Hello, thank you and a couple questions

[MO Gal]

First thank you..especially for the 'success stories' thread which helped motivate me to give the cpap a try.

60+ year old female. overweight with Hashimotos, secondary adrenal insufficency and secondary polycythemia.

I've been extremely tired for the past few years with headaches, muscle aches.. have seen a multitude of doctors and specialists and no cause has been found. My primary thinks I have fibromyalgia. He has prescribed drugs for pain which I am not taking since pain is not the issue, the fatigue is. I also have high hematocrit which is most likely secondary polycythemia which could be caused by sleep apnea. I don't check any of the boxes on the typical sleep apnea questionaire, don't feel especially sleepy during the day, not falling asleep during the day. Only told by one person that I snore. Because of the high hematocrit I was allowed to have a home sleep study which I had back last December. Results from that was a REI of 19.5 (3% calculation), moderate sleep apnea with oxygen dropping below 90 for 59 minutes. Lowest oxygen was 74.

The sleep doctor said I have moderate sleep apnea and suggested the cpap since my oxygen dropped so much for such a long time. I am claustrophobic so never thought I would use a cpap.. initially I planned on getting a mouth guard. CPAP was ordered and finally I received the AirSense10 with a nasal mask in August (a very long wait since the sleep study was in December). I actually got used to it fairly quickly. Had issues with my mouth opening during the night so tried a makeshift chin strap which didn't work. Bought some of the cover-roll tape recommended by the guy on youtube, OMG.. that stuff is sticky. Was so glad I tried taking it off after a couple hours to get a drink because if I had ripped it off during the night I think I would have lost part of my lip. No more tape for me.. plus I got the 'chipmunk cheeks' that some of you talk about. I've been using a 'gaitor' type face mask just bunched up over my mouth which helps me keep my mouth shut, but also allows me to exhale through my mouth when I need to. A few days ago I got a full face mask (dreamweaver), but only used it one night because it leaks terribly. The headgear is a medium and I need a small.. so hopefully that will solve the issue. The current sleep data from my machine shows a pressure of 11.2, leak at 23c/min, AHI of 0.5 and a central AI of 0.1. Turned off the ramp because I thought I wasn't getting enough air during the ramp. Raised the humidity from 4 to 6. How does all this look? Have only used the machine 4+ hours for 8 out of 17 days. Longest was just over 11 hours one night!

Questions... Will I eventually be able to function on less hours of sleep? I need at least 9 now. Will the cpap help with my low oxygen levels during the night or will I need supplemental oxygen for that? Thanks!

[Pugsy]

Will the cpap help with my low oxygen levels during the night or will I need supplemental oxygen for that? Thanks!

Only have time at the moment for a quick response to this question.

If you use the machine all night and the settings are optimal for prevention of the airway collapses AND if the sleep apnea was the only cause of the low oxygen levels (there are potentially other causes) then there is a very good chance your low O2 problem will be fixed. You might ask your doctor or machine supplier / DME to order an overnight pulse oximeter reporting to see if you are still having oxygen level drops or not.

My O2 went to 73% pre cpap but once I was on cpap and was sleeping all night with the machine and not having very many apnea events my Oxygen levels quit dropping.

[MO Gal]

Thanks Pugsy for the reply. Just noticed you are in Missouri... me too, hence the MO Gal user name.

[Pugsy]

Duh...picture me slapping my forehead...That happens when I am short on time...obvious stuff gets overlooked.

Where are you located? I am down in the SW corner.

[MO Gal]

I am halfway between St. Louis and Columbia off I-70.

[Julie]

BTW, to help diagnose fibro, neurologists count on being able to check 14 (some say more) specific points on patients for reactions, a sort of basic manual checklist apart from anything else, and your GP may not be aware of it. I'd want a referral to a neurologist to see what's what and who knows, they're pretty good about sleep issues too, so you may get a lot of answers that way.

[MO Gal]

Julie, I did see a rheumatologist who did the 'points check' on me... he didn't think I had fibro. Some of the points are tender at times, but not when he checked. I think my primary has just given up on me. lol I think it would be more likely that I have chronic fatigue... but I don't think there's any definitive test for either Fibro or CFS. Hoping I will feel better in a few more weeks on CPAP.

[ozij]

Bought some of the cover-roll tape recommended by the guy on youtube, OMG.. that stuff is sticky. Was so glad I tried taking it off after a couple hours to get a drink because if I had ripped it off during the night I think I would have lost part of my lip. No more tape for me..

1) Did you put Chapstick on you lips before putting on the tape?
2) Did you then suck in your lips gently before putting on the tape?
The aim of this 2 step procedure is to keep the thin sensitive skin of your lips from touching the sticky part of the tape.

3) People here used different types of types of tapes -- I've read - not yet experienced personally - that there are silicone tapes that are easier to remove.

4) Tape tip I suddenly remembered: back when we started using surgical masks against covid, I asked my surgeon brother what they did against fogging glasses. He said they tape the mask. I almost flipped at the though of putting tape on the sensitive skin near your eyes. Then he said: I tape it and and remove it from my shirt a few times, which makes the adhesive gentler. You could dedicate a clean cotton T for shirt that.

Mouth leaks must be controlled.

[Miss Emerita]

I want to second Pugsy's suggestion that you use an oximeter at night. If you can afford one, try getting a recording oximeter so you can see the ups and downs of your O2 levels over the course of the night. On Amazon, enter "recording oximeter" in the search box and you'll see several that are under $40.

