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

Views: 12990

Reply to This

Replies to This Discussion

Hi Deborah,  since our last phone call, i would like to thank you for all the help you have given kev and my self in regards to the masks. he has tried the large and finds it more comfortable to wear. the room seems so quiet now that i keep checking on kev to make sure his machine is ok. we do get a bit of water in the bottom of the humidifier which i hope is normal.

we really can not thank you and your company enough.

much love from 2 very happy people

mel and kev x

You are most welcome, Mel!  Yes, the Simplus has a new diffuser in it ... mainly for the benefit of the partner :)  Is Kev finding any trouble with mask leak or anything like that?

Hi Deborah, no where near as much leaking as his other masks that he has tried. i would recommend this mask to other sleep apnea sufferers. for patients and partners. it is a very well made mask. x

Hi all

I'm a newly diagnosed OSA sufferer and, as of last Friday, a fellow hosehead(!).

It's all a bit new at the moment, though I seem to be coping with the CPAP machine and mask ok at the moment. I've even managed to maintain most of my beard, which has been with me for the past 15 years or so and which I was really loathe to lose. It was long overdue a good trim anyway! Today, for the first day in goodness knows how long, I've got through the day without feeling particularly tired - if I didn't understand the science I would say it's a miracle!

Looking forward to chatting and finding out more about this, frankly, rather odd world! 

Iwan

Pleased to hear you've managed to keep your beloved beard Iwan and even more pleased to hear you're already feeling the benefits of CPAP therapy!

Whilst many sleep apnoea sufferers at present feel rather isolated in their condition, they won't soon as more and more people get diagnosed.  Our condition is actually as common as asthma and diabetes, but at the moment only a very small proportion are diagnosed, and I'd go as far to say that we're the lucky ones



Iwan Davies said:

Hi all

I'm a newly diagnosed OSA sufferer and, as of last Friday, a fellow hosehead(!).

It's all a bit new at the moment, though I seem to be coping with the CPAP machine and mask ok at the moment. I've even managed to maintain most of my beard, which has been with me for the past 15 years or so and which I was really loathe to lose. It was long overdue a good trim anyway! Today, for the first day in goodness knows how long, I've got through the day without feeling particularly tired - if I didn't understand the science I would say it's a miracle!

Looking forward to chatting and finding out more about this, frankly, rather odd world! 

Iwan

Welcome Iwan, it becomes second nature to us, I look at it as an extra arm or leg and most of us will tell you that we can no longer sleep without it. It has saved my life. A lot of people get that sudden burst of energy, what sometimes happens is it tapers off for a while and after 3 - 6 months you start to feel like that everyday as your body starts to heal. Remember for most of us we have had this illness a long time. I'm sure if you read up on it a bit more from either posts on here or websites, the more you will learn and understand our illness and how interesting sleep can be  

Hi Terry , Kath and "the rest of the team" . .............me and the new machine , are going great guns . sorry I don't reply to much stuff on here lately . ive always got something on . so don't think im ignoring you or anything !!      kath <3

Good to hear your doing well Kath.

Great to hear Kathryn.  Onwards and upwards...

Kathryn Chapman, said:

Hi Terry , Kath and "the rest of the team" . .............me and the new machine , are going great guns . sorry I don't reply to much stuff on here lately . ive always got something on . so don't think im ignoring you or anything !!      kath <3

Hî there, I am new to this site and joined as I was looking for information about apnoea. I have been using a cpap for a year with some success. Went to see my consultant yesterday and asked to try the wisp and wore it for the first time last night and I have to say it s the best yet. It was very light and comfortable and I didn't try to rip it off in my sleep.

That's good to hear Terry, and I've actually been trialling the Wisp lately - no easy task for someone like me who is still a mouth breather and usually needs a full face mask.  I have to say that I was very impressed and feel that Respironics have had a great breakthrough with this mask and I especially think it will be great for people who are prone to nasal bridge problems.  I imagine the reason you didn't feel like ripping it off is because it's so small, light and feels so soft. It also seals well and I tried my best (for the trial) to cause a leak, which proved very difficult!  Just wish I could train myself not to open my mouth in my sleep, as I'm not a lover of chin straps!  Hope this mask continues to give you full success!

Terry Foxon said:

Hî there, I am new to this site and joined as I was looking for information about apnoea. I have been using a cpap for a year with some success. Went to see my consultant yesterday and asked to try the wisp and wore it for the first time last night and I have to say it s the best yet. It was very light and comfortable and I didn't try to rip it off in my sleep.

hi and welcome Terry

i too am now using the Wisp, as Kath has said i think Philips Respironics have he ally made a breakthrough with this one.

i thought the True blue was best until I tried the Wisp. My only comment to them would have been please can they make a Small, rather than Small/Medium size together as I think I am somewhere in between S/M & P, so I'm alternating them, The petite with the S/M but I'm finding air leaks into my eye on the S/M.

I guess most of their customers may be using the larger of the masks, even on the True Blue Mr Oko never kept a stock of the Petitle replacements. It wasn't a huge issue as he just calls Philips and tells them to send them out and the arrive next day.

I'm assuming from where you are from we possible see the same consultant :)

Ive been using CPAP now for about 18 mtgs and could have managed with out his or Kath's help. I wasn't an 'easy starter' lol

glad to hear that you are coping well  xx

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

Jonathan replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19
John replied to John's discussion evil mask noise
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
Oct 17
Jonathan posted a discussion

ResMed AirSense 10 getting noisy

HelloI have an NHS issued ResMed AirSense 10 with heated humidifier.  In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
Oct 16
Jonathan replied to John's discussion evil mask noise
"Hi My first question is why is condensation forming?  I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away.  I use a nasal mask, with the humidifier…"
Oct 16
John replied to John's discussion What's a good Apnea forum?
"11K+? Ok that's probably where I should look then :-)"
Oct 16
Kath Hope replied to John's discussion What's a good Apnea forum?
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
Oct 16
John posted discussions
Oct 16
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"There's some information here, but generally it's very common and likely due to our anatomy."
Oct 12

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service