Viewing 20 posts - 41 through 60 (of 81 total)
  • #77950
    Re: POLL – Non-invasive Ventilation

    Thanks for the ideas. I get allergies and nasal congestion so that combined with not fancying a chin strap at the moment, so had trouble with a nasal device.

    I have tried it twice in bed just for ten minutes and am working through a few things like I will have to connect up before going to bed because it’s difficult for hubs to place the head straps etc when laying down (and the main connect button is the side that is pillow down!). One thing I do find is that the bridge of the mask either goes over the corner of my eyes (the cuff does but not air which feels odd especially when I want to move my eye or blink!), and if I pull it down to a more natural position the cuff then closes off my nostrils and the lower part of the mask cuff is almost off my chin! It’s like my face needs to be longer as it fits hubby fine!! I wonder if my little pumpkin head shape needs a paed mask or something!!

    So, some things to sort out! Mastering some communication and a trip to Maplins means hubs will make me a buzzer which can travel on me so I can use in other situations when I need to call my PA etc where a phone won’t do.

    criptic
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    #77951
    Re: POLL – Non-invasive Ventilation

    criptic

    always had a problem with mask fit, a resp nurse told me once that they are primary designed for larger males. :roll:
    its funny thou as ive only every meet small ladies :lol: I harrassed a rep at clinic once about the limited number of sizes.

    What mask do you use?
    currently using puritan bennett breeze mask but Im waiting on a mask called sleepweaver. its a cloth mask that inflates itself arround your nose creating a seal. theres a cool video of it on the sleepweaver.com

    I normally put my headgear on just before lying down as I cant breath at all lying down without vent.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    #77952
    Re: POLL – Non-invasive Ventilation

    just doing a spot of ebay shopping.

    Have any of you guys ever tried or seen a vent contour pillow.

    ebay Item number: 120645023023

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    #77953
    Re: POLL – Non-invasive Ventilation

    Hi Cat,

    have seen them before online and always wondered if they would be of any use. Not sure what they are made of?? Am going to have a look. Am having trouble with pillows at the moment.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    #77954
    Re: POLL – Non-invasive Ventilation

    @catatude wrote:

    criptic

    a resp nurse told me once that they are primary designed for larger males.

    Yes, fit hubs great! I am using a flexifit mask – 431 (version 432 and a newer one exist).

    Still can’t get it to comfortably sit on my face without holding in with my hand to find a spot that is not pressing so hard on my nose bridge which makes me feel queasy! So still fiddling with adjusting the strapping but as some reviews of the mask say, the tighter you do up the strap on your neck the more it digs in and chokes you or cuts your skin! Then my head flops on knocks it all out of place lol. So, nowhere near trying to sleep yet.

    Cloth one looks interesting! Don’t you wish there was like a naidex of all things vent related aimed at users that you could go round trying out different things! Hygiene wise how that would work I don’t know but that would be cool. I’d pay for things myself if they were super useful!!

    criptic
    Participant
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    #77955
    Re: POLL – Non-invasive Ventilation

    @catatude wrote:

    just doing a spot of ebay shopping.

    Have any of you guys ever tried or seen a vent contour pillow.

    ebay Item number: 120645023023

    Hi,

    I’ve seen four types and was discussing this, this morning with hubs. Have seen the one in your photo, plus this similar one which comes in two sizes and two foam types and I have a link that describes the material etc. Not sure if links can be posted on the forum but here is a piccy. I’ve always had a problem with head role and prop up the side of my head on rolled up flannels – but overnight they go flat and my head turns to the side and sinks into the pillow. Now trying the mask I find this happens much quick so I might try a shaped pillow.

    criptic
    Participant
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    #77956
    Re: POLL – Non-invasive Ventilation

    Don’t you wish there was like a naidex of all things vent related aimed at users

    totaly that would be ideal. try before you buy. even holding it would give an idea of fit.

    with regards head gear fit. I know its tempting but try not to go too tight as this makes leaks worse. There is this cool looking comfort pad on ebay to go on the bridge of your nose ebay number 320626032779 looks like the jelly party feet you put in high heels :lol: ment to ask my vent nurse about it but forgot.

