Early CPAP UARS success!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
sleepyfox
Posts: 11
Joined: Fri Sep 25, 2015 1:59 pm

Early CPAP UARS success!

Post by sleepyfox » Fri Sep 25, 2015 2:48 pm

I got my CPAP 9 days ago, one year since being diagnosed with UARS (NHS is slow!) and probably many years, at least 5 since I started having the condition.

From the first night for the first time in years I woke up *not* feeling like I had been hit by a truck and under sedation, but with a normal body and an awake, clear mind! I actually kept thinking it was night time when I was waking up because I felt so awake! It's absolutely mind blowing, just to feel awake and alive!

I guess I should still be tentative, as I have read here that after an initial boost sometimes there is a step back as the body catches up on lost sleep. Having UARS rather than OSA means it's tricky knowing what applies and what doesn't though - it's a shame there is not more info out there. At the same time I feel so lucky and grateful that I was actually diagnosed with this and given CPAP, as I know it is often missed. It took a lot of convincing of doctors to eventually get a sleep study as I am not a typical OSA patient (female in 20s).

I feel even more lucky and grateful that I have a condition that can be treated - for the past three years, UARS combined with mental health problems and severe side effects from a 3-year implant (another recent discoveryI had once removed) and very difficult personal circumstances has lead to a life not worth living, mostly spent in bed alone, sometimes for months at a time, unable to work and so on. The combination of physical effects were so severe that I thought I had a severe chronic illness like CFS. I kept going to the doctor and they kept blaming it all on my mental health, which made me feel even more desperate. The isolation and desperation of knowing something was wrong but not knowing what made my mental health even worse.

I know it's not a magic bullet for everything in my life but I am just so relieved to feel like I have a normal body again! To actually have the energy to do things! I have felt 90 years old for the past couple years, at my worst having to rest after a ten minute walk. And my mind has been much clearer. Most of the time I have felt like I am in a dream, but now I am feeling awake (up until about 4pm, hoping that will extend as time goes on). I'm hoping it will have a knock-on effect that improves my mental health significantly - already today out of habit I was resting inbetween household chores, and then realising I didn't need to rest! I wasn't exhausted! And doing those chores just felt easy and natural, rather than requiring an hour of me trying to motivate myself into doing them and still struggling to get throught them.

I hope that CPAP continues to give me energy and that I might use that energy to finally build a worthwhile life for myself. I also have stopped being thirsty all the time and my coffee and food cravings have reduced a lot.

Using CPAP

It sounds like I had a pretty easy time adjusting to CPAP compared to many which I am also grateful for. Leaks were tricky and took a few days to get under control - the trick for me was to have the mask pretty loose but be very careful about how I position it. I was knocking the mask out of position when I was laying my head into the pillow. I didn't want to pay for a proper CPAP pillow, so I just got a small very firm pillow which supports my head but then the mask lies outside so it stays in position. I learnt to adjust the mask position instead of tightening the straps which didn't really help. I still get a few small leaks but it feels pretty manageable at the moment.

The first few days I had trouble sleeping through the night, with drool (sorry if TMI!) and with very dry eyes, but these have mostly seemed to have resolved themselves or at least improved greatly. I put on lip balm so my lips don't get too dry. I had trouble knowing what to do with my mouth/nose but have settled with having my mouth slightly open and breathing - unfortunately I am a mouth breather, nose is always kind of blocked and once I fall asleep I always end up mouth breathing anyway. Mouth is uncomfortable completely shut unfortunately.

My remaining issues are 1) Dry mouth - unfortunately this wakes me up a couple of times a night as it gets so dry. Will a humidifier help with this? I didn't get one but thought I might try asking in a week or two if it persists - don't know if they are easy to get or not. 2) Noise - I am sleeping with earplugs, even though I can still hear it with earplugs it is manageable. But I would prefer to not sleep with earplugs every night, so I'm trying to slowly wean myself off.

Sorry for length! Just excited to share And a big *thank you* to this board as I referred to it many many times whilst trying to work out the kinks with leaks and so on.

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SleepyCarey
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Location: North Carolina, USA

Re: Early CPAP UARS success!

Post by SleepyCarey » Fri Sep 25, 2015 3:16 pm

I am just so, so very happy for you. Sounds like you've had quite a tough road! I really hope your therapy keeps going so well! What a relief to feel human again, huh?!

Yay for you! Thank you for sharing your story.

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Comments? Is this where I put my thoughts on the Israeli-Palestinian conflict?
Go figure - I can walk while chewing gum but apparently I can't quite grasp breathing while sleeping.

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Julie
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Joined: Tue Feb 28, 2006 12:58 pm

Re: Early CPAP UARS success!

Post by Julie » Fri Sep 25, 2015 3:29 pm

Having a humidifier and not needing it even most of the time is a lot better than not having one and feeling the need of it even some of the time.

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lindalam89
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Joined: Wed Sep 23, 2015 2:12 pm

Re: Early CPAP UARS success!

Post by lindalam89 » Fri Sep 25, 2015 3:59 pm

Thats exciting news! I was diagnosed with mild OSA but i've been told I technically have UARS but for the sake of cpap eligibility I think my doctors went with mild OSA so I could qualify for cpap. I have been struggling for over a year now and want to give up... I am easily bothered by noise no matter how quiet.

Could you offer insights on maybe your cpap settings and how long it took to feel the difference? Did you have a things get worse before getting better period? I can empathize about the frustration with doctors. I've corrected my doctors many times that my frustration is with the fatigue and had nothing to do with depression.
ResMed AirSense 11
AutoSet For HerModel
PAP Mode: Auto for Her
Min 7.2 Max 12.6 (cmH2O)
humidifier: 8
Amara view face mask
99% mask fit

sleepyfox
Posts: 11
Joined: Fri Sep 25, 2015 1:59 pm

Re: Early CPAP UARS success!

