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: 265

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

jjimjam updated their profile
yesterday
Kath Hope replied to Becky Murkin's discussion noisy humidifier normal?
"It sounds like you're getting rainout issues (condensation) so here's an article to help with this. www.hope2sleep.co.uk/water-in-the-mask-hose-known-as-rainout"
Tuesday
Becky Murkin posted a discussion

noisy humidifier normal?

Hello,I have an air sense 10 auto.When I have the humidifier and the heated tube plugged in it makes a sort of drumming noise. Like that at the gallows in films.Is this normal? It wakes me up  and I have to give up and switch off  for the night.See More
Tuesday
John posted a discussion

Dentists in Hull that know about Mewing ?

I was wondering if there are any dentists in Hull who know about John & Mike Mew, and changing jaw shape over time?I could add that I saw an ENT consultant recently and she said jaw shape, malocclusion, is genetic, which has become a debatable…See More
Apr 9
Profile IconKaren Mcleod, Fiona Watson, Teresa Hobbs and 5 more joined Hope2SleepGuide
Apr 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning.  The machine sat on a tray because of…"
Mar 26
John posted a discussion

Nasal valve collapse

Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
Mar 24
John replied to John's discussion Airsense 10 -humidifier runs dry
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
Mar 24
Becky Murkin posted a discussion

F20 AirFit small marking bridge of nose

Please help or give advice all wise people on here.I have had the Resmed F20 AirFit small mask for over a month. Seals yet…See More
Mar 19
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"A very helpful reply Jonathan. I found the pressure setting for the full face mask to be too high when I changed to a nasal mask, but perhaps I should have persisted? I'll try again and I'll also discuss with the clinic whether an APAP…"
Mar 13
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Ramble alert!  My history is that I spent part of each week at a different location, so bought a second machine identical to my fixed pressure NHS machine and set it up to match using the clinician menu.  This was a very long time…"
Mar 12
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Thanks Jonathan - I had seen the YouTube video. My question is really about the experience of people who have control of their pressure settings, for example those people who have bought their machines directly and not obtained them through an NHS…"
Mar 12
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"This is NOT a recommendation http://www.youtube.com/watch?v=VNUWhd2UgQM"
Mar 11
Frances Knight posted a discussion

Air Sense 10 - changing pressure settings

I have been successfully using my air sense 10 since OSA diagnosis, and my AHI is now under 2. I had an appointment with my clinic this week and have been told there is no need for further appointments and just to contact them if I need supplies or…See More
Mar 11
Swen Greve is now a member of Hope2SleepGuide
Mar 4
Jonathan replied to Sue Reeves's discussion A few questions..
"If you have a helpful GP, I would ask them to re-refer you to the sleep clinic."
Mar 3
Sue Reeves posted a discussion

A few questions..

A quick bit of backgroundDiagnosed with OSA about 7/8 years ago by my local sleep clinic and given a F &P Icon CPAP.  After a couple of follow-up appts to sort out any issues, I was sent on my merry way. I have had no further face to face…See More
Mar 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I previously had a DeVilbiss Sleepcube and the dehumidifier did sometimes run dry.  On the other hand I now have an AirSense 10 and it never runs dry, and I've had the humidity turned up high."
Feb 26
John posted a discussion

Airsense 10 -humidifier runs dry

Hi. I'm finding the Airsense 10 the hospital gave me, the humidifier chamber runs dry. It's not even on max settings, which I'm guessing would empty it a lot quicker. Seems like a big design oversight to me. Does anyone else have this trouble? The…See More
Feb 26
David Hudson posted a discussion

Decline in hearing

HiI have regular, well yearly check ups at work. One being a hearing test. Since having my cpap machine my hearing has declined rapidly in 1 ear.....could this be as a result of pressure? I believe I'm on 15cm p max h2o. I just use a nasal…See More
Feb 26

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service