TechieHippie's story: "mild" apnea but clusters of SpO2 drops

[TechieHippie]

Hi all, I'm so glad I found this caring, dedicated community. I've gleaned what I can from reading and would like suggestions for optimizing my treatment.  I understand it is not medical advice.

I'm Lisa, a self-titrating, brand new (12/23) APAP user, but I have about a year and a half of nightly oxygen data from Wellue SleepU devices. I know the Resvent iBreeze isn't well regarded, but I got it out-of-pocket for a steal and have found it to be quite good so far (with a different mask), and have (mostly) successfully connected it and my SleepU data to Oscar and included screenshots from last night. (I'll post Oscar issues in the software forum later).

I don't know how much history you want up front. Using the SleepU last year I refined my sleep with sleeping positions, mouth tape, and tongue retraining after deep tongue-tie release surgery in 2021-22. I know it was much worse before but never measured. With those changes I got to the point where most nights I have a low AHI, but without getting much deep sleep and still symptomatic. My dad had severe complex sleep apnea, diabetes, congestive heart failure, COPD, bipolar disease, and more. After visiting a low-altitude state, I realized how much brain fog I was still having, and was ready to take the plunge to address my health.

I still get the occasional night with clusters of sharp oxygen drops (80s and high 70s) that I've been trying to figure out for the last year., and have loosely connected them to chemical exposure and hypothyroid, more about that later. They even (still) happen when I'm awake and trying to relax in bed, even when conscious of body position, chin tuck, etc.  It's like I forget to breathe and have no impulse to breathe. I can breathe if I remind myself, but the breath is high in my chest. I can't relax or the impulse to breathe goes away again. I can be awake and feel it happening. Suddenly my consciousness is somewhere else, with flashes of images or like a waking dream. (At my worse I got brief episodes while driving, even as I was using all my willpower to breathe, wiggle, and stay conscious, then the adrenaline would get me out of it. Scary.) 

Night before last was challenging. I was awake for over two hours while I had the pattern of worsening oxygen drops every time I wasn't forcing myself to breathe, and the APAP pressures kept jumping really high.  Normally I would get up and walk around, and take extra thyroid medication (which I finally did at 4:40), but I wanted to ride it out for a couple of hours to get the data. I only have the SleepU data; unfortunately OSCAR won't import it probably because I switched to CPAP mode out of desperation in the middle of the night.

Last night, though, was great! (screenshots below). I used the Dreamwear nasal cushion with mouth tape, with min pressure 7 and EPR 3. At first my tongue would get lazy (I've been working on retraining it for a couple years) and I didn't think my tongue would stay up comfortably all night, but to my surprise after a short while it was smooth, and I woke feeling refreshed. I did change the max pressure to 10 after it woke me with high pressures an hour in, not wanting to repeat the previous night, but it looks like it never hit the cap after that anyway.

Thanks again for sharing what you see. I will add more history and data to this thread in a separate reply.

- Lisa in Colorado

[TechieHippie]

The more detailed but less relevant history, in case it's helpful: 
For the last decade or two I've been trying to unravel multifaceted chronic illness for myself and my family. I've struggled with thyroid and adrenal issues, fatigue, anxiety and depression, pretty severe mold and chemical sensitivities, migraines that resolved with strict dietary changes, joint pain that is improved with diet, but not resolved, etc. 

I was a caregiver for my dad until he passed in 2022. He had severe complex sleep apnea, diabetes, congestive heart failure, COPD, bipolar disease, and more. I have half-sister with MS and there is mental illness scattered throughout the family as well. My adult son has a lot of health issues too. We originally got the SleepU for my dad and I started using one too. Recently I read The Covenant of Water, and I feel like I'm beginning to find the roots of my own (albeit much more common) family curse! 

It was actually my alternative dental hygienist who pointed me in the direction of better sleep when she realized I had a tongue tie. The myofunctional therapist she recommended was the one who pointed out that many of my symptoms tracked with disordered sleep. I had a deep frenectomy with myofunctional therapy before and after, as well as other bodywork to correct a lifetime of maladaptive posture from the tie. It's incredible how much the muscles of the jaw, tongue, and neck relate to the rest of the body. I did exercises to retrain my tongue position, swallow, etc. I did not have an airway study done, and that may be on the horizon.

