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Fed up CPAP User
#1
Question 
Fed up CPAP User
I've had a resmed sleep machine, full facemask and an oxygen concentrator since March. I'm pretty good and trying most things out to help improve my health a little. I'm really fed up annoyed irritated with this whole thing. Yes it might be helping to stop with the headaches bit it's not actually helping go to sleep. I don't have any stresses as such. The oxygen is Noisey. And I've tried 2 other machines to see if it's any quieter. I'm still awake at 1.40am. I'm going to a sleep clinic check up at The Royal Brompton on the 11th not really sure what expect or ask. I think it's just a day thing. Just having a Moan. Also lost the SD card at the moment and that stopped recording. I feel wide awake at the moment. Yet around 2pm most afternoons I can get some sleep. I have a heart condition. Sorry if this is in any wrong place.
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#2
RE: Fed up CPAP User
(07-01-2017, 07:45 PM)Sleep1ngb3auty16 Wrote: Yes it might be helping to stop with the headaches bit it's not actually helping go to sleep.

At first it will actually make it harder to fall asleep because of the mask, hose, pressure, and noise. The noise can be drowned out with a fan or white noise generator, or you can wear ear plugs. The other stuff you'll adapt to.

The thing is, if you have sleep apnea then the sleep you think you're getting without the machine is an illusion. You're waking repeatedly to breathe with no memory of it, you're wearing out your cardiovascular system, and it's having a negative effect on the quality of your life.

Quote:I'm going to a sleep clinic check up at The Royal Brompton on the 11th not really sure what expect or ask.

They will hopefully check the data on your SD card and evaluate the effectiveness of your therapy. Just tell them what you're telling us. That's all you need to do.

There are two things you can do. One, just stick with it and I promise it will get better. The other is learn how to check your own data.
Sleepster
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www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Fed up CPAP User
any sd card will fit your machine, you need the data.
do you have an overnight o2 recorder? if you need to self fund, 40 quid from ebay for a cms-50f The machine and o2 meter will keep you fully informed about your treatment.

now as to sleeping with it. fan/white noise and google 'sleep hygiene' there is a lot you can do. I also think your circadian rhythms out, they may help you adjust your body clock. see what they have to offer and google lots.
I actually use a drug, valdoxan for resetting my sleep pattern
new http://www.apneaboard.com/wiki/index.php...re_success
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
From machine or charts for auto-cpap, set the min at 'med' median pressure, or 2cm below 90/95%. max at 20cm for now. Forum will help you fine tune settings
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#4
RE: Fed up CPAP User
Hang in there, it took me 8 months to get all the little adjustments fine tuned, from then on it started to get better.

Now, 16 months down the track, I fall asleep in a couple of minutes most nights, and I sleep more soundly than I did over the last 10 years or more.
I also had to train my brain to let me sleep, I'm one of those with a mind that never stops thinking and never shuts down.
My pre-sleep CPAP routine when getting in to bed is part of what I use to trigger my brain to get ready for "sleep mode" for the night, using CPAP has helped me find a way to actually get to sleep quickly, and to go back to sleep quickly if I'm up in the night for a wee-walk.

You will have AHI spikes, and nights where you struggle to get a good night's sleep, but they are rare once you are in to the routine with the machine and mask sorted for your needs.

But you can get there.
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#5
RE: Fed up CPAP User
(07-01-2017, 07:45 PM)Sleep1ngb3auty16 Wrote: I've had a resmed sleep machine, full facemask and an oxygen concentrator since March. I'm pretty good and trying most things out to help improve my health a little. I'm really fed up annoyed irritated with this whole thing. Yes it might be helping to stop with the headaches bit it's not actually helping go to sleep. I don't have any stresses as such. The oxygen is Noisey. And I've tried 2 other machines to see if it's any quieter. I'm still awake at 1.40am. I'm going to a sleep clinic check up at The Royal Brompton on the 11th not really sure what expect or ask. I think it's just a day thing. Just having a Moan. Also lost the SD card at the moment and that stopped recording. I feel wide awake at the moment. Yet around 2pm most afternoons I can get some sleep. I have a heart condition. Sorry if this is in any wrong place.

Welcome, and best of luck with the NHS.

I have complained about them so much on here our, American friends are probably fed up with me.

Should you despair of the incompetence of the department that is supposed to be looking after you, it may cross your mind to pay to see a consultant at a cost of around £175, mine was a waste of time, but for goodness sake try and make sure they have nothing at all to do with the people treating you at the hospital.

Once again, the very best of luck.

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#6
RE: Fed up CPAP User
Research Noise Reducing Molded Foam for Oxygen Concentrator and you may find some help with noise reduction. You may also try an anti vibration mat or some Brits apparently think the Airsep visionair home oxygen concentrator is very quiet. I was able to get this info within minutes so much help is available on-line.
Coffee

Happy Pappin'
Never Give In, Never Give Up




INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. 
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#7
RE: Fed up CPAP User
Thanks for the suggestions. I can usually cope and tolerate most things. Not overly keen on taking any more medication as I have heart and lung tablets. The Royal Brompton is like my 2nd home. Been going their all my life. And I've got some vety good consultants that i can turn ti. Sleep doctor seemed to think it was more insomina than sleep apena. I'll just have to work through it. I was awake at 3am last night. My eyes just don't feel tired. I'll try and put in my sd card from camera and see if I can get a decent reading.
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#8
RE: Fed up CPAP User
Hi Sleep1ngb3auty16,
WELCOME! to the forum.!
I know you are having a rough time with CPAP therapy right now, but it takes time to get used to. I encourage you to just stick with it, it does get better after some time.
Good luck on your journey and hang in there for more responses to your post.
trish6hundred
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#9
RE: Fed up CPAP User
Hiya

It took me quite a while to get used to air blowing in my face, in my mouth, in my nose, air leaking, farts, air escaping through using a full face mask. Massive air leaks really disturbed my sleep and soon made me anxious about sleeping as to fall 'asleep' would mean disturbance. And I thought CPAP was supposed to give me better sleep!!!

Through reading many many posts here by others and encouragement to start my own thread, the experienced guys here helped me get to a pressure that suited and the change to nasal pillows helped it all calm down.

A soft cervical collar helps keep my chin up which I am sure helps to open my airways whilst asleep but air is still leaking a little through my mouth opening subconsciously whilst asleep. However sleep is generally more restful with AHI reporting below 1 most nights even though I still have some way to go to get more wakeful energy. A chin strap is on its way to help further-will have to see. Next step may be a memory foam pillow but I am experimenting to sleep more at an incline and on my left.

So it is a journey which for most of us takes a bit of time. Some are lucky to hit it home in one but generally you will read that most of us have had to keep at it. Get some data through sleepyhead and post it here. I promise you, the guys here are amazingly patient and smart and will surely take you through finding your sweet spot.

I wish you the very best sleep.........
Sleepyhead in 5 easy steps
Beginner's Guide to SleepyHead

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: Fed up CPAP User
Oxygen concentrators are actually quite rhythmic, but I know some folks are extremely sensitive to sound. I use an ocean waves sound to drown out my cpap and tinnitis or I can't get to sleep either. My machine is quiet, but the mask sounds like Darth Vadar. The tinnitus...well, very annoying. My sister used to have to deal with truck/car traffic every danged night and found also that the ocean waves sound blocked it out better than a fan or white noise.

My Dad had a concentrator (one of those big ones) for 5 years and he used a long airhose so that he could keep the concentrator out of their (Mom & Dad's) room. They also had an overhead fan.
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