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: 12586

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 Iain Noble's discussion Resmed Airfit F20 Woes
"Hi.  No first hand experience, but you can see reviews here, which are mixed: https://www.cpap.com/productpage/resmed-airfit-f40-full-face-cpap-mask I notice cpap.com still appear to be selling the Quattro FX.  I have imported stuff from…"
6 hours ago
Iain Noble posted a discussion

Resmed Airfit F20 Woes

Dear FolksI have been using the Resmed Quattro FX mask ever since I was diagnosed over 7 years ago.…See More
yesterday
Iain Noble replied to Becky Murkin's discussion F20 AirFit small marking bridge of nose
"Hi All I can say is I feel your pain! I got the F20 as a replacement this year and it is very uncomfortable. I have just ordered the new Resmed F40 which is very small and light and so far it has been a lot easier to use for a mouth breather that…"
yesterday
Sarah Martin is now a member of Hope2SleepGuide
yesterday
jjimjam updated their profile
Apr 17
Kath Hope replied to Becky Murkin's discussion noisy humidifier normal?
"It sounds like you're getting rainout issues (condensation) so here's an article to help with this. www.hope2sleep.co.uk/water-in-the-mask-hose-known-as-rainout"
Apr 16
Becky Murkin posted a discussion

noisy humidifier normal?

Hello,I have an air sense 10 auto.When I have the humidifier and the heated tube plugged in it makes a sort of drumming noise. Like that at the gallows in films.Is this normal? It wakes me up  and I have to give up and switch off  for the night.See More
Apr 16
John posted a discussion

Dentists in Hull that know about Mewing ?

I was wondering if there are any dentists in Hull who know about John & Mike Mew, and changing jaw shape over time?I could add that I saw an ENT consultant recently and she said jaw shape, malocclusion, is genetic, which has become a debatable…See More
Apr 9
Profile IconKaren Mcleod, Fiona Watson, Teresa Hobbs and 5 more joined Hope2SleepGuide
Apr 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning.  The machine sat on a tray because of…"
Mar 26
John posted a discussion

Nasal valve collapse

Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
Mar 24
John replied to John's discussion Airsense 10 -humidifier runs dry
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
Mar 24
Becky Murkin posted a discussion

F20 AirFit small marking bridge of nose

Please help or give advice all wise people on here.I have had the Resmed F20 AirFit small mask for over a month. Seals yet…See More
Mar 19
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"A very helpful reply Jonathan. I found the pressure setting for the full face mask to be too high when I changed to a nasal mask, but perhaps I should have persisted? I'll try again and I'll also discuss with the clinic whether an APAP…"
Mar 13
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Ramble alert!  My history is that I spent part of each week at a different location, so bought a second machine identical to my fixed pressure NHS machine and set it up to match using the clinician menu.  This was a very long time…"
Mar 12
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Thanks Jonathan - I had seen the YouTube video. My question is really about the experience of people who have control of their pressure settings, for example those people who have bought their machines directly and not obtained them through an NHS…"
Mar 12
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"This is NOT a recommendation http://www.youtube.com/watch?v=VNUWhd2UgQM"
Mar 11
Frances Knight posted a discussion

Air Sense 10 - changing pressure settings

I have been successfully using my air sense 10 since OSA diagnosis, and my AHI is now under 2. I had an appointment with my clinic this week and have been told there is no need for further appointments and just to contact them if I need supplies or…See More
Mar 11
Swen Greve is now a member of Hope2SleepGuide
Mar 4
Jonathan replied to Sue Reeves's discussion A few questions..
"If you have a helpful GP, I would ask them to re-refer you to the sleep clinic."
Mar 3

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service