Four months daily use of CPAP, zero effect, need some help please

[Camus]

Hi everybody, this is my first post on this forum. I've read the newbies sticky post and I hope I am doing this how it's supposed to be done.

I was diagnosed with positional Sleep Apnea back in February 2014 and was given some tips from the doctor (like sewing a tennis ball on the back of an old t shirt so I would not lay on my back). The tips didn't work out and I kind of put it aside. I developed a serious anxiety disorder afterwards and got stuck home for a long time. Only recently have I made the connection that the cause of this could be untreated Sleep Apnea.
So in April this year I did another sleep test and was diagnosed with OSA.

A few weeks after that I started the CPAP treatment with an AirFit F10 mask. A week after that I also got the AirFit P10, and switched between those until I decided to stick with the P10 almost three months ago.

I have an average of 6.5 hours a night of CPAP use, because I generally wake up in the middle of the night and either fall asleep without a mask or stay awake for about an hour. The symptoms I had of fatigue, anxiety, headache, nausea, feeling overall sick, slow thinking, seem only to be getting worse. I went to the long doctor three weeks ago and he wanted to see me again in seven weeks to see if we should change treatment. In his words the CPAP treatment should already have had a significant improvement over the time I've used it, and if not, we should consider trying something else (surgery removing tonsils, etc).

In an attempt to see if I can still get a desirable effect from this machine I would like to ask for help. Is there anything I can do differently? Is there anything I can provide more than these two screenshots?

Overview.JPG (79.62 KiB) Viewed 10435 times

Today.JPG (333.84 KiB) Viewed 10435 times

[Pugsy]

Welcome to the forum.

What medications are you taking?

Why the wake ups during the night? How many?

[Camus]

Thank you!
I take Cymbalta 60mg for the anxiety. I can wake up numerous times a night, but can’t recall specifically why. Many times when I take off the mask I finally feel like I can breathe fully again.
I would say generally 2/3 times, though this can be more and also less.

[Pugsy]

I don't see anything on this report just screaming "fix me and you will feel better".
The wake up and break in therapy isn't probably helping your symptoms but I doubt that it is the lone culprit in your situation.
Most likely you have other issues in combination to cause the unwanted symptoms.

It happens fairly often...we want to blame all our unwanted symptoms of sleep apnea but unfortunately that's not always the case.

Cymbalta side effects are numerous...and I understand the need to take it but it does come with some baggage.
Google the side effect for it and look at a number of sources...they all include some of the very symptoms you are complaining about.
It belongs to a class of drugs called SNRIs and they all mess with sleep and they all can make a person feel like crap during the day.
They can cause people to wake often during the night for no apparent reason and they can also cause people to have problems going back to sleep and those wake ups and fragmented sleep will also mess with how a person feels.
Google "SNRIs and sleep" and start reading.

here's just a sampling

https://www.everydayhealth.com/drugs/cymbalta

https://www.rxlist.com/cymbalta-side-ef ... center.htm

https://www.webmd.com/fibromyalgia/guid ... atment#2-7

Is Cymbalata the lone culprit? I doubt it but it probably isn't doing you any favors either.

We could try some tweaking with your machine settings to see if it helps or not but I doubt very much that your issues are from something that machine setting tweaks can fix.....but it hurts nothing to try.

[Camus]

I will read through the links you’ve sent me. I lowered the dose of the meds a few months ago to 30mg, but it increased my anxiety substantially and made going to school more difficult. It is however something I am open to try again, seeing as it is probably doing me some harm as well.

What kind of tweaks could we do you think?

[Pugsy]

As to what kind of tweaks?
I don't know what all has been tried in the past.
Can you grab a screenshot of the "changes in prescription" section that is at the bottom of that Statistics section?

What was your AHI pre cpap? The sleep study that gave you the diagnosis of OSA? Was it a home study or done in a lab?
Do you have a copy of that report? If not, request it.

[ChicagoGranny]

I will read through the links you’ve sent me. I lowered the dose of the meds a few months ago to 30mg, but it increased my anxiety substantially and made going to school more difficult. It is however something I am open to try again, seeing as it is probably doing me some harm as well.

Pugsy is correct that Cymbalta and all other SSRIs have many bad side effects including bad effects on sleep.

There is a good chance that your anxiety was solely caused by sleep apnea. Even with good CPAP therapy, it may take some time for your brain to heal from this trauma. In the meantime, I recommend tapering off Cymbalta and using small doses of a benzodiazepine, specifically, clonazepam. Clonazepam should only be used in the short term - 4 to 6 months. Of course, you need a doctor who will cooperate.

