u/Dlgallian

I got my CPAP in May, waited a week for an appointment showing me how to use it, and then immediately went away on an international trip for three weeks. I told my doctor that I was not going to take it with me on my trip since it was so new and I didn't want to be fussing with a new device on my trip, and they assured me it would be fine for my compliance. I also had many nights where I ripped it off mid-sleep, or had so many leaks that it was waking me up too much, etc. Other little things - power outage, leak issues, unexpectedly having to go out of town, etc. have meant that there have been several nights where my usage was less than 4 hours. But I persevered and now I have the settings dialed in to where my AHI is less than 1 and my flow limit is very low. I got an SD card, learned how to upload and interpret my data in sleep HQ, even check my Glasgow index (usually around 1.15 so okay but not perfect). In other words, I'm on a roll and its working decently well. Today I got a call saying that my 90 day compliance window is over and I've failed. I needed to be at 70% compliance and I'm only at 57%. They blame it mostly on my lack of compliance in the beginning when I was waiting for my first setup appointment/away on my trip, which my doctor gave me permission to do.

I mean, WTF? Why are they punishing me for three grueling months of trying to make this work? What is wrong with our system that stupid misunderstandings/administrative rules and making it so that they are taking away a device that is actually working for me? I just can't understand. They told me that they had to take it away and that my doctor can re-prescribe so I can reset my compliance period. Jesus. Is there nothing on this journey that is easy??

Before last weekend I was doing really well. I primarily suffer from orthostatic hypotension but have other little dysautonomia symptoms as well. My OH was being managed very well by fludrocortisone and I was exercising and having decent energy. This past weekend was a doozy - my aunt died unexpectedly, lots of family drama with my mom triggered by my aunts death, and we had to rush my beloved dog to the emergency pet hospital (90 minute drive away at 10 pm). (The dog is fine now). The day afterwards, I couldn’t stop shaking and my back was killing me (one of my primary OH symptoms). I was a wreck. And since then it feels like the fludrocortisone isn’t doing its job in the same way - I’m having OH symptoms again and I’m exhausted and can’t exercise. Has anyone else experienced a bad flare from emotional stress? How long until you felt better? Was there anything you did to help your recovery along?

I have an Airsense 11 with current settings at min 7 max 10, EPR set at 3. Upping the min pressure to 7 has helped with flow limitations, but my glasgow index is stuck (last night was 1.13) driven by top heavy breaths. The only info I can find on how to adjust settings are based on adjustments that I see are only available on a bipap. Anything I can do on a CPAP? I'm still trying to understand exactly what causes a flat top breath, so thanks for any insight!

I feel like my sleep doctor is getting in the way of my actual resolution of my UARS but at the same time I’m dependent on the clinic for continued coverage of my device. I got my CPAP in early June and have resolved AHI (which were minimal to begin with) but still have plenty of minor flow limitations throughout the night.

I had an appointment yesterday and she proclaimed that everything looked great because my AHI is close to zero and my leak rate was within tolerance. She even said that my diagnosis wasn’t based on AHI but on RERAs, so I’m not sure why she’s focused on AHI now. She lowered my pressure rx (range 4-8). She also discouraged me from collecting and analyzing my own data on an SD card because she said the MyAir app had enough data. It seems like the data view she has access to had a lot more info than what I can see on the app, which is extremely limited.

She wants to see me again in two months. I want to disobey her rx and adjust my settings to try to overcome my flow limitations but I know she will criticize me when we meet again. I know lots of you have gone rogue - how did you do this and not fight with your doctor the whole time? Or maybe you did and you just have more guts than me?

I’m fairly certain that my flow restrictions are retropalatial and/ or retroglossal, not in my nose. I have a severe tongue tie at the back of my tongue and small upper and lower jaws (in both directions- width and length). I’ve been recommended to do a MARPE to widen, a tongue tie release and myofunctional therapy, and an MMA to advance the jaws. I am 100% cool with everything but the MMA. It seems so extreme and brutal on the body. I try to avoid surgery and help my body heal on its own in general. However, I am worried that the other procedures on their own won’t fix where my collapse is and that MMA is the best option for throat/tongue base. Anyone been through this and have any thoughts?

For reference, my sleep study showed AHI of around 3 but RERA around 9. I’ve been using cpap which eliminates AHI but my sleep hq data is sill showing lots of flow restrictions all night (minor, but they are waking me up as I have a low arousal threshold). I’m getting a new mask next week to address leaks and then will tweak my pressure settings but I want to explore my options beyond PAP.

