Unsure about CPAP

[Pugsy]

I look at it this way.....anything that disturbs my sleep is unwanted even if there is no direct obvious physical symptom....like low oxygen levels.

An AHI of a very modest 10...means on average 10 times an hour...something wakes a person up and disturbs the normal sleep cycles which in turn then causes varies unwanted daytime symptoms from simply lack of good quality sleep.
AHI of 10 means on a once per 6 minute average something wakes a person up.
Imagine how crappy we might feel if a little devil was sitting in a chair next to our beds and once every 6 minutes that little devil reached over and either pinched our nose closed for at least 10 seconds or just poked us with a sharp stick.

Also remember the criteria....must last at least 10 seconds so all those times the air flow was only limited to 9 seconds...those don't count in the AHI but they very well sure could have caused sleep disruption.

I have no idea if your issues are related to your OSA or not but they might be ...either full or in part and why not at least try something that might work. You know already if you do nothing what the results will be.

[Ht538]

Pugsy, I know you are right...and I am going to persevere. I’ve just tried so many similar hopeful but perseverance intensive treatments the last few years, that didn’t pan out. I am a bit jaded and have to remind my self of your sentiment below a lot!
Please don’t let my negativity dissuade anyone from making suggestions. I usually eventually kick myself in the rear and take them to heart.

Reading folks input here is making me slowly warm up to acceptance with this whole thing. You all are proof it can be done and it can work. I hope I am as lucky as you all!

[Pugsy]

I hope that you get the help you need. I have no way to know if using cpap will help or not. Often a lot of unwanted symptoms get blamed on OSA when they aren't related to OSA at all but people still expect the machine to fix their problem even if it isn't related to apnea....and they are very disappointed when using cpap doesn't fix all their problems never mind that the problem was never related to the airway in the first place. Medication side affects is probably one of the main culprits because so often medication side effects also mimic known apnea related symptoms.

I also happen to have personal experience involving sleep issues that the machine can't fix. I don't always feel so great but at least I know that the reason isn't from sleep apnea.
There was never any doubt that I really needed cpap.....my REM AHI was near 60 and my oxygen levels dropped to the low 70s% and I had all the other typical symptoms. Massive killer headaches and my snoring would rattle the windows and my husband reported watching me stop breathing for prolonged periods of time.

So I started cpap...but while the bulk of my ugly symptoms went away....I still don't sleep so great but I know it's from other health issues.
I fixed what I could fix with cpap and I still battle the other stuff. Sometimes I win and sometimes the other stuff wins.
What I tell people is that while I don't wake up rearing to go run a marathon I at least don't wake up feeling like a just ran a marathon and got run over by a bus at the end.

I hear your frustrations about having tried so many other things to help you get to feeling better....I am in the process of doing that right now myself and have been for many years....trying to fix the other health issues that mess with my sleep and how I feel during the day.

I would rather try and fail than not try at all. I know for sure what the results are when I don't try something.

[kteague]

My real reason for even considering the pap is that there is some evidence that PTSD, nightmares and OSA, particularly in REM are related. So even if the usual health related concerns don’t *seem* to be an issue, I am still going to put aside my enormous pessimism about the treatment addressing physical health issues (I don’t appear to have any other than the OSA) in order to maybe address the mental health ones. It’s actually the only reason I was even able to get the study. i was repeatedly told I didn’t have any risk factors. I’ll keep folks posted on how things go to addressing my nightmares as none of the usual PTS treatments are helping. I would also urge folks with any mental health issues to get a study....there are numerous mental health comorbidities. Physicians shouldn’t deny us slender young non snorers the benefit of poly sonno graphs or pap treatment where indicated! So yes, I totally agree with you.

When we have multiple things going on where symptoms can overlap, a careful ruling out process can help clear the picture. Journaling can be helpful. I used to have bad dreams, so much I started writing them down. Had journaled about 50 of them and it quickly became apparent they had a theme. In every one someone or something was either suffocating, drowning, being injured in the face or chest, etc. Could this have been PTSD from childhood sexual abuse? Maybe. But the fact that those types of dreams stopped with CPAP use tells me the dreams were the mind's way of dealing with a physical sensation - apnea events. No amount of counseling would have helped those. Now, the other mental health issues of dark compulsions toward self harm benefitted from counseling and the healing therapy of a strong circle of support, which in my case was faith based. It would be interesting to see just how many of your issues resolve with consistent effective CPAP use. If even one or two things are off your list, maybe the others would be easier to address.

[zonker]

My real reason for even considering the pap is that there is some evidence that PTSD, nightmares and OSA, particularly in REM are related. So even if the usual health related concerns don’t *seem* to be an issue, I am still going to put aside my enormous pessimism about the treatment addressing physical health issues (I don’t appear to have any other than the OSA) in order to maybe address the mental health ones. It’s actually the only reason I was even able to get the study. i was repeatedly told I didn’t have any risk factors. I’ll keep folks posted on how things go to addressing my nightmares as none of the usual PTS treatments are helping. I would also urge folks with any mental health issues to get a study....there are numerous mental health comorbidities. Physicians shouldn’t deny us slender young non snorers the benefit of poly sonno graphs or pap treatment where indicated! So yes, I totally agree with you.

