Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Hello everyone, it is my first post here. 

I'm living in london.

I have been diagnosed with severe sleep apnoea and severe lack of oxygen.

I have started the therapy since December 2016.

I one big question related to the story below:

I have started my therapy using a variable pressure machine. After 2 weeks, my setting where found to be 11.2. So then they give me a CPAP machine with air humidifier. 

Until february, I was sleeping good/perfectly, sometimes waking up because of mask seal, but when I was waking up on the morning I was fully energised. Like jumping out of the bed, being happy and so on.

I was even sleeping sometime with 0 L/min pressure leak. (rare).

Since February my sleep has degraded, I still don't fall asleep during the day, my brain is functioning normally at work however but I don't feel fully energised like the first 3 months and my general mood has degraded as well. 

I have as well since Feb, raise the setting of the humidifier from 4 to 6, as before at 4, I was dribbling saliva in the mask (in my mouth), and since now I wake up on the morning with dry lips or dryness in my nose. I can't put the setting at 8 (maximum) because after the water start to condensate around the valve (clapet) before the mask and it start whistling, waking me up. 

The 2nd things I noticed, it is that the air flow seems less important as soon as I start the machine. Before it would flow in my mouth while breathing with my nose with the mouth open and now it barely flow on the lips. It is like the air is still pressurised but I get less air in. 

Unless my body got use to the air flow and now my airways do not open so easily. 

The 3rd thing, is from the myair screen, since I monitored the changes, I never reached again a 0 l/min the best I can do is 1 l/min when I m sure at 100% I don't leak during sleep.

However, my event per minutes are still around 0.X and 2 max. 

I don't what to do, I have already spoke about that to the nurse and she has given me a tube that heat the air to avoid condensation but the connection between the valve and the tube leak a lot of air and after a week using it I started falling asleep at my desk.

Should I request an oximetry, a swap of machine? or maybe ask for test again the variable pressure one?

or maybe this normal?

Thanks a lot for your help.

Views: 271

Reply to This

Replies to This Discussion

Sorry for the delay SleepGuy and sorry to hear the good initial benefits you felt seem to have slipped.  Sometimes this can happen, because the difference from living with severe sleep apnoea to getting good safe sleep seems such life-changing, but then people get used to this feeling so start to notice remaining symptoms.  It could be that there is another underlying problem, but it also could be that, even though your therapy is good, you're getting interrupted sleep through the humidification problems.  Also are you getting a good 7-9 hours sleep every night as that can make a big difference?

The issue with you thinking the air flow isn't as strong will be because you've got used to the pressure.  Many of us even pull the mask away from our faces to check the air is flowing and are surprised to hear it is, as we get so used to the pressure.

Your leakage is very good at 1 l/min.  Not many people get a zero.  You could try a mask liner to help with the leaks that disturb your sleep http://www.hope2sleep.co.uk/silent-night-mask-liners.html

Can I ask if you started to struggle when you were changed from variable pressures to fixed CPAP pressures?

I have started the cpap therapy in jan and the symptoms was back in march. I do sleep between 7 to 8 h every nights. So I got it for the body to get used to the air flow. However that's still a huge difference that I have from the first 3 months in term of energy and hungriness.

Anyway I m in touch with the hospital I will see what they can do.

Thanks 

Sleepy guy

Good luck with your appointment SleepyGuy.  There are occasions when some people are better an auto pressures, but bearing in mind your AHI is below 5 and you're getting a good 7-8 hours of sleep on CPAP, it may be worth you asking your GP for blood tests for diabetes, hypothyroidism, Vitamins B12 + D, as these are all linked with sleep apnoea.  Let us know how you get on.

SleepyGuy said:

I have started the cpap therapy in jan and the symptoms was back in march. I do sleep between 7 to 8 h every nights. So I got it for the body to get used to the air flow. However that's still a huge difference that I have from the first 3 months in term of energy and hungriness.

Anyway I m in touch with the hospital I will see what they can do.

Thanks 

Sleepy guy

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Nick Daniel replied to John's discussion Are every small CPAP machines any good?
"Yes, it does the job. I use a Powapacs Atom for portable power "
Wednesday
John replied to John's discussion Are every small CPAP machines any good?
"Hi Nick thanks. Does it do the job and could you camp with it?"
Dec 18
Nick Daniel posted a discussion

CPAP Total Face Mask

I was curious whether anyone has used the CPAP Total Face Masks and could pass on their observations? I've been using an Airfit F20 for years which is fine apart from the permanent red mark on the bridge of my nose, and have recently tried the…See More
Dec 17
Nick Daniel replied to John's discussion Are every small CPAP machines any good?
"I've been using the Resmed Airmini for about 5 years when travelling - overall lightweight and small and can be controlled by an App, but it does produce a loud whistling/wind sound for me which hasn't been reduced by an inline filter or…"
Dec 17
Greg Lloyd is now a member of Hope2SleepGuide
Dec 6
Jonathan replied to David Hudson's discussion Pressure waking me up. Belching and wind
"Hi It sounds like you need to have more conversations with your sleep clinic.  There's little point in having a high pressure if it means you cannot tolerate the machine.  There's an interesting video here…"
Dec 1
David Hudson posted a discussion

Pressure waking me up. Belching and wind

HiI'm using the prisma smart max machine. Initially I was just on a nasal mask, this changed as I was sleeping with my mouth open. I then went to face and nose mask and complained of bad wind and belching. Sometimes the pressure in the night was…See More
Nov 28
Jonathan replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service