Stopping breathing while awake

[Rubicon]

I was happy to be turning 50.

What, you don't look a day over 40!

Most wake central apneas are from things that are catastrophic, and since you're posting you ain't got them.

If you're a flatlander and suddenly go visit colomom you'll have central apneas for a couple days.

Take a bunch of deep breaths and you'll have a compensatory central apnea. Look in your CPAP downloads, you probably have some of these.

[robysue1]

This is very humiliating, all of it.

Repeat after me: None of my health issues are humiliating. They do NOT define who I am.

In all seriousness, it is a major, huge blow to the ego to suddenly realize that you've got multiple health conditions and that they seem to have come out of nowhere. I've been there, done that, and have the scars to prove it. When I was first diagnosed, I was just past my 52nd birthday and OSA was literally the first chronic health condition (other than migraines) that I had to deal with. And all of a sudden I went from thinking of myself as a reasonably healthy, active 50-something woman to thinking of myself as an invalid. It didn't help that the existing migraine problem went critical and I had to start taking daily medication to keep the migraines under control. And then I was diagnosed with glaucoma, and I don't deal with eye drops every well. And yeah, I had plenty of pity parties when all this was happening, including some here at cpaptalk.com. Sometimes it helps to admit up front that you're holding a pity party for yourself because you just need to vent and you don't really want suggestions on how to fix things in that particular thread. You can even mark the pity-party off topic (OT) if you want to make sure that folks know you're not looking for help in that particular thread.

Funny thing was, though, until I was through with the venting and being angry at myself for suddenly becoming an invalid, it was hard to do the work to make myself feel genuinely healthy again. (And today I no longer think of myself as an invalid.)

Heck, I was so deep into self-pity about my multiple health problems that I even went to therapy for a while. The therapist did help me understand that I alone could control what I thought about myself. And that I needed to not let the health problems define who I thought I was. He also helped me understand that I needed to not define my sense of worthiness solely in terms of "being healthy" and that I really was the same person I had always been before the health problems started creeping up.

And I'm telling you all this so that you can understand you're not alone in how you're feeling right now: Others really have experienced the same kind of things that you are dealing with, including the sense of shame or humiliation that you are currently dealing with.


My advice is to first of all not be so hard on yourself. Seriously---don't worry about looking like a "Stay-Puff woman" if you know that you are working with your medical team to manage the health conditions to recover your health.

My second piece of advice is to make time for yourself to do something that is genuinely relaxing for you every day. Yeah, I know you're overwhelmed with all the changes and with managing the kitties as well as preparing for your mom to move in, but you will feel better about yourself if you find even just a few minutes a day to do something that allows you to simply stop all the work and all the worrying that your health issues combined with the big changes in your personal life that are going on. Take a bit of time to consciously not worry about anything.

You also write:

I guess I'm a little sensitive because all of these health issues I'm experiencing are coming as something of a shock. Two years ago I was riding my bike for 10-20 miles a day and really enjoying working from home. My son was away at college on a scholarship and I felt I finally could live my life for myself a bit. I was happy to be turning 50.

Get the bike back out and try to get a short ride even if you don't feel like it. Even if you only spend 5 minutes on the bike, that 5 minutes may be one of joy that will help you start regaining your sense of who you think you are. Allow yourself to find ways to "live your life for yourself" for a bit every day.

So I really don't like being patronized. I know people are trying to help. I really do. It just is all a bit hard to take right now.

No one likes being patronized. And it's worth pointing out when you do feel that way, but at the same time, do remember that you know we're trying to help.

I'm trying hard to not come across as patronizing specifically because I spent so much of 2010-2012 feeling like I was being patronized by every doctor who was treating me at the time. And yes, there were times I felt patronized by a few of the posters here at cpaptalk.

I sincerely apologize for being touchy.

No need to apologize in my opinion: You've got a lot on your plate and you are trying to make this work for you. You also have other health issues that need to be dealt with before you'll really start feeling better. And you're trying to do all this work on taking care of your own health issues when there are other major stressors in your life as well.

[KittyMom22]

Oh, is colomom in CO? I wondered what that meant.

[lazarus]

Oh, I get it now.

I thought she was just a big fan of colonoscopy.

