) may pay off big time in the long run for overall healing--physically, emotionally, mentally, spiritually, etc.

Just a thought from a fellow patient. And I could be wrong. I often am.

[Okaythen]

It's a considerate and thoughtful suggestion. My problem is the fear associated with the absolutely horrendous sleep with the trach. I wear a sleep monitor my doctor co-invented and with the trach it barely showed any waveforms for stable sleep and my sleep quality index was 20 (out of 100). The anxiety I had when I woke up was akin to possibly getting strangled.

I really wanted it to work and do consider trying what you suggest. The only other issue, though, is I lack the support. My doctor was actually very upset with me that I got the trach. He is so insistent that my breathing looks stable on PAP that he couldn't understand why I got it. Duh. Because I'm bedridden, dude, and needed to try something. Anyhow, here's what he wrote in a recent office visit note:

"Unfortunately, he went ahead and got a tracheostomy done despite my strong recommendations against it. Following tracheostomy he slept terribly, possibly due to induction of central apneas. The tracheostomy is now closed, and he is back on his CPAP, but I did encourage him to consider taking it out. This will require a few nights without CPAP, and he is quite worried about that. I reassured him that there is probably no medical risk."

[jnk...]

Unless there is a big problem with hypoventilation, I can't imagine any contraindication for using a trach that is already in place and opting for PAP without giving the trach the full shot. But my knowledge is limited.

If the issues with it are subjective and the anxiety can be controlled, I would try it again. But that's just me. You are you. And your doc is your doc.

I admire your commitment to getting better and wish you all the best with it. You certainly deserve some relief, and I hope you get it.

Thanks for letting me give my comments, for whatever they are or aren't worth in your research.

Keep in mind, too, that with some of us with our sleep-breathing, it isn't always a simple matter of bad breathing causing the bad sleep; sometimes bad sleep shows up as bad breathing. So as important as breathing data can be in figuring out an approach to improving sleep, try not to read too much into it.

I'm cheering for you!

[Okaythen]

I've been suicidal almost every day for the past year because of this. I try not to have expectations and to seek out the best advice I can get. Thanks to this forum and from valuable comments and feedback such as yours, there are moments when I find a little bit of hope. Being chronically ill is strange and a reminder that life is quite precious and that control is an illusion. Thank you for your support. You're more knowledgeable than most doctors I've seen.

[jnk...]

There IS hope.

We control what we can.

You were brave enough to try a trach; many of us don't have that kind of nerve. Hats off to you. I mean that.

My primary doc has very little specific knowledge about OSA, but I keep him in the loop in order to benefit from his broad knowledge. My sleep doc had very specific knowledge and experience, but not as much broad knowledge about how PAP fits around other issues. It took this forum and fellow patients here to help me fit together the pieces into a logical approach customized just for me. That is part of what keeps me here; I feel I have a lot to pay forward.

We all have a lot to learn. I know I do. It's nice to find places like this one where we can all learn together.

[snuzyQ]

Hi Okaythen:

I'm so sorry about your CFS. I had that for 9 years before I was ever diagnosed with OSA. CFS is a rather broad diagnosis. For me, it was very debilitating. I had young children at home at the time and my illness really had an impact on their childhood. They survived, I survived and somehow they became more compassionate adults as a result. This was in 1989 to 1998.

Like you, my CFS was likely caused by post-traumatic stress. It began following a mega prescription of antibiotics for an infection I was battling at the time. My CFS presented with fibromyalgia and much mental fog. My immune system went crazy. I would catch anything so easily, but then my overactive immune system would quell whatever bug I had within 24 and sometimes within 12 hours. I would go through entire illnesses in rev-time. I probably also had undiagnosed OSA all through those years (probably have had OSA for most of my life).

