Renamed: DurtGurl's adventures in therapy

[DurtGurl]

I am suffering and can't find CPAP settings that work for me. I am systematically trying lower to higher pressures, with and without pressure relief, and even flat-line (non-adaptive) CPAP, and nothing seems to help. Taping my mouth keeps away the dry mouth so I do that every night now. However, the cervical collar that was recommended did not seem to help anything. Through all this testing, I still get pressure rises during the onset of OA or CA episodes and then the pressure tops out at whatever max pressure I have set. I see this every night, no matter if the max pressure is 13, 15, 17, or 20 and some of the apneas are up to a minute long! Although it looks like I should go to higher pressure, above about 16 I get excessive mask leaking/farting which wakes me right on up. I am desperate! I will be seeing my doc soon and hope that he orders a proper in-lab sleep study with titration etc; I was diagnosed in August 2020 after a home sleep study at 25-30 AHI.

I have been reading and absorbing all advice that you experts provide. The one thing I feel that I am not doing is being patient and giving the changes I made a chance. I am super anxious about it all and make adjustments every night, only to be disappointed in the morning. This morning was awful. After so many nights of horrible sleep, I woke with a monster headache, utter exhaustion, and return of intense fibromyalgia pain (I take Cymbalta to control the pain and keep my mood in check).

Any ideas other than just waiting for doc visit?

[zonker]

I have been reading and absorbing all advice that you experts provide. The one thing I feel that I am not doing is being patient and giving the changes I made a chance. I am super anxious about it all and make adjustments every night, only to be disappointed in the morning. This morning was awful. After so many nights of horrible sleep, I woke with a monster headache, utter exhaustion, and return of intense fibromyalgia pain (I take Cymbalta to control the pain and keep my mood in check).

Any ideas other than just waiting for doc visit?

well, you've pretty much got the answer. i know it's hard to wait for this stuff to take effect, but you have simply GOT to. you also need to post graphs of each change here. and make ONE change at a time. it's really the only way to do it. otherwise you are doing what we call "dial winging" and that doesn't do you any good.

i seriously doubt that the doctor has some magic wand to wave to cure this stuff.

you can do this. we can help. you have to give it time to see which change works.

good luck!

[MAINEGUY]

There are so many cheap variations of the cervical collar on Amazon... Might you have a recommendation for something comfortable and non-itchy?

I would start out with a 3- or 3.5-inch, soft DMI (or similar) brand. Eventually, I moved up to a 4-inch, firm Carex. The latter is more effective for me, but I would advise getting accustomed to wearing a smaller, softer collar. And, it might work well for you. If it is not effective enough for you, you can move up later.

With a little price-shopping, I've been able to find them for about $7.00 shipping included. Most pharmacies - Walmart, Walgreens, CVS and independents - carry a small selection at cheap prices. (Beware of breathing COVID air.)

If you have trouble finding a good price online, I can look for you when I get some more time.

Thanks Grannie! I feel if I can just keep my mouth shut then I'll be on my way to proper therapy and good rest. The AirTouch F20 is super comfy and when it is sealed I feel like I'm in a warm hug all night. I'm hoping the collar gives me the same sense of comfort and care. Thanks for your (and everyone else's) help on this journey. As with everything I do, I'm a bulldog and will not give up until I get it perfected!

I am only on my second night trying a cervical collar but I can tell you, for me, it is working as I had hoped to keep my jaw from dropping and mouth breathing when i am using my P30i. Yes, everyone's results will vary but for 15 bucks pick one up and try it. I find it much less annoying to mouth taping.

Good luck to you.

[Julie]

Hi, read through your thread here, but if I missed the part where you say you've had tests for e.g. thyroid problems, and/or other potential things that can look like apnea (which you do seem to have) but contribute more of their own issues, maybe you want to double check with your MD to rule them out. Just because you have apnea doesn't mean you therefore don't have anything else (hope not, but...).

[DurtGurl]

well, you've pretty much got the answer. i know it's hard to wait for this stuff to take effect, but you have simply GOT to. you also need to post graphs of each change here. and make ONE change at a time. it's really the only way to do it. otherwise you are doing what we call "dial winging" and that doesn't do you any good.

Ok, I am going to sit for a while with my settings at pressure min/max of 8/15 and EPR=2. Last night I had only two cheek blow-outs so this seems like a good place to set-and-watch. Below is last night's OSCAR at these settings.

Hi, read through your thread here, but if I missed the part where you say you've had tests for e.g. thyroid problems, and/or other potential things that can look like apnea (which you do seem to have) but contribute more of their own issues, maybe you want to double check with your MD to rule them out. Just because you have apnea doesn't mean you therefore don't have anything else (hope not, but...).

