Post Reply 
I thought I was supposed to feel better
Author Message
usertc Offline

Preferred Members

Posts: 32
Joined: Oct 2015

Machine: ResMed AirSense 10
Mask Type: Nasal mask
Mask Make & Model: F&P eson
Humidifier: integrated
CPAP Pressure: 4 to 14
CPAP Software: Not using software

Other Comments: AHI= 50 with asthma, GERD, and chronic migraines

Sex: Female
Location: California

Post: #1
I thought I was supposed to feel better
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. Sad I guess I'm not really asking anything, just venting.
11-15-2015 04:04 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
PoolQ Offline

Advisory Members

Posts: 986
Joined: Jul 2015

Machine: AirCurve 10 VAUTO
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Integrated
CPAP Pressure: 6.2, 15, PS4.0
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Sillicon Valley

Post: #2
RE: I thought I was supposed to feel better
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?
11-15-2015 04:27 PM
Find all posts by this user Post Reply Quote this message in a reply
zonk Offline

Advisory Members

Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #3
RE: I thought I was supposed to feel better
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
11-15-2015 05:00 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
DariaVader Offline
Apnea Board Facebook Editor
Monitors

Posts: 1,819
Joined: Nov 2014

Machine: Resmed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: Airfit P10 for Her
Humidifier: H5i humidifier with ClimateLine heated hose
CPAP Pressure: 8-15
CPAP Software: SleepyHead

Other Comments: diabetes II, Thyroidectomized, Primary Immune Deficiency, and the list goes on :P

Sex: Female
Location: Oregon

Post: #4
RE: I thought I was supposed to feel better
- 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

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
11-15-2015 05:15 PM
Find all posts by this user Post Reply Quote this message in a reply
archangle Offline
Wiki Editor
Advisory Members

Posts: 3,159
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #5
RE: I thought I was supposed to feel better
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.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
11-15-2015 07:01 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
cate1898 Offline

Advisory Members

Posts: 781
Joined: Aug 2015

Machine: PR System One 560BT Auto
Mask Type: Nasal pillows
Mask Make & Model: P10's/backup-DreamWear
Humidifier: PR attached
CPAP Pressure: 8.5 - 13. A-Flex 3
CPAP Software: SleepyHead

Other Comments: Began CPAP Therapy Sept. 11, 2015. Hx Hypertension, Post Graves Disease, chronic migraines.

Sex: Female
Location: Southern Ontario//SW Florida

Post: #6
RE: I thought I was supposed to feel better
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.

APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

-------------------------------------------------------------------------------------------------
EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
11-15-2015 07:02 PM
Find all posts by this user Post Reply Quote this message in a reply
trish6hundred Offline

Advisory Members

Posts: 6,430
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #7
RE: I thought I was supposed to feel better
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.

trish6hundred
11-15-2015 07:12 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
DumfriesDik Offline

Preferred Members

Posts: 71
Joined: Nov 2015

Machine: Resmed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Philips Respironics Nuance
Humidifier: none
CPAP Pressure: auto 4 - 20
CPAP Software: SleepyHead

Other Comments: 2010 - 2015 S8 Escape; 2015 - Date S9 Autoset

Sex: Male
Location: SW Scotland

Post: #8
RE: I thought I was supposed to feel better
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.
11-16-2015 01:13 AM
Find all posts by this user Post Reply Quote this message in a reply
Phill Offline

Preferred Members

Posts: 90
Joined: Nov 2015

Machine: ResMed S9 Auto Set
Mask Type: Full face mask
Mask Make & Model: ResMed AirFit F10
Humidifier: ResMed H5i, with heated hose
CPAP Pressure: unsure
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: UK, sunny south coast.

Post: #9
RE: I thought I was supposed to feel better
"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?
11-16-2015 11:40 AM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
I_will_never_sleep_again Offline

Preferred Members

Posts: 96
Joined: Nov 2015

Machine: Resmed airsense 10 elite
Mask Type: Nasal mask
Mask Make & Model: Dreamwear
Humidifier: unsure
CPAP Pressure: 16rx now using 13
CPAP Software: SleepyHead

Other Comments: Was diagnosed after multi A-fib events at night

Sex: Male
Location: indiana USA

Post: #10
RE: I thought I was supposed to feel better
(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.
11-18-2015 01:11 PM
Find all posts by this user Post Reply Quote this message in a reply
Post Reply 


Possibly Related Threads...
Thread: Author Replies: Views: Last Post
  1 night off of cpap.....feel great! duece12345 6 515 10-31-2016 08:55 AM
Last Post: robysue
  I Feel So Dumb - Climateline Hose Violetskyye 14 825 10-08-2016 11:15 PM
Last Post: Violetskyye
  Just when I thought you guys were geniuses.....this happened.... Daisylouu 4 434 09-29-2016 01:19 PM
Last Post: Daisylouu
  New AHI Low but Didn't Feel That Great holden4th 1 265 09-09-2016 04:59 AM
Last Post: DeepBreathing
  I have gained 10 lbs and I never feel rested on cpap Lalae 18 1,020 09-08-2016 05:59 PM
Last Post: doll
  New CPAP user feel like crap markrb 20 6,524 09-06-2016 07:24 AM
Last Post: mikeindc
  How long does it take to feel better? Greendog 5 614 07-21-2016 08:10 AM
Last Post: OpalRose

Forum Jump:

Who's Online (Complete List)