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 for that Kath. It does sound very appealing. I'm having a lot of problems with leaks I think on that fit life or full life, whichever one I imported late last year. My machine tells me I had a bad mask for everyday and I'm feeling the tiredness too. This is with a fabric liner between my face and the mask too!

I fancied giving that silicone divers mask sealant a go, someone mentioned it briefly on this thread in the last week or so, even that there was a product of that ilk that was designed for those like me with facial hair. I'm having terrible trouble trying to find it online you know. It's like a hidden thing that nowhere stocks!

Could anyone point me in the right direction? It'll be worth a try while I get the m
(Did it again, ARRRGH!!)

Money together for a wisp!

LOL - are you messaging from your phone?  The first 2 nights I trialled the Wisp I tried my best to make it leak, and it proved very difficult, which is always a good sign.  It's also good that it's a cheaper masks (as mask prices go).  It was the Full Life that you got, if I remember correctly, and Respironics decided not to bring this one over - probably due to the fact that it didn't go down too well in the States.  This is one of the few good aspects to us not getting the masks in the UK as we get to hear of any problems from the US first. 

Hi Steve - I dont know about the sealant but I was having real problems with leaks on a full face mask and the nurse at my sleep clinic recommended the thin strips of towelling with adhesive backing that are produced for racquet handles (no, honestly!). I cut a 2 inch strip and stick it on the bridge of the mask and it has stops leaks completely. The towelling comes on a roll, from any sports shop and you just peel it off in the morning and throw it away. The adhesive doesnt damage the silicone and its comfortable against your skin - might help with the face fuzz problem! For about £5 for a small roll, worth a go. the nurse told me that their clinic recommends it to anyone who has leaks on he full face masks, and no problems reported. Good luck! Diane

That's interesting Diane. Do you not get marks from the towelling? I once tried a new soft flannel material and woke up with the imprints on my face which took quite a long time to go

Hi Kath. I've been using quite a dark blue towelling strip and I havent had a problem at all. Regards Diane


Oh my god that sounds like a lifesaver Diane! I'm off out to get some tomorrow, almost looking forward to bed time tomorrow night now. I shall report back on Sunday!
Diane Finlayson said:

Hi Steve - I dont know about the sealant but I was having real problems with leaks on a full face mask and the nurse at my sleep clinic recommended the thin strips of towelling with adhesive backing that are produced for racquet handles (no, honestly!). I cut a 2 inch strip and stick it on the bridge of the mask and it has stops leaks completely. The towelling comes on a roll, from any sports shop and you just peel it off in the morning and throw it away. The adhesive doesnt damage the silicone and its comfortable against your skin - might help with the face fuzz problem! For about £5 for a small roll, worth a go. the nurse told me that their clinic recommends it to anyone who has leaks on he full face masks, and no problems reported. Good luck! Diane

That's really good to hear Diane and a great tip for me to share with others

Diane Finlayson said:

Hi Kath. I've been using quite a dark blue towelling strip and I havent had a problem at all. Regards Diane

Hi all

new member and newbie totally to Apnoea, so a bit of my story.

Diagnosed with SA officially in mid July after months/years of dropping off [needing to] during the day, although like others I thought I was getting a good nights sleep [but as a decibel shattering snorer not so much fun for my partner] the test showed that I was having SA episodes in advance of 60 per hour and so on August 4th I got my machine and mask. I fully expected to have issues on at least the first night but instead went right through for over 8 hours silent [My partner loves this ] and undisturbed sleep. That has more or less been the pattern in the fortnight following, with just two where I have taken the mask off and gone back to sleep "bareback" but both beating 4-5 hours, so all in all I think I have been amazingly lucky so far. I cannot remember any dreams [a major issue prior] and the weirdest part being that prior to the CPAP I would be up 1 or 2 times a night for bathroom breaks, but since having my mask...no visits, cannot fathom that one at all, but happy to take those side effects

I do not appear to have any mask related issues except, and wonder if any advice is out there, the side straps for my halter [as Amanda insists on calling it] do tend to rub where the ears join the face and can get a bit sore.

