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Sleep Apnoea Forum Bringing Help + Support to the Patient

Kath Hope's Comments

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At 15:32 on November 2, 2017, YasminVaughan said…
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, Bernadette Plunkett said…

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, Amelia Kennedy said…

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, Amelia Kennedy said…

Thanks Kath!

At 15:12 on March 6, 2014, Amelia Kennedy said…

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, June Ostiadel said…

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.

At 17:48 on February 5, 2014, June Ostiadel said…

Thank you Kath it's nice to be here.  I was diagnosed with Sleep Apnea about 5 months and have just about mastered the equipment, however, on some occasions I struggle and unfortunately ,I have to sleep without using the machine all night. I found this site when someone on Health Unlocked recommended it

June

 

.

At 21:41 on October 22, 2013, JOJO said…

Thanks fro the welcome kath i can see this site is going to be veryhelpful for me

At 19:08 on October 13, 2013, debbi-jayne challenger said…

Thank you so very much for reply especially on a Sunday when Im suree you must have better things to do!! I managed in between the torrential rain, to get in an hours walk with the dogs and theyve had a good grooming session today!!

 

I am so very sorry to hear of your losing your mum at such a young age.  So terribly sad and I do feel for you but what a testament you are to her memory in what you are doing here!  So many people don't know about this illness and lots of people just laugh at me when I tell them as they don't undertsnad how dangerous it can be. 

 

I have been sitting here in floods of tears reading through all of this as I feel at last, as though maybe someone now can help?  It's true, it is a very isolating experience and I have felt  so alone in trying to cope with it and so ill all the time as nothing seems to have worked over the past 3 years.  I so need to feel more positive and energised and maybe with your help I will.

 

Thank you so much. xxxx

At 12:18 on October 13, 2013, debbi-jayne challenger said…

Hi Kath. Thank you for your message.  Yes I am the proud owner of 4 collies and a GSD x collie plus I sponsor a deaf and blind collie too.  Love my dogs and have owned and worked collies in agility for 30 years!!

 

I was diagnosed with OSA 3 years ago.  I tried the CPAP machine for over a year but found it wasn't helping and was in fact so uncomfortable and waking me up more than I was waking up without it.  I am under Papworth Hospital but apart from getting me to try several different masks, none of which were any better (I sleep on my side and breathe through my mouth) they have been pretty unsympathtic to be honest!  A year ago a nurse suggested I try a mandibular device and I tried this for a year.  In principle I like the idea as the CPAP is just so awful for me.  However I have been becoming more and more ill in that it really wasn't doing its job and half the time was falling out of my mouth and spending most of the night under my arm!!!!  Papworth discharged me in January as I wasn't using my CPAP anymore and they said I was wasting their time!!

 

3 weeks ago I went back to the CPAP and have asked my doctor to refer me back to Papworth and I have tried to be a lot more patient and to change my mindset on this horrid thing but it leaks all the time, is noisy and wakes me up every hour, and, despite having the humidifier, I have such a dry cracked mouth all the time and my nose is so pinched and I wake up and go to work with great bug "tram lines" down my face - not very attractive!  Plus I feel so blimin awful.  Am normally a very upbeat person, have a lot of hobbies but nowadays I seem to feel so down, have no concentration and feel exhausted permanantly and fell asleep driving once!

 

I am hoping I may find out more inforomation and get some help as I am at the end of my tether now.

 

Sorry for long post - just fed up with this!!

At 17:15 on October 4, 2013, Lee said…
No sorry I'm using cpap at the moment but not getting on very well
I'm being fitted with a dental devise in November for mandular mouth guard in the hope that this will work very well just had enough now so tired
At 6:23 on July 30, 2013, Carl Wilkins said…
Hi Kath
Thxs for your message , glad to be on board , so sad that you lost your mom at such an early age but one thing you can be sure of Kath is she will be very proud of what you have achieved with your website helping & assisting others as they cope with the problems encountered with sleep apnoea, keep up the good work & well done
At 19:55 on May 6, 2013, Philip Dallinger said…

Hi Kath

They say a little knowledge is dangerous just like me looking at all those wiggley lines!!

Phil 

At 14:08 on April 8, 2013, Mary Zimlich said…

Kath, thanks for the welcome, I'm glad to be here to get my  daily OSA support "fix".  SleepGuide is on the wane.  We never see Mike anymore.  I hope that when he lost weight he didn't need CPAP any longer.  Am I right in thinking last month you had a two year anniversary?  Good Work with the forum and your business. 