Diagnosed with mild OSA that I am sure is UARS but my doctor doesn’t recognize it. I have minimal AHI but many flow limitations. I have an airsense 11 pressure range 6-12 that I’ve been using for about 2 months. I feel like I am going a bit insane trying to make it work. I am a side sleeper who wakes up and shifts positions a lot. I have a nasal cushion mask (n30i) that is constantly leaking. It is properly fitted, but moves every time I shift positions and fully wakes me up. If I tighten it I get fewer leaks but then my nose hurts (I’m hypermobile and the collagen in my nose is super sensitive). I tape my mouth to make sure leaks aren’t coming from my mouth and to maintain tongue posture. I wake up several times a night with my brain feeling like I’m solving a very difficult problem until I eventually take off the mask. Like many people with UARS, I have a very sensitive nervous system and the CPAP just feels like too much for my system to handle - too many unnatural inputs for me to normalize.

I know this is a bit of a rant, so I guess I’ll get to the point:
- is it worth trying to fix my issues (ie leaks, flow restrictions)? I feel like this is taking over my life.
- am I just CPAP intolerant? Should I take a break just to remove this complication in my life (which is probably not helping my sleep at all to have this stressor)?
- I have an appointment with my sleep doctor next week. Should I push for bipap?
- should I try a different mask?
- should I just focus on palate expansion, tongue tie release, myofunctional therapy and possibly jaw surgery? (I have a consult later this week for surgery and have been recommended MARPE and tongue tie release by two orthos)

🙏

I experience a lot of symptoms that my doctor attributes to a disregulated nervous system- lots of muscle clenching, insomnia with muscle twitching and a feeling of being activated, trouble regulating temperature, low HRV, etc. I feel like I do all the things right and nothing is helping. What am I missing?

- I get adequate exercise. 10-15k steps a day mostly in nature.
- I garden, spend lots of time in my yard, snuggle with my dog.
- I read calming things and listen to calming music before bed. I avoid screens, bright lights, and activating books.
- I have a very consistent sleep schedule and sleep hygiene routine. Warm baths with epsom salts multiple times a week.
- mag glycinate before bed every night
- job can be stressful but I have strong boundaries and don’t think about it when I’m not at work.
- I hum/sing along to music daily to activate the vagus nerve.
- I do gentle stretches throughout the day.

I have hypermobility and a narrow palate which leads to breathing restrictions at night. I’m new to a CPAP and trying to see if that can help. I also have orthostatic hypotension and have had it my whole life. Could a lifetime of these things be messing with my nervous system so much that all the calming things in the world don’t help? I’ve even wondered if I have unresolved trauma I don’t know about.

Any thoughts are welcomed. I’m tired of the typical advice for helping the nervous system.

I can fall asleep no problem with my CPAP but then I inevitably wake up around 2:30 and drift in and out of sleep for the next several hours. I keep my CPAP on as long as I can stand it, but usually around 4-5 am I just end up taking it off and can easily fall back asleep afterwards. Any ideas on why its harder to fall back asleep with it on? Any suggestions for how to improve my odds of being able to fall back asleep with it on?

Stats: My pressure is set at 6-12 cm and rarely goes above 6.5. I have pressure relief set at 3. My AHI is zero. Sleep HQ shows that I have several small leaks throughout the night and also several minor flow limitations throughout the night despite AHI of 0. My Glasgow index averages about 1.15 primarily characterized by high top breaths with some flat top characteristics. On paper my PAP therapy is going very well, except that I'm awake multiple times a night and unable to truly fall back asleep with the mask on.

I’ve had decades of heavy bleeding, intense pain, fibroids, anemia, etc. I’ve lost years of my life to this. I was 100% convinced that a hysterectomy was as inevitable for me, but over the past few months I’ve gotten everything under control with norethindrone. No more pain. No periods. Just… peace. I know it doesn’t fix the underlying issue, but it’s making me wonder if I can cruise through to menopause (I’m 43 now). Sure I don’t like the bulk of my uterus and fibroids, but my life is much better now. What am
I not considering? What would you do in my situation?

A few days ago I got back from an international trip and have been super jet lagged and taking lots of naps. I’ve been in a lot of light sleep and so a lot more aware of breathing patterns. One pattern I’m noticing a lot in myself is that I inhale fine but can’t exhale through my nose - I end up making a “puff” sound while exhaling out of my mouth or make weird elephant noises. It wakes me up. I always thought that sleep apnea was an issue with the inhale, so I’m confused by my inability to breathe OUT. I have diagnosed mild sleep apnea and have been doing my best with a CPAP but cannot get through the night with it. I strongly suspect I have UARS instead of OSA but of course I’m on my own with that.

