Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Welcome to our Forum - Feel Free to Introduce Yourself Here.

Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers. 

Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation.  Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.

 

Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...

 

Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum.  Don’t be shy in posting and sharing, as we’re all in this together and to help each other.

Best Wishes for good sleep!

Kath

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Thanks Kath. I am going to start adapting to the mask by wearing it in the day at first. Once I get one or two nights on it I reckon I will be OK.

other forums have said there is no point in tweaking my pressure because of the high leak rate and I need to change my mask (which I do, as the Comfort Gel is of course discontinued). 

Kath Hope said:

Hi Crabbleite

I can't speak for the Resmed Mirage FX, but we've sold the Wisp for years at the charity and our site has all 5 star reviews.  The DreamWisp is the newest version with the difference being the hose comes out of the top of the mask and to be honest I prefer masks with the hose at the top like the DreamWear range (I use the DreamWear full face as I'm a mouth breather).

Well done on tapering off the Clonazepam if it wasn't helping you.

Regarding your higher AHI, there can be lots of reasons for this, but it's also worth considering if you definitely ONLY breathe through your nose during sleep as that could cause a higher AHI.  Also though the fact you say you may need ASV could also be part of the reason.

Crabbleite said:

Hi

I have been using xPAP fo around 15 years and have never really for it to work for me. I am joining this forum with eh aim of getting my AHI below 5.

I have been using a Respirinicas Comfort Gel nasal mask for a long time now and it is well overdue to switch to another mask.

So my first task is to do that and the two main candidates are either the wisp or the ResMed Mirage FX.

Other than that I have been told elsewhere that I probably need an ASV machine but at the moment I'm using BiPAP.

Co-morbidity makes my case extra complex and hard to treat. I have also been diagnosed with Periodic Limb Movement Disorder, and in the closing year (hopefully) of a five-year long taper from Clonazepam, a med that was prescribed to treat my PLMD, with disastrous results.

As I say, as far as CPAP goes if I can get my AHI below 5 (and preferably as close to 0 as possible) then that will be as much as CPAP can do for me.

 

Sorry posted in wrong place

Hi Everyone,

I’m 50 and was diagnosed last month with moderate sleep apnea with a score of 28. Last night was my first night with my cpap machine and mask. I slept a whole 8 hours without waking! I also feel quite a bit brighter and less foggy this morning.
There were a few minor issues with it. I have the resmed auto machine from the sleep clinic and it is automatic but the air flow is set between 4 and 15. When I put the mask on initially and did the mask test I had a good fit.
When I switched on the machine and started for my first night it made me feel a bit panicked as if there was not enough air for me to breath. I persevered and noticed that within the first 45 minutes the level was up to 9.6 which seemed more comfortable and then I fell asleep. I was wondering is this feeling quite normal or is it just because the cpap is new for me?

The other issue is that this morning when I took the mask off there seems to be several red patches/spots on my nose where the mask touched, does this mean I fitted it wrong?

Any suggestions on this would be great

Thank you 

Sara

Either they have not set your minimum pressure and the machine is slowly finding the level you require, or they have not set up a minimum pressure.

I don't know how or if they set your machine up, but my mate got one and under Covid rules they were not allowed to set it up, it had to be left as it came out the factory.  He was told it would take a while to build up pressure, but it would get there.

However, he like you panicked.  I had to tell him how to set it up after that he said it was far better than the old machine he had.

Either that or the RAMP is turned on, this delays the machine reaching its minimum pressure.

This can be turned off in the settings, that was the machine will only take 30 seconds to reach it minimum pressure, provided it is set.



Booksy said:

Hi Everyone,

I’m 50 and was diagnosed last month with moderate sleep apnea with a score of 28. Last night was my first night with my cpap machine and mask. I slept a whole 8 hours without waking! I also feel quite a bit brighter and less foggy this morning.
There were a few minor issues with it. I have the resmed auto machine from the sleep clinic and it is automatic but the air flow is set between 4 and 15. When I put the mask on initially and did the mask test I had a good fit.
When I switched on the machine and started for my first night it made me feel a bit panicked as if there was not enough air for me to breath. I persevered and noticed that within the first 45 minutes the level was up to 9.6 which seemed more comfortable and then I fell asleep. I was wondering is this feeling quite normal or is it just because the cpap is new for me?

The other issue is that this morning when I took the mask off there seems to be several red patches/spots on my nose where the mask touched, does this mean I fitted it wrong?

Any suggestions on this would be great

Thank you 

Sara

If you have an automatic machine it is called an APAP not a CPAP, it is all new!

Please quote the make and model of you machine, this helps us when we reply.

