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 the warm welcome.

Started CPAP therapy early December having been diagnosed with severe Sleep Apnea. Over the past 10 weeks or so I have slowly adapted to using CPAP, really struggleing at times with mask fit, the having the flu which seemed to set me back somewhat. Things seem to be on the up again at the moment with a change of mask, and mask liners reducing mask leaks at last.

I am however finding my scalp tender where the mask head gear sits and wondered if anyone else had this problem and how they over came this. Or is it something that eventually goes away as you become accustomed to wearing the mask?

any help very much appreciated.

Frankie

Hi Frankie,

I have been a hosehead now for about 14 months and I too had severe sleep apnea. I too struggled with my mask and head sores but my persistence has paid off. My apneas are now down to 9 from 44. My mind and memory is much sharper and I hardly ever fall asleep during the day or early evening.

I have quite a big head and a chubby face. Also as I am predominantly a mouth breather so I was given a large full face simplex mask with neoprene straps. I struggled with comfort and leaks. However, after about 3 months my apneas went down below 15. I bought myself a medium full face simplex mask and this gave me greater comfort and less leaks.I went to my GP with head sores and she gave a steroid scalp treatment called betacap. This worked very well and cured my symptoms but not the cause. On my next visit to my sleep clinic, who have been amazing, I mentioned this and they gave me a fabric cap to clip onto my my mask. This is much more comfortable to wear and significantly reduced the pressure sores on my scalp. Also the straps are elasticated fabric and not neoprene, so I sweat much less and the velcro fasteners are more effective.

I am also on diet to lose a bit of weight although I would say I am only slightly overweight. This has helped with my apneas and has given me more energy.

I hope this helps you Frances. Stick at it and don't give up.I was told 12 to 18 months to get well again that is about right. 14 months in and I am nearly their and getting my health back.

Hi everyone! I'm new to this forum and new to Sleep Apnoea. I was diagnosed a few weeks ago having 50+ events per hour. I'm doing well with my Resmed machine and mask, however I wonder if anyone else suffers from an itchy scalp where the straps have been. It's not the worst thing in the world but it's really annoying and isn't likely to get any better. Wish I had thicker hair, maybe! 

Welcome Maxine and good you got diagnosed with such a severe case.  I wonder if the itchy scalp is due to the nights being hotter at the moment or if you've washed the straps with something that's causing an allergy.  If you place a piece of cotton material underneath the straps you would know if it's an allergy.  We do sell the softcaps at the charity, but they're not compatible with all the masks - depends which one you're using https://www.hope2sleep.co.uk/softcap-alternative-headgear.html

Maxine Chaplain said:

Hi everyone! I'm new to this forum and new to Sleep Apnoea. I was diagnosed a few weeks ago having 50+ events per hour. I'm doing well with my Resmed machine and mask, however I wonder if anyone else suffers from an itchy scalp where the straps have been. It's not the worst thing in the world but it's really annoying and isn't likely to get any better. Wish I had thicker hair, maybe! 

Thank you for the reply, Kath. I had thought about making myself a cotton cap but have been putting it off thinking that I just don't need something else on my head during the night! I will give it a go and let you know. 

You could try that Maxine, but just a piece of material under the straps would at least let you know if it's the straps themselves causing the issue.  The softcap I mentioned is for using without the mask's headgear.  Good luck!

Maxine Chaplain said:

Thank you for the reply, Kath. I had thought about making myself a cotton cap but have been putting it off thinking that I just don't need something else on my head during the night! I will give it a go and let you know. 

Hi All,

Thanks for allowing me to join it is very much appreciated.
I was diagnosed with sleep apnoea about 8 months ago and I received my ResMed machine about 6 weeks ago, so everything is still a bit new. I am also claustrophobic which has made things a little bit harder, but I feel I am making good progress. I have already bought the cleaning wipes and spray and have found several hints (such as the sock hint) that might make my life a bit easier. Thank you for that. I am looking forward to trawling through the various threads for more nuggets!

I did not know anything about sleep apnoea prior to being diagnosed. I now know more, but not enough! What I do now know is that since finding this site I am not in this alone and help is but a few keystrokes away. For that I am truly thankful.

I will no doubt be posting several questions in the coming weeks and months. Hopefully I don’t bore you all too much!!

Thanks

Hi Andrew, I got my CPAP, Christmas Eve 2012 and the first time I wore my mask, my claustrophobia kicked in big time, so you have my sympathy. I ended up on sleeping tablets and I’m still on them now . It’s been the only way I’ve got through it. The recommendation is that if you have sleep apnoea,you shouldn’t take them but my doctor said that I would rather have the tablets than not use the CPAP machine and here I am. There will be other solutions for you but I wanted you to know my story.

good luck.

mark



Andrew Mitchell said:

Hi All,

Thanks for allowing me to join it is very much appreciated.
I was diagnosed with sleep apnoea about 8 months ago and I received my ResMed machine about 6 weeks ago, so everything is still a bit new. I am also claustrophobic which has made things a little bit harder, but I feel I am making good progress. I have already bought the cleaning wipes and spray and have found several hints (such as the sock hint) that might make my life a bit easier. Thank you for that. I am looking forward to trawling through the various threads for more nuggets!

