"Yes I empathise, as it was a similar story to mine with Virgin (not chasing them for my official confirmation). Even worse though was they said I couldn't use it and therefore couldn't fly due to my fit-to-fly letter stipulating I need it…"
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Kath Hope
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- United Kingdom
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Kath Hope's Discussions
Survey for UK CPAP Users
1 Reply
UK Members on CPAP for Sleep Apnoea Therapy Please consider spending a few minutes completing this survey for research led by the Imperial College, London who are working with some NHS Sleep…Continue
Tags: Imperial-College, Research, CPAP, Survey
Started this discussion. Last reply by Angel Eyes Feb 18, 2023.
'Rainout' - Water in the Hose and/or Mask from the CPAP Humidifier
We're having lots more queries this winter than normal at the Charity about…Continue
Started Jan 15, 2023
Hope2Sleep Charity Raffle
Only 24 hours to purchase Raffle Tickets as the draw is tomorrow (Monday 4th April), and we're looking forward to giving good news to 20 lucky winners!Tickets can be bought at…Continue
Started Apr 3, 2022
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, 2021
Kath Hope's Page
Latest Activity
"The link I provided to Vueling had sub-links Jonathan and this is from one of them about carrying medication onboard, and clearly states you can carry CPAP at no extra charge. I was impressed at the info provided from a flight company I'd not…"
"Glad you found us Antony. I had a sleep endoscopy by Bhik Kotecha many years ago but I told him he was coming nowhere near me with his scalpel lol, as I have too many reasons for my severe sleep apnoea. We have Dr Vik Veer now who runs the UCLH…"
"DVLA just create problems by not being clear about things. At least you won't need to tick the box next time as it says 'a condition you haven't reported before.' Glad this came up though as we get lots of DVLA queries at the…"
"I had to check out Vueling as it's not a flight company we've been asked about before (perhaps they're newish). If you go to this page on their website you'll see it states you can take the CPAP in its bag and store it under the…"
"Thanks for bringing this up Antony as it's going to cause confusion like it did with you. The most important word when completing the form is 'Syndrome,' ie Sleep Apnoea 'Syndrome.' The DVLA call it Sleep Apnoea…"
"I would always be guided by Dr Vik Veer, who is the UK's leading ENT surgeon specialising in snoring, sleep apnoea and UARS. He doesn't say the exercises will cure moderate to severe sleep apnoea, but can help by strengthening the airway…"
"Good info thanks. I personally prefer nasal strips though."
"An apnoea or hypopnoea of less than 10 seconds won't be reported as an event, in the same way they're not reported on a sleep study, as that's the cut-off point."
"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"
"The o2 ring is good if you can retrieve it 😂
Yes I've seen Nick's videos and he has a lot of great content, but it doesn't mean everything is 100% correct (same for us all as we just try our best with the knowledge we have).…"
"The hospitals see far more than we see on the app in their clinical software, and do bear in mind that it's the opinion of a Youtuber you must have seen, as sleep professionals worldwide have used their software for many years, and…"
"Good to hear Alex, and tell them you're willing to take a cancellation at short notice and it might be less 🙏"
"Sorry to hear this Alex, and that does sound like a long wait for severe sleep apnoea. The problem has been due to a worldwide CPAP shortage so this is happening at a lot of clinics. Take a look at nearby clinics on this link but you'd need to…"
"We hear you Dave and empathise, as it's not 'normal' tiredness that comes with untreated sleep apnoea. Once you're on good CPAP treatment every night and for 7-9 hours of continuous sleep you'll start to feel better though.…"
"You're welcome Leoni and hope you're better soon x"
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
Added by Kath Hope
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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
"I've found they get lost easy. The Airmax one is £10, lasted a couple of weeks before disappearing.The white ones are quite cheap, work out about 50p each off Ebay.I was wanting to experiment with making a mould and crafting my own…"
Has anyone been told root cause of their OSA?
Hi, I'm having trouble getting diagnoses for anything from the NHS recently. A pressing one being what exactly causes my apnea.Is it like this for everyone or do some people get told what is the specific physical problem and root cause?See More
"Hi Kath yes I was pretty disappointed when the consultant told me this - as I had some papers sitting next to me saying studies showed an effect - and that's evidence.Looking at the exite thing it says, "has been clinically proven to…"
"Hi Sarah,
Im interested in the Philips Dreamstation 2 Auto CPAP that you have for sale and would be grateful if you could contact me on 07909996432 at your convenience to discuss.
Im not available durings parts of the day so if there is no answer…"
"My sleep apnoea just requires me to pop a mask on before I go to bed. But your circumstances may be different."
UK Attendance Allowance
Does anyone know if Obstructive Sleep Apnoea can be the basis for a claim for attendance allowance in the UK?See More
"Yes I empathise, as it was a similar story to mine with Virgin (not chasing them for my official confirmation). Even worse though was they said I couldn't use it and therefore couldn't fly due to my fit-to-fly letter stipulating I need it…"
"Ah, yes, I hadn't spotted Vueling's statement. Thank you. And your tags are very similar to the one I purchased at the start of my CPAP journey in the 15+ years ago.
My only bad experience (as I have written about here) was…"
"The link I provided to Vueling had sub-links Jonathan and this is from one of them about carrying medication onboard, and clearly states you can carry CPAP at no extra charge. I was impressed at the info provided from a flight company I'd not…"
"I have a large swing-tag attached to mine. This appears to be an up-to-date equivalent https://www.cpap.com/productpage/medical-identification-luggage-tag-cpap-equipment
The only short-haul flight I have taken was with British Airways, and it…"
"Glad you found us Antony. I had a sleep endoscopy by Bhik Kotecha many years ago but I told him he was coming nowhere near me with his scalpel lol, as I have too many reasons for my severe sleep apnoea. We have Dr Vik Veer now who runs the UCLH…"
"DVLA just create problems by not being clear about things. At least you won't need to tick the box next time as it says 'a condition you haven't reported before.' Glad this came up though as we get lots of DVLA queries at the…"
"Thanks Kath, I'll hope that they don't pick up on it if I don't tick that box in three years time! I'll apply in good time just in case."
"So pleased to have found this site, thank you. I'm a retired doctor and have had OSA for about 20 years despite having a BMI of 23, only ever sleeping on my side and not smoking. Over that time I have had five successful procedures of…"
"Thanks Kath, I had tried to contact Vueling about this but hadn't found the web page so that's really helpful."
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