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[CPAP] Overwhelmed and Confused!!!
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Wamphry Offline

New Members

Posts: 1
Joined: Mar 2016

Machine: AirCurve 10 VAuto with HumidAir and ClimateLineAir
Mask Type: Full face mask
Mask Make & Model: Respironics Amara
Humidifier: Aircurve 10 VAuto
CPAP Pressure: 16/20
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #1
Gross Overwhelmed and Confused!!!
Some history on myself...
Apparently from my Dr's opinion, I have had sleep apnea starting in my early teens. I'm 41 now. I suffered from low energy, easily fatigued, low testosterone (not low enough for replacement therapy), inability to control my weight (no matter how much I dieted and/or exercised, could not lose weight), low libido and erectile dysfunction (started being treated for ED at age 27, when V***** came on the market...was a lifesaver for me)...I have spent my life trying to figure out why, researching online, asked many of my Doctors what it could be, but they all told me I was healthy until 8 years ago I was diagnosed with severe sleep apnea...I opted for surgery, which I am thankful I did...here is why. My first Dr to diagnose it was an ear, nose & throat guy and he told me that my genes had gifted me with a nasal structure built for near arctic conditions. He said my turbinates were overdeveloped and they are used for warming and humidifying cold dry air before reaching the lungs. I also had a broken nose that I had since childhood that was obstructing one side of my nose...needless to say I had always been a mouth-breather because my nose was always clogged and next to useless for breathing. Because of only being able to breathe from my mouth I developed severe claustrophobia of anything touching my face or covering my mouth. So on to the surgery... I had my nose re-broken and reset, turbinate reduction, tonsils, uvula and adenoids removed. It was brutally painful for months after, I had to re-learn how to eat and drink without choking, I am still glad I went through it because I can breathe fully through my nose now. The surgery worked...I dreamed again, something I hadn't done since childhood, I felt great, started losing weight, life was amazing for 6 months...then it slowly reversed and by a year later I had given up on it.

6 months ago....
I felt like a zombie, exhausted all the time, falling asleep driving, during meetings, even during sex, low libido, needing to sleep as soon as I got out of work, waking up 4-10 times a night, gaining weight. God bless my amazing fiance, she put up with it, I kept promising I would see a Dr to find out what was wrong for 3 years. She would keep one leg on my legs while sleeping and if I stopped snoring and stopped kicking in my sleep she would wake up to give me a shove to start my breathing again. Finally, I had had enough and made appointments with multiple Dr's. Finally one listened to me and actually looked at my records and told me that my symptoms were all likely due to apnea. Off to a sleep study I went.

Results: AHI 92.7 with blood oxygenation levels dropping to 66%

Next step, Titration study...that went badly as well...lowest they could get my AHI was 21 with full face mask pressure @ 14 / 18. Well I was prescribed a ResMed VAuto 10 with Amara mask. I have been struggling with it for a month now...Mask leaks due to drooling, and AHI averages 20 - 31.

I am feeling 100% better so it's definitely working, no more daytime sleepiness, no chronic exhaustion, lots of energy I never knew I had (my girl now has to tell me to shut up up and slow down because when I get excited I talk too fast), ED and low libido issues are fading. Life for me has improved drastically. I am still worried because My Dr says my AHI needs to be <=5.

They sent me a new mask because of all the leaks, forget the name, it came with three sizes of cushions and that was a fail...uncomfortable, had to make it so tight I would have lines on my faces for hours after waking up, no effect on AHI at all. had to go back to my comfortable but leaky Amara mask, they are sending me a larger size cushion for it now...I ordered mask liners which my fiance laughingly calls "Masky Pads" Oh-jeez ... My Dr upped my pressure to 16 / 20 which just ruled out being able to use the liners because they leak too much at that high of a pressure. Ugh, I even downloaded and installed sleepyhead so I can learn how to improve my AHI. I can read some of it, I can see it's really bad with a large amount of OHA events. The software is pretty overwhelming and I don't know how to read it, much less what can be done to improve my numbers.