The following contributed to my recovery, which my doctors had indicated would likely never happen. It became apparent to me that stress was keeping my illness alive. It was like a big circle with CFS in the middle and spokes pointing to the stressor points all around. I reasoned that, if I could take this "wheel" apart by removing the stress points, the wheel would collapse and I might recover. So, I set about discovering what all my stressors were. The one stressor that awed me when I found it was that I was so focused on getting well that I was stressing myself bigtime over it. Removing that spoke meant accepting that I might not ever recover and that this was OK. I learned that I was very sensitive to gluten, so I went gluten-free. I learned that I was a control-freak, so I started letting go. In the end, I'd discovered enough stressors and addressed them to the point that I actually started to get better. I still suffer from fibromyalgia from time to time when I'm under a lot of stress. I go through the same process to help myself relax and it really works for me.

The post-traumatic stress needed CBT, a therapist and a psychiatrist for the necessary medications. I needed a mental health team and finally got one in 2015. I'd avoided mental health diagnoses and treatment since 1961 because of stigma. It was such a relief to let that go and realize that it really was ok to live in a world that's filled with stigma over mental health issue. I wasn't going to let that define me. I'm a person in spite of all the above - a person worthy of TLC and I could start by applying that to myself.

The take-home from all this is OSA can have a lot of comorbidities and it's possible to treat them all as one package deal. We don't really get to choose our affliction...it just happens according to our own unique physiology and disposition. Our brains can be such a powerful tool in how it all comes out in the end.

My OSA isn't going to be cured. It may wax and wane, but I'm always going to need CPAP from here on out. It comforts me to know that this is the most effective and least invasive of all the treatments for OSA. I know I'm getting the best there is...and that's good enough for me.

[Okaythen]

Thanks for your story, snuzyQ. That's interesting that you didn't receive treatment for OSA until 2012 and your CFS resolved well before then. I feel my UARS is the driver but maybe it's time to accept that it's possible that I do have comorbid chronic fatigue.

[Cpapian]

Okay then, i was just reading at the Apnea Board, about a different kind of treatment to add on to the xPAP experience.

#1 just to let you know, I only minimally understand it, it's way above my grade level
#2 it was more related to centrals

But,

#3 some of the articles referenced hypersensitive sleepers

So that's why I am mentioning it.

It's called EERS Enhanced Expiratory Rebreathing Space. A board member firefox uses this technique. I can't do links on my tablet, so you will have to do a search over there. There are two published studies and two threads on the topic.

I won't try to explain it in medical terms because I couldn't do it justice. But in girly speak . .... there's a thingy attached to the mask that changes the air composition/balance.

FWIW

[Okaythen]

cpapian, my stupid world-renowned sleep doctor to my knowledge invented EERS. I've asked him about it twice and he just blows me off, doesn't answer my question. Thanks for the info.

[Cpapian]

cpapian, my stupid world-renowned sleep doctor to my knowledge invented EERS. I've asked him about it twice and he just blows me off, doesn't answer my question. Thanks for the info.

It's good to know you are being blown off by the best who wants to be blown off by just any old plain doctor.

Edited to add ....... no wonder I thought of your thread ....... I just reread your earlier posts and notice someone mentioned the high loop whatever.

You should read firefox's thread cause he sounds like you,...... on asv had problems and his sleep doctor, author of the study did the EERS thing. Then he put himself on cpap (ie not using asv as asv) and he's a happy camper now. Maybe you should contact firefox.

[Cpapian]

Okthen

Just wondering, what machine do you have...... I otice you haven't filled out your equipment profile. You should.

The reason I ask is while I was starting out on xpap, I was loaned a respironics. That machine bugged me and woke me up. When it came time to purchase my machine, i went with resmed. It doesn't bug me.

Obviously you are a trooper, being on it for years and not getting any of the "ah, at last" benefits from it. But, I don't think you are alone. There are people who turn up here and don't get benefits from it, members try to help them and eventually they go away unhappy. Perhaps there is another version of OSA that is not fully treated by the machine. But that is just mind wandering. Kind of like how ulcers used to be a thing, then they found they could treat them with antibiotics.

[Okaythen]

Thanks, Cpapian! I have a respironics. I need to do some investigating.

[Julie]

For the record, Respironics has very many models (old & new) out there... you need to be more specific.