Kath Hope's Comments

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. 

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

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

Thank you for adding me, already I've received so much support and information, and it's very much appreciated!

Thanks Kath!

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!

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

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.

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

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

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

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!!

Hi Kath

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

Phil 

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