I'm assuming you're taking thyroid medication given the Hashimoto's. Do you get regular tests to see whether your dosage needs to be adjusted?

In your place, I'd try the pain meds, especially if pain interferes with your sleep.

I'm a little uncertain from what you've written whether it's fatigue or tiredness you're experiencing. In general, fatigue gets worse with activity and tiredness gets better with decent sleep. How would you classify what you experience?

[MO Gal]

Ozji I did not use chapstick.. the tape was really even too sticky to be comfortable on my facial skin. I will try sticking the tape on fabric a few times to decrease the stickiness. Thanks for the idea!

Miss Emerita, I will look into a oximeter if I don't start feeling better in a few more weeks. Yes, I get regularly tested for my thyroid issues. TSH is always in range (although not optimal if one follows 'Stop the Thyroid Madness' ideas in which the TSH should be suppressed... endocrinologists are terrible though IMO). I definitely have fatigue. I wake up feeling tired.. the part of the day I look most forward to is going back to bed at night. I don't have pain that I'd complain about or even list as a symptom at this time. Plan on asking the sleep doctor for Modafinal when I see him. I just want to have enough energy to complete something during the day besides what absolutely has to be done (laundry and dishes).

[readingteacher]

RE: mouth tape:

I use Somnifix mouth tape. It is designed and made specifically for mouth taping. It has a gentle adhesive, yet for me it sticks all night. I am even able to use one for an afternoon nap, remove it and set it aside, and use that same piece again for that night. It is very important for me to have a gentle adhesive because I am allergic to some adhesives (get a rash) and can only use certain brands of bandages. No problem with the Somnifix!

The strips are individually shaped and have a small vent in the center to allow air to escape if necessary to prevent "chipmunk cheeks". An awesome feature!

Yes, they are more expensive than buying a roll of whatever tape, but they are completely worth it to me for comfort and convenience. And they work! My leak rate is usually zero, and hardly ever goes above 2.

[ozij]

RE: mouth tape:

I use Somnifix mouth tape. It is designed and made specifically for mouth taping. It has a gentle adhesive, yet for me it sticks all night. I am even able to use one for an afternoon nap, remove it and set it aside, and use that same piece again for that night. It is very important for me to have a gentle adhesive because I am allergic to some adhesives (get a rash) and can only use certain brands of bandages. No problem with the Somnifix!

The strips are individually shaped and have a small vent in the center to allow air to escape if necessary to prevent "chipmunk cheeks". An awesome feature!

Yes, they are more expensive than buying a roll of whatever tape, but they are completely worth it to me for comfort and convenience. And they work! My leak rate is usually zero, and hardly ever goes above 2.

Doesn't the vent let air blow out of you mouth? Isn't the air blowing out of the vent the reason you don't get chipmunk cheeks?
I know that in my case, even a small loose corner in the tape will let air blow out, and I will wake up from my mouth getting all dry.

If I could try the Somnifix (they don't deliver outside the US) and found the adhesive worth it, but the vent problematic, I would cover the vent with 3M micropore is some similar tape...

And lest anyone think covering the little vent in the Somnifix tape is dangerous, do take a look a the Oracle mask, an Oral masks with nose plugs (I kid you not) and ask yourself how come it's ok to put plugs in your nose in order to use an oral mask, but not OK to tape your mouth and use a nasal mask....

Edited to make it clear that I am only referring to the vent in the Sominfix tape!

[Miss Emerita]

One thing my rheumatologist said to me a long time ago is that almost all autoimmune diseases in the connective-tissue-disease family have fatigue as a prominent symptom. Hashimoto's is often accompanied by connective-tissue disease. I just want to be sure you've been screened for other autoimmune diseases, though I bet you have.

[readingteacher]

Doesn't the vent let air blow out of you mouth? Isn't the air blowing out of the vent the reason you don't get chipmunk cheeks?
I know that in my case, even a small loose corner in the tape will let air blow out, and I will wake up from my mouth getting all dry.

If I could try the Somnifix (they don't deliver outside the US) and found the adhesive worth it, but the vent problematic, I would cover the vent with 3M micropore is some similar tape...

And lest anyone think covering the vent is dangerous, do take a look a the Oracle mask, an Oral masks with nose plugs (I kid you not) and ask yourself how come it's ok to put plugs in your nose in order to use an oral mask, but not OK to tape your mouth and use a nasal mask....

I have a lifelong habit of pressing my tongue to the roof of my mouth, so most of the time I have a good tongue seal at night using CPAP. For me, the vent allows the occasional "burp" of air if my tongue relaxes to escape without waking me up or disturbing me. (Otherwise, there is nowhere for the escaped air to go but to swallow it? Which would result in aerophagia.) Then apparently my tongue reseals on the roof of my mouth by itself and I just sleep on.

The original poster complained of getting chipmunk cheeks when she completely taped her mouth shut, and of the adhesive on the tape she used being too aggressive, so I thought this might be a solution for her.

As with everything else with CPAP, "Your Mileage May Vary"! Somnifix may not work for you. It works for me.

[ozij]

The original poster complained of getting chipmunk cheeks when she completely taped her mouth shut, and of the adhesive on the tape she used being too aggressive, so I thought this might be a solution for her.

As with everything else with CPAP, "Your Mileage May Vary"! Somnifix may not work for you. It works for me.

Yes, of course.
I was not doubting your solution, I was trying to understand what made it work for you - which I'm glad you explained.