"Ha, that's typical John, as your GP would have been able to give you a good examination.
Regarding the conflicting advice you've been given regarding jaw surgery, that's very difficult. We've come across several people who have…"
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Kath Hope
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Kath Hope's Discussions
Hope2Sleep Charity Helps with India's COVID-19 Crisis
Sorry the forum hasn't been as active as normal as all of us at the Hope2Sleep Charity have hardly had chance to breathe (except in sleep with our masks on thankfully) as we've been so busy. We've…Continue
Tags: Ventilators, Oxygen-Concentrators, COVID-19, India
Started May 25
Help for NHS Research when New to CPAP
We've been asked to help a team of researchers from the NHS (including Professor Joerg Steier from Guy's & St Thomas' who is our charity's medical advisor) if we will help them develop a package…Continue
Started May 25
Philips Respironics New Sleep Apnoea Diagnostic Service
If you snore and are tired, you could be suffering from sleep apnoea (see signs + symptoms on our website)…Continue
Started Apr 8, 2018
RAFFLE for out UK Supporters - ends Saturday 21st October 2017
We're extending our raffle to our United Kingdom Supporters *(sorry rules mean we can't share this out of…Continue
Started Oct 19, 2017
Kath Hope's Page
Latest Activity
"Hi Sally
You're right that we do have to keep a good cleaning regime with our CPAP and daily mask cleaning will help prevent leakage, as a lot of this is caused due to facial oils left behind on the mask cushion.
Resmed have recently published…"
"Sorry for such a long delay to your question John, as we're inundated at the Hope2Sleep Charity (who run this group) at the moment. The reasons are not always given as a lot of sleep clinics are run by respiratory departments, yet with…"
"Hi Karen
Sorry but pleased as well to hear you've just been diagnosed, because once you're on CPAP you should start to feel so much better and should be protected from the many other conditions untreated sleep apnoea causes or exacerbates…"
"You're welcome Mark. I think we currently have about a 10 day waiting list, and as soon as you're at the top you'll be sent a link to complete the required COVID and health questions, and look forward to helping you again soon."
"Hi Mark
I've had a look at your previous pre-diagnostic from 4 years ago and due to the fact your ODI (oxygen desaturation index) wasn't particularly high (often people work very hard to maintain their oxygen levels during sleep) then the…"
"You really need to move this into our buy/sell/swap section of the forum (unless you've sold it aready) as it will get lost here in the support forum http://hope2sleepguide.co.uk/group/buy-sell"
"Good to hear the weight loss has helped you. This post really needs to go into our buy/sell/swap group though or it will get lost within the posts for support. Here's a link to re-post it http://hope2sleepguide.co.uk/group/buy-sell"
"Sorry it wasn't anything simple, although still worth checking the mask in case there's an exhale flap sticking if the mask is faulty. Perhaps call the clinic as if they're monitoring your therapy they may be able to see at problem at…"
"I agree with Jonathan to keep pestering in desperation rather than being angry at the mistake, although does need pointing out when you call them. I know how you feel as years ago when I got diagnosed with severe sleep apnoea I had to wait months…"
"That's normal Cheryl with any battery, including an expensive CPAP one, as very few batteries are powerful enough to run a CPAP machine with a heated humidifier and a heated hose. The Atom is very powerful and will usually allow the use of a…"
"David, you need to check both your mask and hose as this could be a loss of pressure or even co2 retention if it's a new symptom:-
HOSE - check carefully that no holes have formed in the tube and also check at both ends of it to make sure…"
"Alison you'd be better putting this in our Buy/Sell/Swap section than here. Here's the link http://hope2sleepguide.co.uk/group/buy-sell"
"Sorry to hear this as it's quite a worry that you no longer have CPAP with your sleep apnoea being severe Christine, as you'll no doubt know the health risks of living with untreated sleep apnoea…"
"That's great to hear Ian and we suspect those cheap copies are the issue here or even if people are using the SoClean without following the proper instructions. We'll see what the FDA say....."
