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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I've learnt a lot in a short space of time through Hope2Sleep. Look forward to joining discussions on the forum.

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...

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Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"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…"
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Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
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mark peters replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
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Andrew Mitchell replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
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Sleep2snore replied to Eric Swindon's discussion Repeated air blowing out of mouth
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Sleep2snore replied to Edam's discussion Double inhaling
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Sleep2snore replied to Edam's discussion Double inhaling
"EDAM SAID:  "I have had problems with my Resmed S9 APAP staying at 20 cm for 2-3 hours at a time which wrecks me the next day." This is not the first time I have seen someone reporting a ResMed S9/S10 going to 20 and staying there! I…"
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Edam replied to Edam's discussion Double inhaling
"You are pretty close to say its a asthma attack"
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Edam replied to Edam's discussion Double inhaling
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Annette Pentney posted discussions
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Eric Swindon replied to Eric Swindon's discussion Repeated air blowing out of mouth
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