[colomom]

Oh, is colomom in CO? I wondered what that meant.

Yes I live at 7000 feet in beautiful Colorado. I am fortunate, people travel from all over the world to visit the spectacular mountains I call home:)
When I first joined this forum it was to seek advice to help figure out OSA which was one of what turned out to be one of many issues plaguing my medically complex son, hence the user name colomom. I also later learned that I have OSA as do a number of other of my family members, this forum has been very helpful to all of us.

I’m sorry that you’re going thru all that you are and i applaud you for holding it together when life has thrown you so many curve balls. I hope you will stop beating yourself up. You have a complex, not well understood medical problem and that isn’t your fault. It’s not surprising that you’ve put on a few pounds considering you have long COVID. Hopefully your new pulmonologist can find better treatments for your asthma and perhaps with some time you might even get used to the CPAP machine. Our brains need both O2 and sleep, getting more of both should help with the brain fog.
I hope your doctors aren’t feeding your negative feelings, if they are find new doctors. One of my son’s health problems is dysautonomia/ POTS, which I understand some long haulers also have to face. Unfortunately we had to deal with a number of dismissive, arrogant doctors before finding the brilliant gems who helped my son get his life back, if you haven’t found them yet keep looking for those gems.

Lastly of course when taking care of your mom and others don’t forget to take care of yourself!

[colomom]

Untreated OSA can worsen asthma because it can cause increased inflammation in the airways.
An interesting experiment could be to use a peak flow meter first thing in the morning after using your CPAP to see if you are able to see improvements from using your CPAP.

Yeah, no.

I suppose I should add if you don’t see a change when using the peak flow meter it in no way means that the CPAP isn’t working.
If there is a noticeable improvement as there could be, it could be another motivating factor to stick with trying to adjust to using CPAP, I don’t see any harm in trying it.

KittyMom’s description of being tired by the effort of breathing with asthma screams that her asthma likely isn’t well controlled. A peak flow meter combined with a diary can help better understand her asthma triggers. Not sure why you seem to think her using a peak flow meter is a bad idea.

[lazarus]

live at 7000 feet in beautiful Colorado.

Worst AHI I ever got in my life on bilevel was at a motel in Estes Park.

[colomom]

live at 7000 feet in beautiful Colorado.

Worst AHI I ever got in my life on bilevel was at a motel in Estes Park.

Not surprised, our thin mountain air can be rough. Hopefully the time spent in Estes was worth having to sacrifice a few nights of sleep;)

[lazarus]

live at 7000 feet in beautiful Colorado.

Worst AHI I ever got in my life on bilevel was at a motel in Estes Park.

Not surprised, our thin mountain air can be rough. Hopefully the time spent in Estes was worth having to sacrifice a few nights of sleep;)

Definitely!

That elevation on bilevel caused me a lot of central-like pauses at night at the time. But for this Appalachian hillbilly who has been performing John Denver songs since childhood, I found myself absolutely blown away by most everything I saw and experienced in that especially beautiful part of the country.

As Mr. Denver would say, it was "Far Out!"

I did OK during the day with elevation, even driving and hiking around over the top. But I made sure I was well hydrated for several days beforehand. And as a flatlander who was living at sea level in Brooklyn at the time, I didn't spend much time at the higher elevations in the Rockies, just in case it didn't agree with me.

[Janknitz]

I have cough variant asthma, so I normally don't get what most people refer to as an "asthma attack" (unless you count the uncontrollable spasmodic coughing when I have a bout of asthmatic bronchitis). But I did have ONE incident, trying an unfamiliar high intensity exercise, my airway closed. No air in or out. I was alone and had to decide "inhaler or 911?". I wasn't sure I could get the inhaler into my airway, but I guess by the time I grabbed it in the other room the must have been some movement because it helped. That was terrifying, and it did sort of feel like when I wake up during an apnea, especially before CPAP when I also had reflux. But when sleep apnea brings you to enough consciousness you can take a breath (hopefully without sucking stomach acid into the lungs!). With an asthma "attack", you cannot move the air in or out easily--I've heard people say it's like trying to breathe through a coffee stirrer straw. Asthma airway issues are NOT the same as apnea, but the sensations can be similar.