Thanks for the question. I have had a myriad of tests over the past couple of years and the sleep apnea home test was the last gasp effort on my doc's part to figure out why I feel so exhausted and tired ALL THE TIME. Last year I went from a diagnosis of rheumatoid arthritis to fibromyalgia. I switched from 15+ years of Prozac, Plaquenil, and methotrexate to Cymbalta and finally have my pain under control! I also quick drinking in May 2020, after a bloodwork scare following an unusual week-long bout with diarrhea (my lipase, a pancreas enzyme, was off the charts). Pancreatic cancer runs on both sides of my family but ultrasounds, colonoscopy, upper GI scope finally led to the conclusion that my heavy-handed nightly cocktails were slowly killing me. I had long thought that my daily habitual drinking was a problem so this was the perfect time to quit. I read the book "The Naked Mind" by Annie Grace and her words struck home.

I quit the booze May 20, 2020 and have been 100% alcohol-free ever since with no plans to ever return to my old ways. I fully expected to turn the corner on my exhaustion with this monumental change in my life, but nothing changed. That's when the doc ordered the sleep study. My latest change was that just last month, at age 58, I went to semi-retirement. Going from 50+ hrs/week to 20 hrs/week has so far made a huge difference in my stress levels and I'm finally getting exercise back into my life. But I'm still having a yo-yo affair with exhaustion. So, that's my story! Fighting the demons one by one in a systematic scientific manner is how I am trained and yes, I have spreadsheets!

[Pugsy]

Are you still taking the Cymbalta?

[DurtGurl]

Are you still taking the Cymbalta?

Yes. 60mg AM, 30mg PM

[Pugsy]

I know you take Cymbalta for a legit reason but you really need to dig deep into the side effects to that medication.
It may impact how you sleep and feel once your cpap therapy and your mask issues are resolved.
It also could be a factor in your yo-yo situation with exhaustion.

Are you taking any other medications?

[DurtGurl]

I know you take Cymbalta for a legit reason but you really need to dig deep into the side effects to that medication.
It may impact how you sleep and feel once your cpap therapy and your mask issues are resolved.
It also could be a factor in your yo-yo situation with exhaustion.

Are you taking any other medications?

I also take Estradiol and Nexium (generics of course) along with Ca and fish oil supplements. I would hate to have to quit Cymbalta as it has such a positive impact on my life, but research is probably needed!!

[Pugsy]

With any medication we always have to evaluate the risk vs reward thing.
Sometimes we just have to accept the side effects because to go without the medication would create a worse feeling situation.

But sometimes just knowing that part of our unwanted symptoms are related to medication side effects will help our mindset in terms of dealing with things. We know that the meds can create a slight set of problems but to not take the meds can create a bigger set of problems so we learn to accept the lessor of 2 evils.

Right now you are still struggling with cpap therapy and masks and stuff....so you deal with that problem first and get your cpap therapy optimized....then seen what is left in terms of how you feel that might need to be improved upon.

When you fit your mask at the beginning of the night what pressure are you using for the fitting? The starting minimum or a much higher pressure (since that is where your machine wants to go anyway). If we fit a mask at 8 cm to not leak but the pressure goes to 14 ...the same fitting will leak at 14. Need to fit the mask at the higher pressure.

[Miss Emerita]

It's excellent you will be taking Zonker's advice and sticking with settings for a bit before changing something. Sleep is so variable night to night; unless a setting produces a disaster, it always helps to have data for a few nights to guide next steps.

Information from a trusted web site about Cymbalta:

https://www.mayoclinic.org/drugs-supple ... 067247?p=1

It must be wonderful to have relief from chronic pain, and you must not lose this benefit. But you might want to talk with your doctor about dosage and timing of dosage, given that possible side-effects include tiredness and sleepiness. (I know you know this, but don't change anything without the doctor's say-so.)

[zonker]

well, you've pretty much got the answer. i know it's hard to wait for this stuff to take effect, but you have simply GOT to. you also need to post graphs of each change here. and make ONE change at a time. it's really the only way to do it. otherwise you are doing what we call "dial winging" and that doesn't do you any good.

Ok, I am going to sit for a while with my settings at pressure min/max of 8/15 and EPR=2. Last night I had only two cheek blow-outs so this seems like a good place to set-and-watch. Below is last night's OSCAR at these settings.

well i've got to say that i admire the hell out of you for taking control of your life the way that you have!

just keep at it and follow pugsy's and miss e's advice. i'll continue to watch and pipe up every now and then.

continued good luck!!