Hi Booksy

This is a great 1st night's result regarding already feeling the benefits of CPAP.   It's absolutely normal to get a few teething problems at first but if you feel the air pressure is still too low contact your sleep clinic who will be already monitoring how you get on and if they feel the settings need changing they can usually do this remotely or will instruct you over the telephone.  

It's unlikely you fitted the mask wrong, but your skin isn't used to wearing the mask yet.  If the skin problems persist or get worse there are things like mask liners or cream that's safe to use.  In fact if you have a look at our charity's website you'll see there's a whole page covering the little hiccups we can come across - most of which there's a solution for https://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-o...

Hope Night 2 goes well :)
Booksy said:

Hi Everyone,

I’m 50 and was diagnosed last month with moderate sleep apnea with a score of 28. Last night was my first night with my cpap machine and mask. I slept a whole 8 hours without waking! I also feel quite a bit brighter and less foggy this morning.
There were a few minor issues with it. I have the resmed auto machine from the sleep clinic and it is automatic but the air flow is set between 4 and 15. When I put the mask on initially and did the mask test I had a good fit.
When I switched on the machine and started for my first night it made me feel a bit panicked as if there was not enough air for me to breath. I persevered and noticed that within the first 45 minutes the level was up to 9.6 which seemed more comfortable and then I fell asleep. I was wondering is this feeling quite normal or is it just because the cpap is new for me?

The other issue is that this morning when I took the mask off there seems to be several red patches/spots on my nose where the mask touched, does this mean I fitted it wrong?

Any suggestions on this would be great

Thank you 

Sara

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Mar 31
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Booksy This is a great 1st night's result regarding already feeling the benefits of CPAP.   It's absolutely normal to get a few teething problems at first but if you feel the air pressure is still too low contact your sleep…"
Mar 23
Sleep2snore replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
Mar 23
Sleep2snore replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Either they have not set your minimum pressure and the machine is slowly finding the level you require, or they have not set up a minimum pressure. I don't know how or if they set your machine up, but my mate got one and under Covid rules they…"
Mar 23
Booksy replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Everyone, I’m 50 and was diagnosed last month with moderate sleep apnea with a score of 28. Last night was my first night with my cpap machine and mask. I slept a whole 8 hours without waking! I also feel quite a bit brighter and less foggy…"
Mar 23
Mr Matt Boadle is now a member of Hope2SleepGuide
Mar 21
Judith Wilson replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Glad to hear you are settling into APAP machine Damien...it did sound preferable to CPAP ones.The more I use my oximeter as I wake up during sleep I think I’m discovering my problem with low oxygen seems to be only in the morning as I snooze,…"
Mar 13
Damien replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Hi Judith, sorry to hear you are struggling. I’ve been using my apap since Tuesday and noticed some small improvements but i think i’ll need to up the pressure to get AHI lower as although its much lower than my test result i’m…"
Mar 13
Judith Wilson replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Thank you Kath, yes I suspected Lung/Sleep folks had been commandeered’ to covid, but this seems to include appointment staff too! Although I’d love a remedy ( no matter how partial) to my existing conditions I am a bit fearful of the…"
Mar 10
Kath Hope replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Hi Judith Sorry to hear there's such a long waiting list in your area.  It's been made worse because a lot of staff from the sleep clinics are respiratory specialists and these are the very professionals who were needed in ICU and on…"
Mar 10
Kath Hope replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Sorry I missed this question Damien but I've spoken to you since at the charity and know you should have the machine by now.  Hope things are going well."
Mar 10
Judith Wilson replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"I am rather like Damien. Got a referral to Lung/Sleep consultant but no appointments in nhs for at least 10 months. Ordered the charities two night monitoring kit to test for sleep apnoea, but will this count as diagnosis to get prescription if I…"
Mar 10
Judith Wilson is now a member of Hope2SleepGuide
Mar 10
Damien replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Hi Kathy, i bit the bullet the other day and just ordered the apap. What is the usual waiting time for order and delivery completion in mainland UK? thanks  damien "
Mar 4
Kath Hope replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Bless you and do understand, now you've got a diagnosis with 'hope' in sight for an end, or at least vast improvements, to your symptoms.  We got some more machines ordered today, although only one APAP without a humifidier...the…"
Mar 2
Damien replied to Damien's discussion Newly diagnosed via Phillips at home test and needing advice
"Hi Kath, I’m just holding off to see final sight of my insurance docs and to speak to them (on the very unlikely chance they can do anything) but it does look like it will be excluded so will likely buy the apap this week and then see ENT…"
Mar 2

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