The rescue inhaler and long acting medications can help asthma, they don't work for OSA. Your airway can still obstruct during sleep because there is mechanical obstruction of the airway , even after using your inhalers. CPAP certainly helps my asthma by giving me clean, humidified, and filtered air to breathe all night, and by reducing apnea it also reduces reflux, which inflames my airways, which exacerbates my asthma, and so on. But CPAP does not TREAT my asthma. It won't relax the muscles clamping down on my bronchioles, and it won't reduce the inflammation in my airway once its there. Different causes, different treatments.

As others have said, if you feel like you stop breathing while awake because you cannot move air in or out, use your rescue inhaler right away, and talk to your doctor about your asthma control and what can be done to make it better. Consider there may be asthma triggers in your environment, and--at the very least--the filtered air from the CPAP might help that at night. I know when my asthmatic bronchitis is at its worst, I actually feel better on CPAP and I can sleep. Before CPAP I would just have to sit up in a chair coughing my lungs out and not sleeping for days until the asthmatic bronchitis started to subside. My coughing is very much reduced on CPAP--a blessed relief.

Your anger and frustration about all the things in life you don't have control over is understandable. When I was diagnosed with OSA, I went through those stages of grief and had a lot of anger, and I was only dealing with one thing. And starting over with a new doc is no fun. But you might prioritize addressing this, even if everything else on your plate is screaming for your immediate attention. Like in an airplane, you have to put your own oxygen mask on before you can help anyone else.

[Rubicon]

I did OK during the day with elevation, even driving and hiking around over the top. But I made sure I was well hydrated for several days beforehand. And as a flatlander who was living at sea level in Brooklyn at the time, I didn't spend much time at the higher elevations in the Rockies, just in case it didn't agree with me.

One of my kids lived in SLC Utah. Visiting one time I was just lying in bed and noticed I was periodic breathing. You can imagine being in the business how interesting it was! Did a run at about 4400 feet elevation and didn't notice any difference. I think it was because my lung function is about 125% of predicted.

OTOH, on Aiguille du Midi. needed to pause after climbing a single flight of stairs.

[Rubicon]

Not sure why you seem to think her using a peak flow meter is a bad idea.

I didn't say it was a bad idea.

AAMOF it's a good idea. A great idea. It's mandatorier than using Oscar to monitor SDB.

However, using peak flow to monitor CPAP won't reveal anything. It's like using OSCAR to monitor asthma. Apples and aardvarks.

PEFR will be low in the AM as the body's natural protection mechanisms take a dip at about 4 AM and effect of any drugs the patient is on will have largely worn off.

That said, we may be able to track the effect of asthma exacerbation through a change in the expiratory flow curve, and disruptions in sleep, by looking at waveforms, but OP has stated she doesn't wish to reveal that.

[Rubicon]

... but OP has stated she doesn't wish to reveal that.

Which is kinda too bad. With what she got ("alternate overlap syndrome"), CPAP may help with OSA managment. It's conceivable that using Oscar to monitor the aardvark could reveal some esoteric stuff.

BTW KM22 do you/did you smoke?

[Rubicon]

This is very humiliating, all of it.

Repeat after me: None of my health issues are humiliating. They do NOT define who I am.

That sums it up.

Every day we get a bucket of challenges. We all get a bucket of challenges. Maybe you got a lot more stuff in your bucket than most people but that's the hand you've been dealt.

Lis...en:

Do not waste valuable time and energy worrying about the stuff in the bucket that could otherwise be spent fixing the stuff in the bucket. Steel up and get positive.

[KittyMom22]

Regarding elevation, I have friends who live in Grand Lake, CO. I visit them about once a year but was unable to go because of the pandemic. So this August I was really looking forward to seeing them and hiking again.

It was awful. I was short of breath all week, couldn't sleep, could barely walk around town. Didn't even go up to Adams Falls, which is such a mild trek people take their young kids with them. It happened my friends were recovering from their second bout of Covid and were feeling equally unathletic, but it was such a disappointment that I came home and told my doctor I wanted to try CPAP.

I told him one solution to the problem is just don't visit Colorado but I'm not ready to accept that solution!