Any help on being able to read my results and learning to get my AHI in check would be greatly appreciated. I am still not dreaming which is my sign that I am not doing all that well and on the right track. I get this under control and I plan to lose some weight and hopefully lower my pressure, get one of those comfy nasal pillows.
03-17-2016 08:40 AM
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Crimson Nape Offline

Monitors

Posts: 1,325
Joined: Oct 2014

Machine: ResMed S9 Autoset
Mask Type: Other
Mask Make & Model: P-10 / F&P Simplus / DreamWear
Humidifier: H5i w/Climateline
CPAP Pressure: 8 - EPR 3
CPAP Software: SleepyHead

Other Comments: CMS-50F & 50IW

Sex: Male
Location: Georgia

Post: #2
RE: Overwhelmed and Confused!!!
Hi Wamphry!

Welcome to the forum.

Here are some links to better understand the data in SleepyHead.
SleepyHead Guide:
http://sleepyhead.sourceforge.net/wiki/i...SleepyHead

Video:
https://www.youtube.com/watch?list=UUg_R...r_embedded

I hope this info will help you.

Statistics prove that people who have more birthdays live longer.
03-17-2016 10:20 AM
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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: #3
RE: Overwhelmed and Confused!!!
Hi Wamphry,
WELCOME! to the forum.!
I know all of this is overwhelming but just stick with it.
I wish you much success with your CPAP therapy and hang in there for more responses to your post.

trish6hundred
03-17-2016 06:10 PM
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Canuck 2 Offline

Preferred Members

Posts: 23
Joined: Dec 2015

Machine: Resmed A10
Mask Type: Nasal pillows
Mask Make & Model: Resmed p-10 or swift FX
Humidifier: A10
CPAP Pressure: max 8.4- min 7.8 locked
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Canada

Post: #4
RE: Overwhelmed and Confused!!!
Well it sounds like you are doing a lot better and time will more than likely straighten the rest of your body internals as they come out of hibernation.
As we get a little older we change and things such as reading glasses are needed and so on ..... all the best.(sounds like the last doctor that diagnosed you is the one that you should see.)
03-19-2016 08:25 AM
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woozie38 Offline

Advisory Members

Posts: 248
Joined: Jan 2013

Machine: Fisher & Paykel Icon + Auto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: Integral
CPAP Pressure: 8 to 14
CPAP Software: SleepyHead Other Software

Other Comments: 17 years of CPAP + supp. oxygen @ 3 L/min

Sex: Male
Location: Toowoomba, Queensland Australia

Post: #5
RE: Overwhelmed and Confused!!!
(03-17-2016 08:40 AM)Wamphry Wrote:  I felt like a zombie, exhausted all the time, falling asleep driving, during meetings...
Hi Wamphry,
Your story is similar to mine. High AHI & low O2 sat. is a disastrous combination, one that can be at least reduced by CPAP. As you can see I have been on APAP therapy a long time & I've had some of the surgery you've had.
Attempting to find causes & solutions, I have visited many different doctors. One thing becomes obvious, the need of PAP therapy and for this to be effective, the right mask and right pressures must be found & used. And herein lies the problem. Not a lot of so called sleep specialists know as much as many of the members of this forum, therefore specialists can only suggest possible solutions. Some may work for you, some may not, but here are some ideas that everyone here will support.
1. Try get get into a regular sleep regime. Go to bed at the same time each night & avoid drinking water or any stimulants close to bed time.
2. Relax during the time leading up to bed time and shower, then visit the bathroom last thing before retiring.
3. Absolutely avoid sleeping in the supine (on back) position.
4. Remove any entertainment devices such as radios, TV or computers, from your bedroom, make sure this room is dark, quiet & comfortable.
5. Regularly visit this forum & try most of the suggestions offered.

When using an APAP type machine, the pressure will increase as airway tissue vibrations are detected. Pressure rises will cause mask leak rates to also rise, so that if mask leaks are a problem for you, it may well be a sleep position issue, causing your machine to detect the possible onset of an an apnoic event & increasing pressure.
Mask leaks will not of themselves defeat your therapy. Sometimes it's necessary to simply turn off your machine to reset it back to the comfortable min. pressure, before attempting to return to sleep. It's not a good idea to tighten mask straps unless they are actually too loose. Tightening will often increase the leaks. Lastly, I have to say that in the end it becomes a compromise between what your would like to achieve, & what you actually do achieve & I hope the difference for you is very little.

[Image: signature.png]Keep on breathin'
03-19-2016 08:16 PM
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