Doc says 20% don't get better on CPAP

avi123 wrote:IMO, there are posters who post here sensational exaggerated posts to satisfy their fancy or are craving for attention stubbornly.

Um, pot? Meet kettle.

avi123 wrote:Ok, let's not waste time and just be true to our mission.

Will it self destruct in 30 secs? Or do you have a phone in your shoe?

I have been treated for sleep apnea only about a month, so far I feel pretty much the same during the day. I need my caffeine. I still am a bit sleepy during the day. I still am waking with a headache most mornings. However, I am still fussing with masks to I am hopeful these things will improve.

The big difference in my sleep and in feeling better came before the apnea treatment. Two things happened. First, I lost a lot of weight, nearly 20% of my highest weight. No longer did my back ache when I turned over in bed. No longer did I feel the oppressive weight of myself when lying in bed. Second, I started taking drugs for RLS. I had resisted avoided doing anything about it for years. Finally I could go to sleep without getting up and walking around and kneading my calves and finally taking a sleeping pill to sleep.

However, there is one improvement that I have noticed. Not once have I awakened choking and unable to breathe. That is a good thing. I am less afraid to go to sleep.

BrianinTN wrote:I've been quietly (until now) following this thread too. I'm stunned at the audacity and insensitivity of that last comment. Just wow. Since Avi decided to "foe" me the last time I snapped at him for being rude and offensive, I won't bother to preach to the choir about how incredibly wrong that statement is about the vast, vast majority of people. I really empathize with those of you who aren't getting the relief you hope or expect while on xPAP, and that goes double for many of our posters who are suffering from a combination of sometimes-reinforcing medical problems.

I know I first came here because I saw it as a support community -- and I definitely didn't feel like I was getting support from my medical team. And if people just want to vent a little, I say more power to them. At least you'll get some sympathetic ears here, and that mental therapy will on some days be even more helpful than the physical therapy you hope to get from your xPAP!

Great post BiraninTN! Agree 100%

jnk wrote:...but a person whose nervous system has become particularly sensitive to his imperfect sleep-breathing (as in a UARS-leaning patient) will likely need some self-tweaking and work that the other fellow doesn't need, and CPAP may not even be the best treatment for him...

I added the emphasis--jnk, could you say more about that part?

Jade wrote:

jnk wrote:...but a person whose nervous system has become particularly sensitive to his imperfect sleep-breathing (as in a UARS-leaning patient) will likely need some self-tweaking and work that the other fellow doesn't need, and CPAP may not even be the best treatment for him...

I added the emphasis--jnk, could you say more about that part?

I am of the (nonprofessional) opinion that some mild-OSA patients can be just as super-sensitive to PAP therapy as some UARS patients seem to be and that such patients therefore may not respond as quickly and as well to PAP therapy as many moderate-to-severe OSA patients do.

Taking the extra time to get used to CPAP and paying particular attention to comfort tweaks may help some of those patients. Others may need custom-tweaked bilevel instead of straight CPAP. Others may not do well on any of those treatments because of exceptional sensitivities to pressure and the brain's remaining sensitive and unaccepting to any mask tried.

In other words, some of those sensitive people (medically speaking) may never respond well to PAP therapy no matter what they do or how well they do it. Those people may eventually want to try the alternatives to PAP therapy.

For example, mandibular advancement devices (MAD) have come a long way of late, in my opinion, and if a person who is sensitive to xPAP finds that he also happens to be responsive to MAD, I say go for it. The MAD may only reduce AHI (roughly speaking) by 50% in 50% of patients, but if a person is one of those 50% of patients who respond, lowering AHI by 50% may be enough for that person to feel rested in the mornings and to have no particularly significant O2 desats either.

I happened to be one of the people with severe OSA who took to the therapy right away and saw results. But I have read enough here and elsewhere to understand that it wasn't willpower that got me where I am, it was simple response to therapy. However, if someone else gives the therapy the full shot and can't make it work because it makes him sleepier and more fatigued, no matter what he does, then things like dental devices and surgery become a viable alternative, and there is certainly no shame in them. So, even though this place is called CPAPtalk.com, those people should be very welcome here and should never be labeled anti-PAP-therapy or shunned as nonbelievers, as it were, if you will.

I firmly believe that PAP should always (well, nearly always) be the first choice for treating OSA, even very mild OSA. I don't like that the AASM considers dental devices a viable FIRST choice. I disagree with that very strongly. BUT, once PAP therapy has been thoroughly explored as a first choice, in that it has been given enough time and effort, I fully support moving on to the generally-less-effective, but possibly still effective enough, treatments that are available to someone in that situation.

That was probably much more information about my opinions than you were looking for, but hopefully you can sift any wheat from the verbose chaff in the above. I just like hearing myself type. So, thanks for asking!

Thanks; a well-balanced and thoughtful response, indeed!

(I also like to hear and esp. feel myself typing. I'm very particular about the clickety-clackety sound and touch of any keyboard I use!)

My only observation from this post is that there are other factors that may interfere with feeling sluggish.

There are probabaly tons of people who don't have sleep apnea and 5-Hour Energy is making a fortune on them.

For the last 2 weeks I have been working on an audit at work and my numbers are so bad I have to check to see if my hose is still connected. But I have put in a lot of tedious hours, been having a tough time sleeping, eating whatever, and not exercising is probably doing me more harm than my lack of therapy.

It is a journey and as long as a person is trying to get this xPAP going in the right direction, that should be applauded.

I can't comment on the brain damage... but opinions on considering cell phones, smog, even alcohol being harmful, I can't imagine that we don't all have some brain damage from something.

Right now I look forward to the day when what I don't know can't hurt me.

John

Does anyone here suffer from both osa and narcolepsy?