For a while, I struggled with vertigo from the combination of the oxygen drops and being too rough with my exercises. A poor glasses prescription minus been a part of that. The vertigo was dislodged crystals in the inner ear, and doing the half somersault maneuver regularly mostly resolved it, but I do have to be careful and can only sleep on my right side or stomach.

I have chemical sensitivities and last May I found that those periods of big oxygen drops correlate with chemical exposure during the day and/or times of overdoing/stress. At first I thought the chemical connection was psychosomatic - but then I correlated SleepU data with appointments where I hadn't known of exposure, and new clusters of oxygen drops in April-August showed that my massage therapist had changed something months before. She confirmed she had changed her laundry detergent in March. It is somehow related to my hypothyroidism, and taking extra Armour thyroid relieves it in 20-40 minutes. But we suspect the thyroid is just the proverbial straw that broke the camel (something deeper is going on) and my doctor was concerned about adding too much thyroid, which brought me down the path to the CPAP. 

Here is data from last year on the SleepU, and a short incident of this the second night I had the new APAP; I didn't know yet to increase pressure to account for EPR then, so it might be suspect, but I'm posting because I can't get the one two nights ago into OSCAR.

- Lisa in Colorado

[gainerfull]

Hi Lisa,

Hopefully we can help you find your way back to good health. One thing I noticed in your OSCAR data is you are experiencing positional apnea and should consider the remedies commonly suggested here like wearing a soft cervical collar. I'm using the velpeau collar and like it quite a bit:

https://www.amazon.com/VELPEAU-Brace-Foa...d_rp_0_7_t

Once you resolve the positional apnea, we can then evaluate you for how the pressure is working out. What's your nasal hygiene routine on a daily basis? Any allergies?

Also, why are you taking thyroid medicine ad-hoc? Isn't it recommended to take it at the same time, twice a day, every day?

[TechieHippie]

Regarding the collar: I will measure and get a collar, I was looking at those yesterday. I was thinking it wasn't positional, even though it's clustered, because it happens when I'm awake and making sure that I'm in a good position. But, if it's a matter of inflammation after exposure to chemicals, that would explain how it could be a very subtle positioning change. It doesn't explain why I have no urge to breathe, though. Maybe something comorbid.

Nasal health: I guess I don't really have a nasal hygiene routine, and I never thought about the direct effect of nasal congestion. I don't have seasonal allergies, but I do have reactions to mold and chemicals.  I usually change clothes and shower if I come home fragranced.  I do have a sinus rinse bottle as well as a salt inhaler that I never got the hang of that I could try again. 

I was reading another thread in which a user suggested exercise before bed, which I've actually had great luck with before and didn't know why. They said it increases carbon dioxide .and increases improved to breathe so I might try a little of that.

Thyroid medicine: good question, long answer.... Yes, I do take my Armour 60mg twice a day at roughly the same time, although the exact time seems to matter less than that it's on an empty stomach and away from supplements. So I take it first thing in the morning and wait a couple hours to eat, then again mid-afternoon. But sometimes I forget it and sometimes I seem to need a little more of it. Armour has t3 and t4, as well as t1 which I get because I take it sublingually. I've taken it this way for many years. 

But when I discovered that a little extra  (25% increase) seemed to help, I talked to my doctor and she okayed me using leftovers this way, and then at my annual appointment we checked in and she prescribed an extra 30mg, which I could play with the timing of, but told me to watch for heart rate increases.  That's the t3 because it's bioavailable whereas the t4 has to be converted.

I can't take the third 1/2 dose at bedtime because I take magnesium and it binds it up.  I tried adding it to morning, but all it did was add more energy and anxiety to the early part of the day and I crashed in the afternoon. So I take it in the middle of the night, and if I sleep through, I probably didn't need it.