How are you doing with self-care? Most of us have room for improvement.

Self-care
Avoid alcohol, Reduce caffeine intake, Physical exercise, Stress management, Quitting smoking, Relaxation techniques, and Healthy diet

[Camus]

As to what kind of tweaks?
I don't know what all has been tried in the past.
Can you grab a screenshot of the "changes in prescription" section that is at the bottom of that Statistics section?

What was your AHI pre cpap? The sleep study that gave you the diagnosis of OSA? Was it a home study or done in a lab?
Do you have a copy of that report? If not, request it.

My AHI was 23, done with a home study. The one I did 4.5 years ago was done in a lab, but I don't remember the AHI. I unfortunately have no copy of it, but I will request it on Monday. What I remember is that the chart showed full black lines (breathing stops) when I laid on my back, much less when I would sleep on my sides, but still significant enough.

Changes.JPG (76.97 KiB) Viewed 10388 times

[Camus]

Pugsy is correct that Cymbalta and all other SSRIs have many bad side effects including bad effects on sleep.

There is a good chance that your anxiety was solely caused by sleep apnea. Even with good CPAP therapy, it may take some time for your brain to heal from this trauma. In the meantime, I recommend tapering off Cymbalta and using small doses of a benzodiazepine, specifically, clonazepam. Clonazepam should only be used in the short term - 4 to 6 months. Of course, you need a doctor who will cooperate.

How are you doing with self-care? Most of us have room for improvement.

Self-care
Avoid alcohol, Reduce caffeine intake, Physical exercise, Stress management, Quitting smoking, Relaxation techniques, and Healthy diet

I will taper off, because it also causes other issues (like sexual dysfunction). Thanks for the tip.
About self-care.. yes, there is always room for improvement. I don't drink a lot of coffee (one cup a day). I started smoking again since the beginning of this year when I met my girlfriend (after having stopped 3.5 years) and we both want to stop. Physical exercise is not really something I can do other than walking on average 30 to 45 min a day. Diet could improve, but is not bad.

[ChicagoGranny]

Physical exercise is not really something I can do other than walking on average 30 to 45 min a day.

That's good enough if you can do 2.4 to 3.6k (pace of 4.8k per hour). You don't need to do more distance for good sleep hygiene.

[Pugsy]

Hmmmm. You have an auto adjusting capable machine and they have never tried auto mode (apap).
With Respironics machines the Flow Limitation flagging is only available when in Auto mode so the fact that you don't have an FLs flagged doesn't mean you aren't having any.
I prefer using auto mode just to turn on the FL flagging if nothing else even if we used a setting that mimicked cpap mode.
Those FLs are kinda important...so important that they are part of the auto adjusting algorithm. I always thought they should at least flag them in fixed cpap mode so we would know if they were happening or not....but they didn't ask me.

Are you comfortable with changing your own settings? If so we can try some things and just see if it helps you feel better or not.

One thing you can do if you want to keep the fixed pressure of 9...is go to apap(Auto) mode and set the minimum to 9 cm and the maximum to 9 cm...then the machine will work like cpap mode but FL flagging is turned on and if you are having very many they will show up.

If you want to really try something totally new just to see what happens...
Change to Auto mode and set the minimum to 9 cm and the max to 15 cm and turn AFlex on and set it to 2 (you can try all 3 settings including off and see which one just feels better to you and use the one that feels the best to you).
There's actually a demo available to easily test all the settings without going into the clinical setup menu area every time to change something.
You do need to go into the setup menu are to turn Flex on though...it may be turned off an you don't have any access to any of the Flex settings.
Do you know how to get into the clinical setup menu area where you can change things?
If not...go here and request the manual that explains how ...and also has some useful information about the various features of your machine. If you don't have it I suggest that you get it even if you already know the secret code to access the setup menu area.
https://www.apneaboard.com/adjust-cpap- ... tup-manual

Let's just see if the machine even wants to go higher for some reason. I have my doubts as to it doing much but if it doesn't need to do much then it won't do much. It wouldn't be totally impossible for you to be having a lot of Flow Limitations and we not know it because you are in cpap mode. A bunch of Flow Limitations could potentially disturb your sleep....so not impossible for there to be something going on that could be impacting how you feel. Worth checking it out just in case.
At a minimum...do the 9 cm minimum and max thing to get the FL flagging turned on but if you want to be real gutsy....let the machine auto adjust if it needs to. It won't do anything without a good reason.

[Sissy63]

It makes me angry that someone would suggest a benzodiazepine. I beg you NOT to go down that road to hell. Plus, it is the worse thing to do if you want your brain to heal and your body learn to sleep. I speak from experience!!!