Post by sleepyfox » Sat Sep 26, 2015 5:07 am

Sleepycarey - Thank you! It feels wonderful!

Julie - good point, good to have the option regardless. Also been having a bit if congestion it might help with.

Lindalam89 - hello nice to meet a fellow UARS patient, they seem rare! Sorry you are having such a tough time of it though. I use straight CPAP pressure of 10, and I believe the cflex setting is on 3 (which I think makes it easier to breathe out). I have a Philips remstar system one cflex plus I think. I don't know if my doctor is very good or just lucky because its the first pressure I've tried but it seems to be working straight away.

First nights were hard even with ear plugs, because of the strange noises I thought there was techno music playing! But I decided to breathe along 'in time' and that slowed my breathing a lot which helped me sleep. My worst nights have been when I've felt anxious. Good luck with your treatment.

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lindalam89
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Re: Early CPAP UARS success!

Post by lindalam89 » Sun Sep 27, 2015 3:49 pm

Inteesting you have very similar settings to the new settings I put into my apap. I was struggling for a year on APAP mode. Switched to cpap and things got worse. I almost gave up but everyone here was so supportive and suggested a higher fixed pressure. That helped with the AHI but I feel much more tired than before. How long did it take till you felt the newfound energy? Still cant get used to cpap noise with earplugs... my breathing sound is terrible. My partner says to pretend you are listening to congested breathing but I dont think I ever sounded like that when congested.

Are you using a full face mask? Or nasal? Do you tape?
ResMed AirSense 11
AutoSet For HerModel
PAP Mode: Auto for Her
Min 7.2 Max 12.6 (cmH2O)
humidifier: 8
Amara view face mask
99% mask fit

sleepyfox
Posts: 11
Joined: Fri Sep 25, 2015 1:59 pm

Re: Early CPAP UARS success!

Post by sleepyfox » Tue Sep 29, 2015 2:37 pm

Had more energy from the first night, but everyone's different. I use a full face mask, do not tape or use a chin strap.

Have you tried sleep phones to drown out the noise? They are headphones in a soft head band. Mine broke recently but I used to use them all the times to help fall asleep, listen to history podcasts.

PEF

Re: Early CPAP UARS success!

Post by PEF » Tue Sep 29, 2015 9:14 pm

Hi - I also just realized I have UARS.

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PEF
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Re: Early CPAP UARS success!

Post by PEF » Tue Sep 29, 2015 9:54 pm

Hi - PEF again. Do you happen to have a recessed jawline? I ask because I do and my doctor thinks this is the reason for my UARS. I just got my CPAP machine - the Resmed S9 Autoset, but the mask I ordered won't work because of massive leaks because of my recessed jaw. So I am thinking about a pillow mask. I hope I have as good a result as you did great news!!! I wish there were more people like us. Have you heard of Dr. Steven Park and the book "Sleep Interrupted"?

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Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: I also use the Airfit P10 nasal pillow mask

sleepyfox
Posts: 11
Joined: Fri Sep 25, 2015 1:59 pm

Re: Early CPAP UARS success!

Post by sleepyfox » Wed Oct 07, 2015 2:07 pm

Hi PEF - yes I also have a recessed jawline - my docs didn't explain to me outright that they think this is why, but it's mentioned a lot on the paperwork so I'm assuming they think it is a factor.

It's funny I was convinced my jaw was too backset for my mask for the first week or so, as there always seemed to be a small gap whatever way I tried to put it on. I even bought blister plasters to try and bridge the gap. However eventually I realised its all about having my mask quite loose so that the pillow of air creates a seal. Now I can actually move my jaw wide open and inbetween without breaking the seal - whereas before I had a lot of leaks around my mouth. However I am a mouth breather with frequent nasal congestion so I have to use a full face mask anyway - it might be easier for you to just skip to pillows.

I hope things go well for you! I haven't heard of Steven Park - does he have any nuggest of wisdom/advice?

sleepyfox
Posts: 11
Joined: Fri Sep 25, 2015 1:59 pm

Re: Early CPAP UARS success!

Post by sleepyfox » Wed Oct 07, 2015 2:23 pm

In case anyone is curious here is an update.

Three weeks into CPAP. Had a bit of a slow down, as in became a bit more tired in the mornings for a few days - I think because of some nasal congestion (caused by CPAP?). I'm hoping it's just temporary/my body catching up on sleep debt. I'm still miles better than pre-CPAP tiredness. I only got about five hours sleep last night, so I'm a little tired but basically fine. Before CPAP five hours sleep would make me phyically ill - sniffles, sneezing, headaches, intense dehydration and cravings for sugar, and absolutely exhausted to the point of really struggling to last a whole day. Today I forgot I even had five hours!

Another very exciting development is that I feel my brain is starting to 'wake up' - I'm starting to think much more clearly and be interested in learning again. I'm having ideas. I feel like I've spent the last few years in a depressed hazy fog from which I might finally be emmerging. I am feeling much more positive in general day-to-day, feeling more able to handle things and to try new things. I am starting to feel optimistic about the future.

Part of me wanted to panic and be upset when I got a cold at the weekend, given my past endless flu/colds. But I was able to remain pretty calm and positive about it and, completely amazingly I got over the cold in three days!!!!! Normally anything like that would knock me out cold for a week at least. Feeling hopeful my immune system will strengthen on CPAP.

Only niggles still having is really gassy - I've read this often goes away - I hope so! Very unpleasant. Haven't weaned myself off earplugs yet....might have to go cold turkey if I want to. Dry mouth is still an issue but I have had times where I am sleep straight through the night. I threaded my hose through the slats in my headboard, which means it's not getting in the way when I toss and turn.