    I had a mask years back, like the one you posted. I found it helpful to put a spacer under the plastic part on the forhead section. it lifted the mask a away from my face at the top of my nose. giving mask a better angle.

    Did the Respiratory dept only give you the one mask to try???

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    #77957
    Re: POLL – Non-invasive Ventilation

    I’ve seen four types and was discussing this, this morning with hubs. Have seen the one in your photo, plus this similar one which comes in two sizes and two foam types and I have a link that describes the material etc. Not sure if links can be posted on the forum but here is a piccy. I’ve always had a problem with head role and prop up the side of my head on rolled up flannels – but overnight they go flat and my head turns to the side and sinks into the pillow. Now trying the mask I find this happens much quick so I might try a shaped pillow.

    Have you still got the link?. Is it a UK shop? its really the shipping from the USA that bothers me as its as much as the pillow. and the fact that it may or may not make it past customs. I tried buying a mask and velour mask straps once, and didn’t get them as they were counted as unlicensed medical supplies.

    I end up either holding mask(out of habit, mostly fits now I’ve customised) or with my hand under my head all night to keep jaw inline.

    also got a bed sore on my ear that just wont heal. :lol:

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    #77958
    Re: POLL – Non-invasive Ventilation

    Well, I’m trying a link – if it gets taken off then will pop it up elsewhere.

    Cushions/pillows and other BI/CPAP things for uk:
    http://www.eu-pap.co.uk/

    criptic
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    #77959
    Re: POLL – Non-invasive Ventilation

    I was interested in a new type of nasal pillow and had a little look to see how much it would cost – if I had been standing I think I would have fallen over :shock:

    I too have to hold my mask in place sometimes, and nearly always hold the tube to stop the pull – you can tell as well, my index finger is the only finger on my left hand that extends properly because I use it at night to hold the tube.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    #77960
    Re: POLL – Non-invasive Ventilation

    – if I had been standing I think I would have fallen ove

    :lol: yes they can be a little (alot) exspensive. Ive ended up on puriten benets mailing list. my head gear cost about £100 :shock: and its not all that sturdy. need about 2 a year cos I need to bend it a little to fit better they end up snaping over time.

    too have to hold my mask in place sometimes, and nearly always hold the tube to stop the pull –

    I got these little velcro clippy things off the nurse. (they used to come in the disposible tubing packs) velcro loops around tube and I clip it to me bed. really good with an electric adjustible bed as its a pain when I lower the pillow end and squish the tube :lol: Well I too Nearlly feel off my seat. on the eu.pap shop it cost,, wait for it, £19 to 2 little clippy things WOW

    Does Mask and Head gear supply differ between health boards. My resp clinics always alright about letting me try new masks and Ive never been asked to pay :?: .

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    #77961
    Re: POLL – Non-invasive Ventilation

    Well, I’m trying a link – if it gets taken off then will pop it up elsewhere.

    Cushions/pillows and other BI/CPAP things for uk:
    http://www.eu-pap.co.uk/

    thanks criptic

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    #77962
    Re: POLL – Non-invasive Ventilation

    at some point I seem to have ended up on Resmeds mailing list. :) got a flyer in today for one of the Patient Open Days!! Cant see anything about entry fees to event but it may interest someone.

    Centre for Healthy Sleep – London

    10th – 11th June 10am to 4pm

    register attendance at http://www.realsleep.co.uk

    Mask Care and Cleaning for demonstrations and advice
    Latest ranges of masks and devices
    Technical Services for device-related technical information
    ResMed ‘Through the Ages’ masks and devices
    SATA (The Sleep Apnoea Trust Association)

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    #77963
    Re: POLL – Non-invasive Ventilation

    That’s interesting – I can’ t believe how there are so many mask types yet when you read from the various forums of vent users for whatever reason, the majority of people either have to hold it, stuff it, pull and poke their way through the night!