When we have multiple things going on where symptoms can overlap, a careful ruling out process can help clear the picture. Journaling can be helpful. I used to have bad dreams, so much I started writing them down. Had journaled about 50 of them and it quickly became apparent they had a theme. In every one someone or something was either suffocating, drowning, being injured in the face or chest, etc. Could this have been PTSD from childhood sexual abuse? Maybe. But the fact that those types of dreams stopped with CPAP use tells me the dreams were the mind's way of dealing with a physical sensation - apnea events. No amount of counseling would have helped those. Now, the other mental health issues of dark compulsions toward self harm benefitted from counseling and the healing therapy of a strong circle of support, which in my case was faith based. It would be interesting to see just how many of your issues resolve with consistent effective CPAP use. If even one or two things are off your list, maybe the others would be easier to address.

thank you for sharing that! i don't believe i've read your story before.

[Ht538]

KTeague - Thanks for sharing and the journaling is a great idea!
The nightmares are recurrent of the same issue and not at all related to suffocating or drowning, etc. but the traumas related to the PTSD. I still think there is a sleep nexus since I understand that being aroused while dreaming can actually disrupt your processing of those memories and make them stickier in essence and more disruptive. Ive also been told OAS can trigger the stress response and exaggerate the hyper vigilance that comes with it. It’s really the most disruptive and one of the last PTS issues that I need to learn to cope with.

ADD symptoms can be aggravated by disrupted sleep and in some cases the two issues can be co-morbid and even result in a misdiagnosis particularly in kids. My 8yo also has ADD so I have learned all about the links! My ADD is well managed w/o meds but I am curious if any symptoms improve. Would be a bonus!

I know that nothing is likely to be a panacea, but the more i hear from folks and think about it, the more I am hopeful that I’ll at least get some relief/benefit somewhere that will make it worth the effort.

Ive gotten to a place where I can manage most of the other issues, just the sleep piece lingering and getting that improved., as I am sure anyone on this site can attest will make dealing with the rest so much easier.

I don’t know where you are with your mental health care, but if it’s something you are still working through, consider asking about complex PTSD given the nature of what brought you there (it’s also my particular flavor). It’s a pesky twist on the kind of PTS typically associate with singular isolated traumatic incidents but really helpful to understand in terms of those negative voices and impulses and how to manage them. And of course the support network doesn’t hurt

[Ht538]

Just had my titration study...I am ready to give up. I am so tired I don’t even think I should drive home. Everyone says you ‘get used to it’ but I don’t understand what people are doing until that. I don’t have a sleep reservoir of any kind so a night like last night and the bottom falls out. I am a working single parent and don’t have the luxury of just taking a nap if the night doesn’t go well. The tech wouldn’t even tell me if I slept and says I get the machine based on what the dr decides.
My head hurts, my nose hurts and I feel like all of the water has been sucked out of me. It’s been over an hour since I took the mask off and I still have lines all over my face. I was hot and cold all night and my feet and hands kept feeling like they were falling asleep. Tech said she hadn’t heard of that before but everything was ok. It felt like my body was falling asleep starting at my extremities, but no explanation. None of this makes any sense to me and everyone just keeps saying you get used to it, but what do you do until that happens. I don’t think I’ve gotten less sleep in a night since I was in labor with kids. I am despondent.

[Julie]

Don't despair - the techs doing the titration would have tried worst-case scenarios by giving highest and lowest examples of stuff to see how you reacted, so you probably would feel awful now... but don't take any of it as examples of how your normal every night therapy will go. The only thing that made me wonder for a sec was to ask if in fact there's any chance you could incidentally be catching a bug, flu, etc, because of some of your symptoms in the lab... unlikely I guess, but you never know. See what the doctor says when results are back and let us know what was advised.

[zonker]

Don't despair - the techs doing the titration would have tried worst-case scenarios by giving highest and lowest examples of stuff to see how you reacted, so you probably would feel awful now... but don't take any of it as examples of how your normal every night therapy will go. The only thing that made me wonder for a sec was to ask if in fact there's any chance you could incidentally be catching a bug, flu, etc, because of some of your symptoms in the lab... unlikely I guess, but you never know. See what the doctor says when results are back and let us know what was advised.

+1

[Pugsy]

Well...sounds like you had the tech from hell...like I did when I had the in lab titration.
Woke up with massive headache, slept horribly, and my blood pressure was like 200/130...

[Ht538]

Pugsy - I had horrible blood pressure too! And mine is normally like 105/75. It really kinda freaks me out that I normally don’t have these kinds of issues, but did last night. I am not a headache person either. It’s a bit disconcerting that my biggest complaint has been fatigue but the titration brought on all this other physical stuff. I’m some ways, it makes me question the whole diagnosis to begin with and is feeling more and more like a shit in the dark. I also don’t want to cause problems I don’t currently have!

And the hot/cold seemed and numb hands and feet seemed to be coincident to how much I felt like I was struggling to breath.

[kteague]

Please know that the night in the lab is a search for an effective pressure, which means you're at an ineffective pressure during the night until they incrementally get to a place that works for you. The difference when using CPAP at home is you will be at an effective pressure all night and you will be in your famiiar comfort zone. Totally different experience.

[Pugsy]

My point was that despite an absolutely horrible titration night....things do get better and we do get past it and we do improve.
It will be 11 years this coming May that I have been using cpap. I have no idea what caused the really high BP. Maybe related some how to the barely 2 hours of piss poor sleep I got that night from fighting with the idiot tech. The headache was probably BP related.

Our bodies react strangely when under stress and we get symptoms that we don't normally get.

I will tell you this...using cpap and the mask every night has been a cake walk compared to that night.

[Miss Emerita]

What a shame you had such a lousy titration experience. But as everyone is saying, don’t let it rattle you. Once you are home you will be able to take steps to adapt and adjust, on your own schedule. And remember, people here will help you solve problems large and small.

[Ht538]

Miss Emerita, just noticed your avatar...I love it!