"Looks like I'm attending on my own, except I happen to know there are lots already registered for our webinar lol."
Profile Information
- Treatment Being Used, if any?
- BiPAP
- If Machine Being Used, What Make or Model?
- Respironics PR One APAP
Devilbiss Sleep cube APAP (Known as Intellipap in the USA)
Respironics ASV
Resmed VPAP
- If Mask Being Used, What Type or Name?
- Respironics Fit Life
Respironics Amara View
Sleepnet Hybrid
Amara Gel
Devilbiss D100
Fisher Paykel 432
(just need 2 more, than I'll have one for everyday of the week lol)
Kath Hope's Photos
Kath Hope's Videos
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Children Also Have Sleep Apnoea
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Kath Hope's Blog
Medications Affecting Sleep
A number of drugs disrupt sleep, while others can cause daytime drowsiness. Your clinician may be able to suggest alternatives. |
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Medication |
Used to treat |
Examples |
Possible effects on sleep/daytime… |
Posted on October 16, 2014 at 22:27
CPAP TIPS
The following are my own tips in helping with my own treatment, and are not meant as a substitute for medical advice. However, I hope they prove useful.
CPAP/APAP/BIPAP TOLERANCE PROBLEMS
A lot of people find it hard to tolerate their equipment at first, so it's a good idea to set it up during the day whilst relaxing, such as watching tv,…
ContinuePosted on October 25, 2011 at 20:00
Comment Wall (96 comments)
- At 15:28 on February 12, 2021,
Sue Abson said…
Hi Kath - I've made my profile private to friends only, so that Sarah's number shouldn't now be public. But how do you delete a comment? I can't see a way of deleting my own?
- At 15:32 on November 2, 2017,
- Hi Kath I've being using a cpap machine for over 3 years the res meds one and full mask the last few weeks I have been getting bad headaches and dried sinuses making me feel horrid . I've got pressure on 7 a wooly cover for hose humidifier, I'm running out of ideas I did use a nasal spray at nite but was told to stop this I've joined today many thanks
- At 15:22 on August 23, 2014,
Hi Kath, thanks for the welcome. Having just started therapy after a 2 year struggle to get diagnosed I have a bunch of questions but I'll try to see if they've been asked and answered on the forum first before raining them down on everyone.
- At 10:26 on March 12, 2014,
Amelia Kennedy said…
Thanks Kath, I'll wait until Marion's able to reply. I don't want to disturb while she's poorly - it can wait for now. Thanks once again for your help x
- At 14:01 on March 10, 2014,
Hi Kath, thanks for the comment about Marion and sorry to hear she's not well. I've added her as a friend and am waiting for her to accept. I'm not sure where I should copy/paste my comment to her though as it already appears to be there? I'm not familiar with the forum set-up yet - that's my excuse anyway! x
- At 0:12 on March 8, 2014,
Sandra Gibbens said…
Thank you for adding me, already I've received so much support and information, and it's very much appreciated!
- At 15:51 on March 6, 2014,
Thanks Kath!
- At 15:12 on March 6, 2014,
Interesting ... thanks Kath, I'll take a look. I've also been using mine for years - 15 in fact and get along with it fine now (after a load of teething problems!). What I do hate is the weight and bulk of it. I'm worrying about how me and my husband can get away for a few days in the summer as he's just had his driving licence revoked due to ill-health and I can't drive. I guess I'll be pleading with Papworth again when I go in a couple of months to test me on other (smaller) machines - usually to no avail!
- At 19:57 on February 6, 2014,
June Ostiadel said…
Hi Kath, thanks again for the useful info. Firstly I did wonder if it's some natural oils coming out of my skin; I always wash before bed and use no creams. You mentioned the change in temperature during the night, well, my face often gets hot and I wondered if that could cause the mask to slip as well as a drop in temp.
I clean my mask every day, wiping with a little washing up liquid then wipe/rinse with clean wet cloth.