Hi, just curious if anyone has been here and what your experiences have been like. My doctor just referred me and I’d like to have an idea what to expect. Are they thorough on testing? Do they do genetic testing? Are they good about linking or diagnosing related conditions? Do they refer out to other specialists if it’s warranted?

Truthfully I’m a pretty functional person but I think I compensate and suffer a lot more on secret than I even let myself believe. Part of me feels like I don’t need to visit a specialty clinic but I’m trying to be as open as possible, especially if I can improve my quality of life in a meaningful way.

I’m currently on vacation in Japan and working really hard to manage orthostatic hypotension and other random dysautonomia but the heat is making it difficult. Waist compression, taking fludrocortisine, lots of electrolytes and water and sitting a lot. Today I had a good day (not so hot) until I ate. Suddenly I felt like I’d been hit with a bag of rocks - blurry vision, started slumping in my chair, intense coat hanger pain, hot flashes, the works. Yesterday I barely ate because of the heat but today I was hungry again but I’m traumatized by my experience. This is so sad because the food is all amazing! Has anyone else had a similar experience and found something that helped? I can’t not eat, but I’m tempted to stop altogether!

Norethindrone has been a bitch man. First it made me depressed and just now it made me pass a huge chunk of uterine lining through my cervix. Why is it so hard to just be normal? I guess I’m getting a hysterectomy now.

Last night was my first full night of CPAP (thanks to a new mask I got yesterday). My myAir data said I had no events and the pressure never went above 4. My Oura ring said I had multiple breathing events which were all accompanied by a heart rate spike and an awakening event. How can I better understand what’s actually happening and adjust settings on my machine to increase the pressure when I need it? I’m inclined to believe the Oura ring because of the accompanying HR spike and awakening, but obviously the sensitivity of the CPAP is at a much higher threshold for detecting breathing difficulties. For reference I have an AirSense 11. My sleep study showed more RDI than AHI so maybe this is related?

I am obviously very new to this so please speak to me as such - a lot of the acronyms thrown around here don’t make sense to me without explanation. Thanks in advance!

Went not great. I struggled to overcome the resistance breathing out and got close to panic a few times, experienced air hunger/co2 buildup feeling. Finally got to sleep but as soon as I turned over the nose pillow seal came loose. I switch sides a lot while sleeping because I’m hypermobile and it’s hard to get comfortable, and every time I moved the seal would break. I tightened the mask slightly but then woke up an hour later with my nose very tender from pressure (it’s still tender this morning). That’s when I gave up - I made it two hours. My clinician said that nose pillow masks give the most resistance to breathing out because you have to breathe through the smaller holes and to possibly consider a different mask to improve that feeling. I have a week to decide if I want to switch out my mask. Anyone else go through something similar??

I'm 43 and work for the government. I have a very good pension, a Roth IRA, a Traditional IRA, and a 401(k). When I was younger I primarily contributed to the IRAs, but a few years ago switched over to my 401(k) which is sponsored through work, but there is no employer match (the employer match goes towards my pension). Recently I have been wondering if I should be distributing my contributions more (I generally contribute $1500 monthly above and beyond my pension contribution, which is about $1200), like splitting between my IRA and my 401k. I make too much to contribute to a Roth IRA, but could convert IRA contributions to my Roth account. I'd love any thoughts!

I started taking norethindrone 5mg daily just after my last period. I have had no side effects so far aside from some bloating at first (but that could have also been from a weekend of “fun” eating) but that has resolved. A few days ago I started bleeding lightly which lasted for two days and is already gone. I’m not sure if this is my “period” or spotting, but it started on day 27 of my cycle which is normally when my period starts. I realize that many people say to wait 2 full months for full effects, but just wanted to share my experience so far on here, especially since so many people have negative experiences with this drug and mine so far has been nothing but positive.

Has anyone else felt like they went gray prematurely due to anemia? I was anemic without knowing it for over 15 years and I feel like it really took a toll on my hair. Now I’ve had infusions and am supplementing and tracking my levels closely. My gray has stabilized and isn’t getting worse. But I don’t know if there’s anything I can do about the grey hair I got when I was anemic. Can anyone relate? Is it even possible to reverse gray hair?