I did not know anything about sleep apnoea prior to being diagnosed. I now know more, but not enough! What I do now know is that since finding this site I am not in this alone and help is but a few keystrokes away. For that I am truly thankful.

I will no doubt be posting several questions in the coming weeks and months. Hopefully I don’t bore you all too much!!

Thanks

Hi

Thankfully I do not suffer from claustrophobia, but I did start off (over 10 years ago) with a big bulky mask.  I soon purchased my own mask which was much more minimal.  Currently I am using a Dreamwear https://www.hope2sleep.co.uk/dreamwear-nasal-cpap-mask.html which I hardly notice.  You might find a change of mask helps.

Good luck, stick with it.  CPAP has made such a huge difference to my life.

Jonathan.

Andrew Mitchell said:

I was diagnosed with sleep apnoea about 8 months ago and I received my ResMed machine about 6 weeks ago, so everything is still a bit new. I am also claustrophobic which has made things a little bit harder, but I feel I am making good progress.

A belated welcome Andrew and you're definitely not alone.  It won't be long before some of your friends and family get diagnosed due to how common sleep apnoea is, and it's you who'll be helping them :)  As Jonathan has pointed out, there are more minimalistic masks out there.  In fact I use the full face version of the DreamWear as I'm a mouth breather, but it's still far smaller than the larger masks I used to have to wear.

There's also a whole page on the charity's website dedicated to most of the challenges we face, as there's usually a tip or product for them all https://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-o...

Thanks for letting me join your group. I have been on CPAP/APAP since 2012 and have mild sleep apnea. I started with a Philips Resmed unit and now have a Dreamstation, all supplied via the NHS.

My results have always met the criteria laid down which says it is doing what it should be and for fear of losing my driving licence I have never admitted the truth.. I don't drive unless I'm fit and always share driving with my wife, and stop if I get tired, so please don't castigate me about that, but I have problems and I'm hoping to try to find answers here.

I have tried to learn what all the terminology means and all the abbreviations but for some reason it just hasn't sunk in. Maybe I feel resistant to it all. I'm usually really quite good at understanding medical matters, I have several major health issues and I learn about how the meds work and try to understand options and alternatives, but this Apnea thing just drives me nuts...!

My consultant has been less than helpful and I have va GP (I think) who is un-seeable and generally considered in the town to be the most unhelpful Dr in england.. But he's the only show in town so I'm stuck with him too..

A bit at wits end with it all and need some constructive help.

Sorry to be a bit down on the whole thing.

On the up side I have travelled a bit with my machine, to Australia, Hong Kong and around Europe and I have used it camping in a tent and in caravan & motorhome etc.

I learned the hard way not to descale my humidifier, or use anything to sweeten the flavour as almost everything attacks the seal on the heater plate.

I went through several different masks from nasal masks to full face with chin straps and the only thing I found works is a real full face - FitLife mask.

Thanks and Hello,

Bob

Hi Bob

Welcome to our group and glad you found us.  An apology is never needed for being a bit down on things, and without good support many people feel like this from time to time.  It's great to hear you haven't let your diagnosis prevent you from travelling.

For many years I too used the FitLife when struggling to find a suitable mask.  I still love my old faithful, although now find the DreamWear Full Face works really well for me, although masks are a very individual thing and what works for one person doesn't always work for another.

There is no judgement from me, as you sound very responsible in not going behind the wheel when you feel tired as there are too many accidents by people taking risks.

If you look on our charity's main website there's a link here to the terminology https://www.hope2sleep.co.uk/a-to-zzz-of-sleep-definitions-and-abbr...The main thing people are usually interested in is looking at their results on the machine to see that their AHI (apnoea hypopnoea index, meaning the amount of apnoeas or hypopnoeas per hour) is as low as possible - ideally under 5, and also that their leakage isn't high from the mask.  Let us know if there's anything else you're struggling to understand.


Bob Young said:

Thanks for letting me join your group. I have been on CPAP/APAP since 2012 and have mild sleep apnea. I started with a Philips Resmed unit and now have a Dreamstation, all supplied via the NHS.

My results have always met the criteria laid down which says it is doing what it should be and for fear of losing my driving licence I have never admitted the truth.. I don't drive unless I'm fit and always share driving with my wife, and stop if I get tired, so please don't castigate me about that, but I have problems and I'm hoping to try to find answers here.

I have tried to learn what all the terminology means and all the abbreviations but for some reason it just hasn't sunk in. Maybe I feel resistant to it all. I'm usually really quite good at understanding medical matters, I have several major health issues and I learn about how the meds work and try to understand options and alternatives, but this Apnea thing just drives me nuts...!

My consultant has been less than helpful and I have va GP (I think) who is un-seeable and generally considered in the town to be the most unhelpful Dr in england.. But he's the only show in town so I'm stuck with him too..

A bit at wits end with it all and need some constructive help.

Sorry to be a bit down on the whole thing.

On the up side I have travelled a bit with my machine, to Australia, Hong Kong and around Europe and I have used it camping in a tent and in caravan & motorhome etc.

I learned the hard way not to descale my humidifier, or use anything to sweeten the flavour as almost everything attacks the seal on the heater plate.

I went through several different masks from nasal masks to full face with chin straps and the only thing I found works is a real full face - FitLife mask.

Thanks and Hello,

Bob

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