The hospital tried me on APAP but when the pressure rose it caused leaking so they change it for me.
I have a medium size mask (the hospital fitted it) and although I have a small face I have quite a big nose lol.
I visited the sleep clinic last June/July at St James Hospital in Leeds, when I was given the CPAP machine. I haven't been asked to go back yet; they only gave me one spare filter. How long would you expect a mask to last and how often should I change the filter?
NB I have just order some items from your website which may help me too; the cleansing wipes, the cream to help sore skin etc and the card (in case of emergency).
Thank you so much for your help, glad I found you
- At 6:23 on February 6, 2014,
I almost always get off get off to sleep with no problem at all; my mask appears to fit quite well, however, after maybe two or three hours I wake up; mask leaking usually from around top of nose. Trouble is when I awake I then want the loo, anyway, I have realised that if I wipe my face and mask with a damp cloth (I have this at the side of bed) after I've done faffing, I can sometimes go back to sleep for another hour or so, but, sometimes at this time I just cannot get the mask to fit without it leaking; then I give up.
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Latest Activity
Do tongue exercises work ?
Hi,I saw a study on the internet in which OSA was alleviated with tongue exercises, and some UK medics recommend exercises - thinking of Mike Dilkes, but I spoke to a local consultant and he said there was no evidence that exercises work. Is there…See More
"Thank you for your thoughtful reply Kath. I still think the incisor filing sounds credible because moving my jaw forward a little, makes everything feel better in my throat and face, so it would be interesting to read about some cases. But as you…"
"Ha, that's typical John, as your GP would have been able to give you a good examination.
Regarding the conflicting advice you've been given regarding jaw surgery, that's very difficult. We've come across several people who have…"
"Hi Sally
You're right that we do have to keep a good cleaning regime with our CPAP and daily mask cleaning will help prevent leakage, as a lot of this is caused due to facial oils left behind on the mask cushion.
Resmed have recently published…"
Cleaning products advice please!
I’m looking for some cleaning advice but the existing threads here are quite old so I am starting a new one. I realise that I have been appallingly lax with cleaning my ResMed AirSense CPAP which I’ve had for over 3 years. I’ve only been doing it…See More
"Thank you for your reply Kath. Well, I sort of lucked out because my GP was an ENT specialist who started getting into my case but he went elsewhere after Covid came so that was that.Year ago my dentist wanted to fiddle with my teeth to allow my jaw…"
"Sorry for such a long delay to your question John, as we're inundated at the Hope2Sleep Charity (who run this group) at the moment. The reasons are not always given as a lot of sleep clinics are run by respiratory departments, yet with…"
"Hi Dee Dee.
I'm probably a bit late to this, but would be interested in the Airfit F20 Large if it's still available. Happy to make a donation to charity too.
Thank you. "
"Hi i haven't heard back from you in a while - are you still selling your things? i had replied to your email with further questions regarding postal insurance and packing . Did you receive that? "
For Sale: Resmed Airsense 10 Autoset
Resmed Airsense 10 AutosetI have a Resmed Airsense 10 Autoset that is surplus to my requirements. When I was diagnosed with moderate sleep apnoea I received from the NHS a Resmed Escape S9 fixed pressure machine. With use I found my pressure…See More
Getting a precise diagnosis - scans ?
Hi all, so, OK I got a diagnosis of OSA and was given a CPAP machine.Finding out exactly what the problem is has not proven so easy. By exact problem I mean what the structural problem in my throat is - small jaw, blocked nose, big tongue, fat neck…See More
"Aha, hi Dee Dee I'd be interested in that Mirage FX if you still have it... ?"
"Hi Karen
Sorry but pleased as well to hear you've just been diagnosed, because once you're on CPAP you should start to feel so much better and should be protected from the many other conditions untreated sleep apnoea causes or exacerbates…"
"You're welcome Mark. I think we currently have about a 10 day waiting list, and as soon as you're at the top you'll be sent a link to complete the required COVID and health questions, and look forward to helping you again soon."
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