    I liked my first mask because it tucked under my chin. However, the air was blowing out the nose sides and the whole thing shifting around all night. Anyway, I ended up with three pressure sores so had to add plaster and tea tree oil to the list of things to do at night. You can see some pics on my twitpic account below. I can’t tell you how sore it was.

    http://twitpic.com/photos/crip_tic

    So then I tried an eye mask to stop the air from blowing and drying my eyes but that was too thick and caused cheek leaks.
    I tried cotton wool poked under the mask, just on my eye and taped versions – no luck.
    Took apart the headgear which buckled only on the right (the side I lie so hubs struggled to clip it on and hold my head and mask at the same time). That is now on the left and I think is better but it meant actually breaking apart glued parts of the mask so it is now taped until we glue it.

    Anyway, then the hospital sent me a quatro mirage which was a good shape (smaller) but no chin tuck (mask rest below bottom lip) and because I can’t breathe without it on I was so tense that my jaw would drop out of the mask and I would die that I didn’t sleep much!! However, it also leaked at the cheek quite a lot – so back to the original mask I went…

    Current set up consists of felt stuffing under the forehead piece and making the mask very clingy by washing it before bed – it is getting rather silly! We imagined we would just put it on a voila!! My nose seems to be permanently humped now as it all swelled up. What a to do. do any of these stay in the right place!!!

    I wish I had a magic wand that let me try out loads of different types with lots of types of head gear – they are both fab sitting up but as soon as a lay down the dynamics / shapes / gravity sprung into action and caused problems.

    So on we go…

    criptic
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    #77964
    Re: POLL – Non-invasive Ventilation

    my current mask is getting (not old) but lived in, and cause it dont fit all the great to begin with. when it gets abit lived in, it leaks and makes this really annoying farty sounds when the air excapes :oops:

    Ive had the alien bumps and lumps, had one that looked lke a third eye for a time. got a cut under my nose that wont heal.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    #77965
    Re: POLL – Non-invasive Ventilation

    @catatude wrote:

    my current mask is getting (not old) but lived in, and cause it dont fit all the great to begin with. when it gets abit lived in, it leaks and makes this really annoying farty sounds when the air excapes :oops:

    *nods* I can make quite impressive noises when that happens :oops: am always saying ‘it wasn’t me’ :roll:

    The only thing that has ever worked is sticky-backed towelling on the gel bit that goes round nose. However I am on the vent more at the moment and my nose is not getting much of break :(

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    #77966
    Re: POLL – Non-invasive Ventilation

    Does Mask and Head gear supply differ between health boards. My resp clinics always alright about letting me try new masks and Ive never been asked to pay :?: .

    Well, so far I’ve been able to try two (or three if your count the nose one I had to get used to a vent sitting up). Flexifit 431 and the mirage. Both left me wondering if I should put in for a nose job. I find out that the models which are 2 above the flexifit have been improved with extra cushioning to avoid he nose dents – but are not available from my local NHS due to cost (asked today). I have also seen reviews that the nice soft bit breaks down :-( So the only thing they can offer me now is cream basically to patch up my nose.

    Did anyone get to try out a selection then? I wonder how spend on such equipment varies? I guess it’s cheaper to dish out barrels of cream and plasters than pay £100+ for a mask?

    criptic
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    #77967
    Re: POLL – Non-invasive Ventilation

    I am going for a 2-3 night stay to try out some new ventilators next month, I will make enquiries about masks and headgear available. Don’t think my nose can take much more.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    #77968
    Re: POLL – Non-invasive Ventilation

    Where do you have to go? Brompton? I hope you find something to work x

    criptic
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    #77969
    Re: POLL – Non-invasive Ventilation

    Yup, I go to the Brompton. Bit of a trek, at least a two hour car drive each way but hoping it will help.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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