So, just about to mooch around here and see what's what and thanks for having me.

cheers

Steve

Good to read your story Steve and great that you've taken to CPAP so well with no major problems

Regarding the nightly bathroom trips, there's a few reasons for this - one is that bad apnoeas can arouse people from sleep and they 'think' they've woken up because they need the urinate, whereas if the apnoea hadn't woken them they'd probably have lasted a lot longer.  Another reasons is that as the oxygen levels go down and the pulse and blood flow goes up this puts pressure on the kidneys and causes the bladder to fill more often.

As for the lack of dreams, that's because you're now sleeping safely in REM sleep where a lot of our dreaming takes place.  We all dream, but unless we have our sleep disturbed around the point of dreaming we don't remember them.  A sign of not remembering your dreams is a good indicator of your good treatment

The one issue you're having can easily be fixed with the strap covers.  You can see them on the main website http://www.hope2sleep.co.uk/products/5 and there are also double fleece strap covers (a bit more expensive) if the marks are deep ones.

great minds and all that eh Kath thanks for the support.



Kath Hope said:

Good to read your story Steve and great that you've taken to CPAP so well with no major problems

Regarding the nightly bathroom trips, there's a few reasons for this - one is that bad apnoeas can arouse people from sleep and they 'think' they've woken up because they need the urinate, whereas if the apnoea hadn't woken them they'd probably have lasted a lot longer.  Another reasons is that as the oxygen levels go down and the pulse and blood flow goes up this puts pressure on the kidneys and causes the bladder to fill more often.

As for the lack of dreams, that's because you're now sleeping safely in REM sleep where a lot of our dreaming takes place.  We all dream, but unless we have our sleep disturbed around the point of dreaming we don't remember them.  A sign of not remembering your dreams is a good indicator of your good treatment

The one issue you're having can easily be fixed with the strap covers.  You can see them on the main website http://www.hope2sleep.co.uk/products/5 and there are also double fleece strap covers (a bit more expensive) if the marks are deep ones.

Hi Steve,

I appreciate it's not a competition :-) but my sleep apnoea was up at 86 events/hour when I was diagnosed.  Like you, I found it very easy to get used to a good night's sleep with my CPAP.

Pre-treatment I used to have several urgent dashes to the bathroom each night.  My GP suspected a prostate problem, but rationalised that I was fine during the day, and left well alone.  My sleep apnoea consultant said this was a not uncommon consequence of OSA.  When you're deprived of oxygen, your body releases a shot of adrenaline to wake you up.  Given enough adrenaline you're in flight-or-fight mode, and that can trigger a full bladder.  The consultant said he'd come across male patients who had been misdiagnosed, and had prostate surgery, before arriving at the sleep apnoea clinic!

Jonathan.

Steve Cooper said:

Hi all

new member and newbie totally to Apnoea, so a bit of my story.

Diagnosed with SA officially in mid July after months/years of dropping off [needing to] during the day, although like others I thought I was getting a good nights sleep [but as a decibel shattering snorer not so much fun for my partner] the test showed that I was having SA episodes in advance of 60 per hour and so on August 4th I got my machine and mask. I fully expected to have issues on at least the first night but instead went right through for over 8 hours silent [My partner loves this ] and undisturbed sleep. That has more or less been the pattern in the fortnight following, with just two where I have taken the mask off and gone back to sleep "bareback" but both beating 4-5 hours, so all in all I think I have been amazingly lucky so far. I cannot remember any dreams [a major issue prior] and the weirdest part being that prior to the CPAP I would be up 1 or 2 times a night for bathroom breaks, but since having my mask...no visits, cannot fathom that one at all, but happy to take those side effects

I do not appear to have any mask related issues except, and wonder if any advice is out there, the side straps for my halter [as Amanda insists on calling it] do tend to rub where the ears join the face and can get a bit sore.

So, just about to mooch around here and see what's what and thanks for having me.

cheers

Steve

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