HarleyGirl63 - Therapy Thread

[HarleyGirl63]

I have been on CPAP since Dec. 21, 2023. After 4 months, I feel worse than I did before I started this journey.
I was diagnosed with severe sleep apnea - specifically, over 62 apneas per hour and oxygen dropping to 72%. Additionally, I would just stop breathing at night.

I have adapted to the machine to the point where I can't go to sleep at night without it now. But, while I go to sleep easily and wake up 8 - 9 hours later, I still feel like crap during the day.

I have bulging discs in my neck, so I can't even think about the idea of using a full-face mask, without my neck going into spasm.
So, I've been working on getting my mouth leaks under control (use of a chin strap), but when I get my mouth leaks under control (either by taping or chin strap), I feel WORSE the next day.

Here's an example of when I thought I had a GREAT night, but the next day, I could barely function. I saw an ENT yesterday that says my nasal passages have enlarged turbinates and I would benefit from surgery to reduce them. 
Based on my reading of multiple threads here, I have started bumping up my lower pressure by .2 last night and feel like crap again today.

I'm going to schedule an appt. with a sleep doctor, but at this point, I don't know what to do to get some sleep.
Thanks for any advice.

   

[OpalRose]

Welcome to Apnea Board!

Your results don't look bad at all.  But two things: I think you should move your minimum pressure up to 8cm.  This may help clear up some of the Obstructives, Hypopnea and Reras. And change the Response from Soft to Standard.

Did you experience any Clear Airway (centrals) on your sleep study?  They don't look like anything to worry over for now as they may be just treatment emergent, and will lessen in time.

I am concerned about your oxygen level dropping to 72% on your sleep study.  Do you have a copy of the study?  Post it here if you're able.

Are you using any supplemental oxygen now?  Or are you monitoring your oxygen levels while sleeping with Cpap?

[HarleyGirl63]

Thank you for the reply! 

I didn't think my results looked horrible either - that's what was so frustrating with the way I felt yesterday (and today).

I will change the response from soft to standard.

They didn't put me on oxygen. I did buy a Wellue oxygen ring to monitor my oxygen and I stay in the 94 - 100% range now, with maybe a 10 second drop to 88% one or two nights a week (primarily when I was mouth-breathing).

Here's my sleep report (home study). They said no central apneas, but on average now, they make up the majority of my apneas.

*****************************************
Patient spent 869.9 minutes in bed, and Monitoring time was 870.0 minutes.  89.2% of monitoring time was on her back.

 

Respiratory Data:

There were 0 central apneas, 602 obstructive apneas and 45 hypopneas. The overall apnea-hypopnea index was 45. The mean oxygen saturation was 90.0% during monitoring time and the lowest recorded was 72%.  The patient spent 225 minutes of monitoring time with saturations of 88% or less.

 

Unless otherwise noted, hypopneas are scored with the 4% rule (AASM VIII, D. 1B) using the Acceptance method in accordance with AASM guidelines.

 

Diagnosis:

 

327.23 Obstructive Sleep Apnea

 

Impression:

 

1. Severe obstructive sleep apnea syndrome.Nocturnal hypoxemia.Home sleep testing may underestimate the severity of sleep apnea due to inability to score sleep.

 Recommendations:

 

1. PAP titration study or Auto-titrating CPAP 6-16 cm with close clinical follow up including download of compliance and further adjustment as indicated.

[HalfAsleep]

I'm so impressed you were able to sleep that long during a sleep test with all those wires attached!

I recently had septoplasty and turbinate reduction, and it's made a big difference to my life, as far as feeling I can breathe as I go about my world. IME surgery would certainly facilitate using a nasal mask, but I would also focus on general life improvement in making a decision. Personally, I couldn't use a nasal mask with any kind of efficiency before I had the nose surgery. But note: while giving me noticeable life improvement, the nose surgery isn't at all an automatic fix: there are so many variables in CPAP therapy.

[HarleyGirl63]

I'm so impressed you were able to sleep that long during a sleep test with all those wires attached!

I recently had septoplasty and turbinate reduction, and it's made a big difference to my  life, as far as feeling I can breathe as I go about my world. IME surgery would certainly facilitate using a nasal mask, but I would also focus on general life improvement in making a decision. Personally, I couldn't use a nasal mask with any kind of efficiency before I had the nose surgery. But note: while giving me noticeable life improvement, the nose surgery isn't at all an automatic fix: there are so many variables in CPAP therapy.

Thank you for the feedback on the surgery, HalfAsleep!

Did you have the 'cauterization' method for your turbinate reduction, or the 'suctioning' method?

[HarleyGirl63]

   
I've taken a couple of nights to try the change of the 'soft' response to 'standard'. I DO love this change. Here are Wednesday night's results. I did indeed feel better yesterday, up until 2:00 PM. I got on my elliptical and after 5 minutes, I almost fell asleep, so I had to be careful not to fall off the thing!

I did loosen my chin strap this night, because my neck started bothering me. And got more leaks around my normal REM time.

[HarleyGirl63]

   
Then, last night's (4/25) results. Ugghhhh, I feel worse today.
By the way, I removed the chin strap and tried taping last night. The chin strap is just too much of a trigger for my neck. Was going to try the Knightsbridge chin strap, but it has latex....to which I'm allergic. Go figure.
BUT, I have been pursuing other issues with my doctor this week - namely, my iron levels. We have confirmed this week via a blood test that they are dropping and this morning, I woke up around 1:30 with my right leg trying to run away. I'm guessing this is 'periodic limb movement'....and I'm also guessing it's due to my decreased iron levels. Maybe I can get some of this stuff under control by addressing that factor.
It's tough to sort this out when you have 2 things going on in parallel.

[OpalRose]

I also have been trying to use tape. It's taken me almost a month, but think I finally have it mastered! Cover Roll tape didn't work for me, but I had some Kinesiology tape that I tape my ankles with and cut it aprox 4-5 inches long. The 2" wide is perfect. It sticks without issue and I can get it off easily enough. This has been the only thing that has almost eliminated leaking.

If you can get your leaks under control, I think you'll see other things fall into place.

Also, let us know what your doctor says about your low iron levels.

[Deborah K.]

Your median pressure has been around 9, so I suggest you raise your starting pressure to 9.  I hope that helps!  

[HarleyGirl63]

@Deborah K. - Thank you! I noticed that in last night's report that it was up to 9.22. I will adjust it.

Looking back at January through March's reports, it was averaging right around low 7 to low 8. 

Is it possible that as we adjust to our machines that we need more?

Or is it simply that it's allergy season and I have more 'flow limits' that I now need more?