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?
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
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
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).
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
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.
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.
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
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
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
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
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
"Hi
The SleepCube was a private purchase, as way back then my local sleep clinic assessed patients by filming them overnight, whilst wearing an oximeter, and only issued CPAP machines without humidifiers. There was no remote monitoring and…"
"Yeah I was wondering about email address. I thought probably if they wanted me to mail them they would have given out an address. I can imagine heart data is considered more acute than sleep data, so it would make more sense to have that…"
"Hi.
I didn't use PatientsKnowBest (ironic name), but I have an email address for my heart department for sending in ECGs. I was just saying that they may be able to review a PDF when then cannot review a data file from your O2 ring.
I am…"
"On an unrelated topic, I've been able to send ECGs by PDF to my heart clinic.
On the subject of Resmed and apnoeas, take a look at https://youtu.be/ufOOAfyzZso?si=Tpdl4EEiCQBZR4iD&t=276
Your machine may be under-reporting.
Good…"
Moving some furniture my long lost O2 ring continuous oxygen saturation monitor turned up. So I've been wearing it and it tells me I have loads of saturation drops during the night even though my Airsense 10 says I have very few apneas.So I get two…See More
"Hi,
Just thought I'd give an update. So, I had my appointment with the NHS sleep clinic which was much quicker than I anticipated and I've now had the overnight sleep study. My AHI is now 6, down from over 30, so I'm…"
"Hi Sally from what I read the airsense doesn't suffer the same foam degredation issues as the infamous Phillips machine.I can conceive it's possible that microplastics may be shed from the flexible main tube.What worries me more about the…"
"Hi
My sleep clinic discharged me, saying they were happy I was self-managing. Roll on a decade and the cardiologists taking care of me were very unimpressed and I was re-enrolled. I expect remote monitoring with current generation Resmed…"
"Hi Jonathan,
Thanks again for the info. My cpap *should* be monitored by the NHS though I haven’t had any contact from them since pre-covid. I checked out the link you gave to access extra data and I think that’s going to be…"
"Hi
I have the ResMed Airsense 10 Autoset (APAP). It's monitored remotely by my NHS sleep clinic and I believe they can make changes to the settings. I don't know whether they are notified if I make changes, nor whether they…"
"Hi Jonathan,
Thanks for the reply. I'd say that I'm fairly technical. I have the ResMed Airsense 10 Elite machine. I've discovered that I can upload data wirelessly from my machine and having lowered the pressure by…"
"Hi
You don't say how technical you are, or what sort of machine you use. However https://www.sleephq.com/ has software which allows you to upload data from compatible machines, and analyse your sleep "score", including a…"
Hi,I've been on Mounjaro for about 3 months now, not primarily for weight loss, but I have lost weight around my face and neck. I've noticed that I am increasingly getting air bubbles in my mouth which of course is disturbing my sleep (and my…See More
I was reading an article in the I newspaper today written by a journalist who had her blood tested for micro plastics and was shocked by the results.…See More
I’m selling an Ventura Full Total Face CPAP Mask Large and two spare liners. I bought it new from the Hope2Sleep shop, but it is not suitable for me. Only used for about two weeks so I have washed it thoroughly. Because of this, it is very much…See More
"I put in a claim for PIP which was denied and now I am over 66 and on pension I tried for AA. Denied again.I have other health conditions ( Diverticular disease and Bile Acid Malabsorbtion ) which I consider hard to live with and they refused all of…"
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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?
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
.
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!!
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
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
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
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