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I thought I was supposed to feel better - usertc - 11-15-2015
I was first diagnosed in 2009 with 39 events/hour. I used an Autopap for 3 or 4 months and the longer I used it the worse I felt, in general, fatigue, headache, memory, and inability to concentrate, etc. I also have asthma and my lungs burned the entire time I used it, not just while I used it, but all day too. I wasn't getting much support from my sleep dr and I finally gave up and returned the machine.
I've been fighting frequent migraines for over 10 years and went so far as to have a total hysterectomy in an attempt to end them. It helped by lowering intensity and frequency, but I'm still fighting them. My neurologist said I'm not going to get them under control unless I deal with the sleep apnea.
So I had another sleep study done and now it's 50 events/hour and O2 dropped to 80%. I've been using an Airsense Autoset for her for 2 1/2 weeks now. My numbers are pretty good with less than 2 events per hour, but once again, I'm feeling worse and worse. I've got a killer migraine the last few days and feel like my brain is in a fog. I'm frustrated and discouraged. I see my dr again on the 29th so I'm hoping he can figure out what's going on.
I guess I'm not really asking anything, just venting.
RE: I thought I was supposed to feel better - PoolQ - 11-15-2015
There are two things happening at the same time.
The first is the therapy and that seems to be going just fine.
The second is comfort settings, if you are not comfortable you will not get good sleep no mater what the therapy settings are doing.
What do you feel when you are using the machine? Is it easy to exhale? do you feel congested? Is the mask leaking? Does it bother you? Have you tried different temperature and humidity settings? Are you sure they are set correctly?
RE: I thought I was supposed to feel better - zonk - 11-15-2015
Hi usertc
Sorry, you're having these problems, not all problems are CPAP related, CPAP helps keep the airways open while sleeping and that can have some positive overall effects
I notice you're using AirSese 10 Autoset at 4-12, might be a good idea to download SleepyHead http://www.sleepfiles.com/SH2/ to see what is really going on with some graphs, such as leak, pressure, snore, flow limitation. Some people are happy to start at 4 but for me would feel like not getting enough air, feel more comfortable with minimum pressure closer to my therapy pressure ... YMMV
Something to talk with your doctor about
RE: I thought I was supposed to feel better - DariaVader - 11-15-2015
- make sure humidifier settings are right - too little or too much and it will cause killer sinus headaches
- check to see if you are retaining water (gained 5 lbs or more, feet and/or eyes swollen...) I find I get killer headaches when I am retaining water and there are a bunch of us who retain water in response to cpap along with mitigations
RE: I thought I was supposed to feel better - archangle - 11-15-2015
Sometimes, apnea is a bit like smoking. Your body has adjusted to it and you're out of kilter when you stop until it readjusts.
There can also be a number of adjustments that can be made to your therapy.
RE: I thought I was supposed to feel better - cate1898 - 11-15-2015
usertc, being a lifelong migraine sufferer myself, I truly sympatize with you. It is terrible to have chronic frequent migraines. Hard for anyone who is not a migraine sufferer to comprehend. I sure hope they find out what's causing them and hopefully you can get them under control. I don't know your age but sometimes migraines become less frequent/less severe as we get older, possibly due to onset of menopause or peri-menopause. Good luck with your therapy!
Keep us posted.
RE: I thought I was supposed to feel better - trish6hundred - 11-15-2015
Hi usertc,
I’m sorry you aren’t feeling any better but don’t give up. I know it’s discouraging but sometimes it can take a while to notice improvements with CPAP therapy. Let your doc know about this and hopefully, he/she can come up with a better solution for your migraines.
Hang in there for more responses to your post.
RE: I thought I was supposed to feel better - DumfriesDik - 11-16-2015
That all sounds quite terrible. Sleep is such a personal thing and the smallest change can make a huge difference. I am sleeping a bit better due to a new mask for example, not a different one, just new. I guess I am not advising, just listening. All the best.
RE: I thought I was supposed to feel better - Phill - 11-16-2015
"I thought I was supposed to feel better"
Exactly!! going from a long nights sleep, which I was informed by the experts was a very poor sleep, I now wake in the early hours every morning, feeling little or no better for the rest of the day, though according to the data I am sleeping better during the time I am actually asleep.
This is progress?
RE: I thought I was supposed to feel better - I_will_never_sleep_again - 11-18-2015
(11-16-2015, 11:40 AM)Phill Wrote: "I thought I was supposed to feel better"
Exactly!! going from a long nights sleep, which I was informed by the experts was a very poor sleep, I now wake in the early hours every morning, feeling little or no better for the rest of the day, though according to the data I am sleeping better during the time I am actually asleep.
This is progress?
I have been doing this for almost 2 weeks now. I feel your pain. I used to get 8 hours of bad sleep, now I get zero hours of sleep at all. Which is worse? I have bought and tried 4 masks already, went back the first one.
Can't exhale against pressure, can't stop mask leaks. I can probably get used to wearing a mask, but the other things are not ever going to be something I can live with.
Everyone says download software, but what good is it when you can't ever go to sleep with the machine on even after 9 hours.
I feel 10x worse than before, and lack of sleep is what has always set off my A-fib.
I see my dr. 2-morrow, but if he just says keep trying, that will be $195, I am going to adjust my own pressure down a little at a time until I find a pressure that I can sleep with, Then maybe I can slowly raise it as I get more time using it.
It's either that or just giving up. I would think it would be better to sleep with a lower pressure than no sleep or no mask. Maybe I am wrong about that, but I am new to this.