[Camus]

It makes me angry that someone would suggest a benzodiazepine. I beg you NOT to go down that road to hell. Plus, it is the worse thing to do if you want your brain to heal and your body learn to sleep. I speak from experience!!!

I understand, I am witnessing first hand with my mother what dependence on a benzodiazepine can do. I'm sure this person that recommended this meant it well and that's what I thanked him/her for. But I am very weary to go down that rabbit hole. Thank you for you concern.

Hmmmm. You have an auto adjusting capable machine and they have never tried auto mode (apap).
With Respironics machines the Flow Limitation flagging is only available when in Auto mode so the fact that you don't have an FLs flagged doesn't mean you aren't having any.
I prefer using auto mode just to turn on the FL flagging if nothing else even if we used a setting that mimicked cpap mode.
Those FLs are kinda important...so important that they are part of the auto adjusting algorithm. I always thought they should at least flag them in fixed cpap mode so we would know if they were happening or not....but they didn't ask me.

Are you comfortable with changing your own settings? If so we can try some things and just see if it helps you feel better or not.

One thing you can do if you want to keep the fixed pressure of 9...is go to apap(Auto) mode and set the minimum to 9 cm and the maximum to 9 cm...then the machine will work like cpap mode but FL flagging is turned on and if you are having very many they will show up.

If you want to really try something totally new just to see what happens...
Change to Auto mode and set the minimum to 9 cm and the max to 15 cm and turn AFlex on and set it to 2 (you can try all 3 settings including off and see which one just feels better to you and use the one that feels the best to you).
There's actually a demo available to easily test all the settings without going into the clinical setup menu area every time to change something.
You do need to go into the setup menu are to turn Flex on though...it may be turned off an you don't have any access to any of the Flex settings.
Do you know how to get into the clinical setup menu area where you can change things?
If not...go here and request the manual that explains how ...and also has some useful information about the various features of your machine. If you don't have it I suggest that you get it even if you already know the secret code to access the setup menu area.
https://www.apneaboard.com/adjust-cpap- ... tup-manual

Let's just see if the machine even wants to go higher for some reason. I have my doubts as to it doing much but if it doesn't need to do much then it won't do much. It wouldn't be totally impossible for you to be having a lot of Flow Limitations and we not know it because you are in cpap mode. A bunch of Flow Limitations could potentially disturb your sleep....so not impossible for there to be something going on that could be impacting how you feel. Worth checking it out just in case.
At a minimum...do the 9 cm minimum and max thing to get the FL flagging turned on but if you want to be real gutsy....let the machine auto adjust if it needs to. It won't do anything without a good reason.

I saw your message right before I went to sleep, so I adjusted it before and decided to answer you today with the results. I cannot say I feel very differently, but I do think the sleeping experience with the mask was more pleasurable. I will see how this will go the upcoming days. Either way, thanks a lot.

Here's the screenshot (not sure if it's better or not, since some numbers are higher and others lower and I don't yet know the significance and importance of all of them:

Today2.JPG (172.36 KiB) Viewed 10311 times

[ChicagoGranny]

It makes me angry that someone would suggest a benzodiazepine. I beg you NOT to go down that road to hell. Plus, it is the worse thing to do if you want your brain to heal and your body learn to sleep. I speak from experience!!!

I understand, I am witnessing first hand with my mother what dependence on a benzodiazepine can do. I'm sure this person that recommended this meant it well and that's what I thanked him/her for. But I am very weary to go down that rabbit hole. Thank you for you concern.

I am sure these people took too high of a dosage for too long a period of time. I'm sorry for anyone who was so desperate and uninformed to do this. Anger should be directed at the doctor who didn't help them manage the drug properly.

Benzos are not the devil some would have you believe. Like any drug, they need to be used appropriately.

[Pugsy]

The whole idea with the changes I recommended was to make using the mask and machine more comfortable.
I didn't really expect to see much change in any of the numbers because they don't really need to be changed anyway and what I proposed wasn't expected to change anything all that much.
I learned a long time a go that simply being more comfortable can make a difference in how I sleep and when I sleep better I feel better.
I really didn't expect you to report a miracle with these settings. If they help it will be a gradual improvement.
Give yourself a couple of weeks at these new settings and see how things are going then. Give your body a chance to become adjusted.
After 3 or 4 nights get me a screen shot of the detailed report. I do better with the nightly detailed reports and the graphs than I do with just the statistics. But don't worry about doing one for last night at this time. I want you to have a few more nights at these new settings and then see what the detailed report might show.