 I've read that our t3 levels naturally fluctuate some based on circumstances anyway, but I do have to be careful not to run down my nervous system. As long as my running average stays the same, the t4 levels should stay pretty even. But I have to admit, some of this I'm just managing intuitively because that's generally effective for me. 

Thank you!

---

[TechieHippie]

Hi all, 

A quick update and a few questions. 

Things are still in flux but I haven't had any horrible nights lately which I'm grateful for. I got my Velpeau collar and I think it's the right size (I was a large; most things I'm a small or medium.)  It feels a little tall but the sleeve helps that. Unfortunately it has an odor that I don't want in my bed and I need to wash it.  I am planning on washing it delicate cycle in a net bag unless you think I need to hand wash it.  The packaging doesn't say. I'll check the Amazon Q&A.

I will try the collar when I can, but I still have a sense that my positional apnea is about my tongue position rather than head position. 

Is it possible that my machine doesn't detect CA events? There are times when I am awake, and I just forget to breathe...but as soon as I feel my oxygen dropping and my consciousness going into nonreality, I manually breathe and it's not particularly obstructed, at least not in a way that changing position or tongue-position helps. I've attached zoomed in sections. I notice that the mask pressure has small sinus rhythm beforehand. Is that normal?

I'm finally adjusted to the EPR 3 (and min 7). Going from EPR 2 to EPR 3 on my (cheap) APAP required me to relax my breathing another notch so that I didn't start fighting the machine right at the top of the inhale, where there is an abrupt transition. It still sometimes, maybe a handful of times in my awareness through the night, feels like I've just started exhaling when the inhale starts. They aren't annoying enough that I note the time. I've learned to just go with it - ok, it's want another deeper inhale before I exhale - I can do that.

My general OSCAR stats are promising. My oxygen is a full point higher on average (and I think it's more than that) since being on APAP. My lows are higher too, as is my % of time in SpO2 Drop.

Here's last night's data. I used the Dreamwear nasal only mask and only taped my mouth the second session, in the morning. When I woke I was sure there had been lots of leaks because my mouth was dry, but then realized I forgot to fill the humidifier before I went to bed. It was a good exercise though because now I'm wondering if I'm fighting the mouth tape.

   

[BoxcarPete]

That rhythm in the mask pressure is probably a FOT - forced oscillation technique. It's a method used by CPAP machines to determine if the lack of breathing detected by the machine is because your airway has collapsed, or because you aren't trying to breathe. I have no idea if your machine is good at telling the difference, but that's probably evidence that it's trying.

[Wayne41]

My thyroid issues caused me to have a huge tongue which closes off the back of my throat.  I can feel a snap when I breath out.  I was chin tucking  a bit also.  I think  I may have palatal prolapse or a floppy uvula and enlarged tonsils but I'm too old to do anything about it.  
This is treated by an ENT.  You can get a stent which you shove down your nose to keep your palate from blocking.  Palatal prolaps causes a lot of hypopneas and perhaps a lot of flow limitations.  If you look at your breaths and see the top is flat or notched you may have a flow limitation caused by nasal obstruction.  Good to get an ENT to check.  CPAP cannot fix this.

[TechieHippie]

Thanks!  Last night went really well. I did some gentle tongue stretches and limbering which I think helped a lot, and used the nasal pillow plus mouth tape, with my stuffed animal under my chin when I remembered. No drops!!  The pressure really never kicked up and I only had a few flow restrictions. My only minor oxygen drop was when I got up to use the restroom.

So now I know what my graph could look like, it gives me a better baseline for debugging the bad nights.  Is there anything here I'm missing?

Lisa

[BoxcarPete]

I'm curious to see what your machine flags as a flow limit. Can you share a couple 3-5 minute views around the FL flags at 01:00 and 05:05?

Other than that, your night looks good! How do you feel?

[TechieHippie]

Sure, thank you!  Here are those images.  I felt good yesterday. My mood was a little low, but it was a better night than 95% of my nights. Last night wasn't as bad as I feared but it wasn't great. I'll post those in a new response.