Mary

At 10:30 on March 19, 2013, ghrame corbett said…

kath im sorry but i had computer problems with emails yesterday and could not get on site. iregistered as a new member to get back on.i think i finally sorted the problem. i hope you are well

At 13:32 on March 9, 2013, Sheila Skelhorn said…
The only pain is the filters need changing evert 18-21 days. The hospital are complaint as they send out only 3 at a time and want you to make them last 3 months. I'd I don't change them every 18-21 days the alarm keep going off much to our annoyance
At 9:31 on March 8, 2013, Sheila Skelhorn said…
Thank you for your kind comments my boy has aspergers and other disabilities so I speak on his behalf. He has mild to moderate communication problems but overall a happy pleasent young man .anyone know if there is anything I could use to clean the insides of the hose, can't use water as it doesn't dry

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Latest Activity

Edam updated their profile
19 hours ago
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Very interesting conversation; many thanks. Philips says (website) the machines are expected to last about 5 years. We’ll see.  I think that if you travel a lot and/or for extended periods you need something very portable. if you are away…"
yesterday
Sleep2snore replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"It is the manufactures own rules, but they will not look at a machine bought overseas under warranty. If you ask ResMed, they will only say that they will not honer any warranty if you buy a machine abroad. They know that they can't stop you…"
Monday
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Hello, Yes, it is a very old fashioned way of doing business. Apple used to do the same years ago until they realised that people travel and use the Internet, and now all their products cost more or less the same globally. Furthermore, as we still…"
Monday
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Not all the clinics like supplying the FitLife (total face) mask as it's the most expensive one.  It's been a favourite one of mine for a long time, and in the early days I had to purchase it myself, but my clinic does now.  Hope…"
Sunday
Kath Hope replied to Chris Vesey's discussion Dvla / hospital
"Yes it's annoying Chris.  However, due to the fact that the DVLA themselves don't appear to know how to handle this all correctly (it depends who you reach at the time) then it's advisable not to email or ring them, but to rely…"
Sunday
Kath Hope replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Welcome to the forum N.  Sorry to hear about your experience, and in actual fact the USA Store have broken the rules sending the machine from the USA as they're not supposed to.  Although they can be cheaper, it can work out more…"
Sunday
N replied to Bernadette Plunkett's discussion Advice on ordering a CPAP machine from overseas
"Hello, I ordered a DreamStation Go Auto CPAP machine from the CPAP Shop in the US - as advised on the Philips US website.The machine is not available in the UK and I wanted it for travelling - I have a DreamStation with humidifier from the NHS but…"
Sunday
N replied to John Wilkinson's discussion Dreamstation humidifier heated hose and simplus 'mask type' settings
"Hi John, I had the same problem until I disvovered that the setting for the heating was “adaptive” (works following a piece of software that switches the humidifier on/off during the night), as opposed to “fixed”. I changed…"
Sunday
N replied to Edam's discussion Amara view mask
"Hi Edam, There are several reviews on YouTube about the Amara; the results are very  mixed. I tried it and I found that it leaked too much; a real pity as the idea is very good. I then tried the ResMed F-20 (full-face, no forehead support) and…"
Sunday
N is now a member of Hope2SleepGuide
Sunday
Chris Vesey posted a discussion

Dvla / hospital

Hi,Wrote to the dvla for the correct form, phoned them when nothing arrived, form came a week later. Filled it out and sent it back 3 weeks ago, a week ago I had a letter a week ago saying they had written to the cosultant, resmed agreed to send a…See More
Sunday
Sven Mischkies replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi, thanks for the responses. I tried to loosen the straps to the point just before it starts leaking, but to no avail. I thought the Amara View would be the worst mask for me, because it sits right there where I get the numbness from the…"
Friday
Edam replied to Edam's discussion Amara view mask
"Respironics have confirmed that the slot is 2.5cm on the small and mediom cushions and 3 cm on the large"
Feb 15
Edam replied to Edam's discussion Amara view mask
Feb 15
Edam posted discussions
Feb 14
Edam replied to Edam's discussion Amara view mask
"Thanks for that. After looking through 7 pages of reviews I found somebody who had measured the slot at 1in by 0.5 in at its shortest.  As my nose is about 1.25 in wide any movement would cause a major leak. I wish Respironics would publish a…"
Feb 14
Sleep2snore replied to Edam's discussion Amara view mask
"There is some information here https://www.cpap.com/blog/amara-view-respironics/ scan down the page to see helpful comments and a guide."
Feb 14
grumpycamel updated their profile
Feb 13
grumpycamel replied to John Wilkinson's discussion Dreamstation humidifier heated hose and simplus 'mask type' settings
"Hi John, It may help if you switch on the preheat function on the DreamStation main menu before you go to bed. It warms up the humidifier for 30 minutes and switches itself off to get things warmed up. I tend to have the hose and humidifier on 5…"
Feb 13

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