thanks x

futher to my previous enquiry regarding itching scaley scalp.

I was recommended to rub baby oil into my problem areas.

this has had the effect of softening the affected areas after which i can literally dig the problem areas out!

unfortunately this still leaves a raised scared area on my scalp.

having showed this to a medical officer onboard a recent cruise she said it should respond well to a steriod shampoo . no doubt that will come with the same disatvantages of Betnovate. I do nonthe less feel this is my only course of action.

I will report back once ive given it a try.

As a recent user of the resmed quartro can I make a suggestion to any other new users that is to say that in my opinion the secret to success for me was to may sure the face is adequately covered by the mask and sealed properly - this may mean that perhaps it needs tightening just that little bit more.further to this just dont go leaving it to long before you clean the mask as it seems that a build up of residue from breathing through it

can result in the mask seal being broken.

I dont know if this will help others but Im sure its working for me.

have found the babyoil works to a degree have to see doc this thursday and hope this steriod shampoo will properly clear up  the problem - will let you know. just ckd the face mask and its a standard resmes quartro which do,snt leave any marks on the face unless you overtighten it. incidentelly is there a manufactured bracket to fit the hose lift to the fall ?

regards

Tony Westcott

Look forward to hearing about the steroid shampoo's effects.

I have used the standard Resmed Quattro and even without over-tightening the mask, it still left awful marks - and I tried different sizes.  It's definitely a case of 'what works for one, doesn't always work for another.'  I have a permanent nasal bridge scar from that mask, which I have to remember to hide with makeup each day :D

You must have missed the discussion we had on here a fortnight ago about the hose brackets.  We've got them and also the camping spikes.  The fixed bracket is brilliant, as I'm now using it and have put it higher up on the wall behind me, so there's even less tube in the way now.  Here's a link to the bracket http://www.hope2sleep.co.uk/products/86

Just thought I'd let you know what I look like in my Funeral Directing gear. Notice the red rose. I don't usually take a dog with me though, couldn't find a brown labrador or a black labradoodle!

99 here kath

Thanks Kath for taking the time to help me, especially when you were so busy with your business trip. I am so grateful for any advice from you all. I've decided now that it would be best if I did purchase a apap machine as I loath the idea of having to immerse myself in this process of 'have I done the right thing or not' if for some reason CPAP is not quite right for me. Last night my AHI was 5.2,which is the lowest I've had over more than 3 weeks of trialling. Even though I was woken a few times with a mask leak/gale blowing in my face. The APAP machine is set as a CPAP of 10 the ramp being 30 mins, in order for me to get the experieince of a set pressure .  So I wonder does this mean that had it been in APAP mode I would still have gotten the same AHI result? that it is just co-incidental that the AHI is lowest yet?  Initially the tech. did not have the ramp mode on the previous night when in hindsight I was only able to use the machine for 4 hours and had a AHI of 11.3. {Must have flung the mask completely off during the night] So is the ramp feature used by a majority of users? Hope my ramblings make some sort of sense. I am definitely no tech head but am very keen to learn to manage my own condition and machine. Any further advice from anyone on the forum is gratefully recieved by this niave newbie. Thanks a lot for having this great forum Kath & Mike it is so helpful. I don't feel quite so alone with this new turn in my life. Cheers Marg

Sweet dreams from OZ Kath

Hi Kath...thank you...I know this will help me, as I have no one in my life who has the same condition, so it will be good to hear how other people cope and hopefully get some hints and clues on how to have a better sleep..Deb

Hi Kath, thanks for the welcome. Great forum and blog!

 am wondering if it is just me or is it normal...but my nose is now very sensitive it is tender to touch and I seem to sneeze a lot more and get hay fever more frequently...

Thanks Kath for such a warm welcome as someone very recently diagnosed and new to this sudden and life changing condition it all seemed at bit daunting and worrisome. Your support has already made me realise there is help out there and my apnoea has become a lot less worrisome

Thank you

Hi Kath Thank you for welcoming me. This looks like an amazing site!! Hope to be chatting soon!! 

Thanks Kath; I want to have the best chance of success with my machine when I get it.  I know someone who was diagnosed with SA some years ago and gave up on the CPAP very quickly; I am determined to try anything that will help me to get used to it, so thought it best to be prepared!  

Kath, hope you had a good Christmas and I better wish you and your family a happy new year, it is new years eve here. I didn't adopt social media from the start and still try to adapt it, I still dont have a lot of time for it would rather spend more time on SA sites, anyway Happy 2013.

Thanks Kath, I had a shocker here last night, I like going to bed at the same time each night 9.30pm but last night stayed up till 11.00pm first mistake, then at midnight just as I was getting into a nice deep sleep some selfish person started setting off fireworks outside my place, it would have been quieter in Afganistan or Iraq grrrr, I woke up and took my mask off to see what was going on, then forgot to put it back on. Anyway my first new years whinge, hopefully tonight will be quieter. Have a good night sleep.

Kath, not sure if you subscribe to this online magazine, it's free, some things go over my head but other things are interesting.

http://www.sleepreviewmag.com/business/18253-retail-cpap-products-a...

Hi Kath, Thank you for the welcome and for the info about new member, Catherine; it seems that she has much the same respiratory difficulties as me but has had more time to have learned new swear words to throw at the mask!   I'm looking forward to making full use of your wonderful site and feel reassured that there are so many people out there who are willing to advise or encourage.  

Hi Kath, I just recieved my hose lift today, and not sure whether to put at the back of my bed or the side, also if i should raise it slightly ? any ideas ? as it's the first time i have had one.  thank you. jeannie

Thanks Kathy for welcoming me! I have read up real well on sleep apnea on Daily Strength site. i dont understand what the numbers mean yet. All I know until March 1, 2013 is that out of 456 minutes of sleep i have 156 sleep apnea events and a total of 36 rem sleep and that the sleep apnea was worse during that time. i will find out more on March 1 when i see the pulmonary doctor about the results of the sleep study and then they will be setting up another sleep study with a cpap machine I think. One concern I have is that I also have insomnia and that is why I take seroquel when I sleep. i read that sleep specialists dont really want people with SA to use sleep aides but I have not slept naturally in years and years. So I hope they dont take me completly off of it. i have had my doctor cut me down form 400mg to 50mg gradually so that is much better. Thanks!

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

Hi Kath

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

Phil 

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!!

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

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

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

.

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.

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

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!

Thanks Kath!

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

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

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