Viewing 20 posts - 1 through 20 (of 81 total)
  • #73361
    POLL – Non-invasive Ventilation

    Here is Talk MD’s second poll. We would like to know your experience of non-invasive ventilation (e.g. Bi-pap) even if it is just to say you do not need it.

    I am particularly interested in this subject as I have been a Bi-pap user for 17 years and have been asked to join a discussion about it at a future patient day. It would be great to hear of your experiences as well as learning numbers from the poll.

    As before, you can change your option once you have voted in the poll.

    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
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #77911
    Re: POLL – Non-invasive Ventilation

    As a user of Nippy 3 for the last three years, I find it invaluable. My sleep pattern has improved, also my alertness during the day, and less headaches due to reduced carbon dioxide intake! Once the noise from the machine and the air escaping from the mask losing contact with the face, is got used to, then much improed can be derived from this machine.

    alisonwright
    Participant
    Posts: 2
    Joined: 01/12/2010
    #77912
    Re: POLL – Non-invasive Ventilation

    When I was first put on Bi-pap my morning headaches and nausea stopped and I was much healthier. The number of colds and chest infections reduced. It took a little time to get used for me too, the skin on my nose broke down and I was also plagued by the air escaping and blowing in my eyes. Now it is just part of my life, my routine and I am very glad that I have it.

    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
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #77913
    Re: POLL – Non-invasive Ventilation

    I have an appointment next Tuesday for another overnight stay in the sleep clinic to try an Apap machine. Apparantly I dont’t breathe properly at night
    Is this the same as a Bipap? or Nippy?
    How long does it take to get used to wearing it & is it noisy?
    Will the husband banish me to the spare room. I hope that getting the machine will reduce the total exhaustion I feel just now.
    I will answer the poll when thing are a bit clearer.

    ValerieB
    Participant
    Posts: 10
    Joined: 21/09/2010
    #77914
    Re: POLL – Non-invasive Ventilation

    Hi Valerie,

    APAP and BiPAP both use positive airway pressure to provide respiratory support. The A stands for automatic and I have just read that it senses when extra pressure is required but the rest of the time remains at a low level. BiPAP uses bi-level pressure (2 levels, inspiratory and expiratory) at higher pressures which is what I require. Nippy is a brand name of a particular ventilator I think.

    I would imagine the masks are similar across all the types of ventilator. I use a nasal mask that goes over my nose but there are other types you can try to see which is most comfortable. The machines are much quieter than they used to be and more portable. My family and carers have got used to the noise and when I moved out my sister said she missed the noise to begin with! It can take a while to get used to using it but the pros outweigh the cons in my opinion. I had more energy and less headaches in the morning.

    All the best for next week, let us know how you get on.

    Sarah

    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
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #77915
    Re: POLL – Non-invasive Ventilation

    hi valerie & sarah

    like sarah has said the vents have gotten smaller, quieter over the years. ive had my vent for about 15 years and on my third machine. It made such a difference to my life that it never bothered me using it. My mum has noticed a big difference in the new machine as she can no longer hear it from her room. I cant hear the change as the air noise seems to be louder to me at the mask end, although the vent is quieter. think its just me ears..lol. I had bother sleeping after my first machine died as it was really loud but then it was one of the first designs in home ventillation. I miss my old machine I could fiddle with the setting if I had a cold, new ones all computerised.

    the masks have always been trouble for me. Sarah what do you use????
    My problem is Ive always had a small face/head and they have never really filled the gap between infant mask and adult set ups.
    I used the blue nasal pillow and soft black straps (adam) for about ten years then they changed the material and my nose and skin reacted badly to them. now use the puritan bennett breeze with the shallow mask that i have had to cutomise and add extra straps to keep in place.

    valerie .. your husband shouldn’t be bothered too much with nose although he may get a little draft from your out let hole on your tubbing or mask depending on the set up.. make sure you get a humidifier with your vent to prevent dry throat.

    take care

    cat

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77916
    Re: POLL – Non-invasive Ventilation

    Cat,

    I use a nasal mask and a soft cap headgear. This is the best for me comfort wise although it takes its toll on the bridge of my nose and messes my hair up :roll: To stop drafts and create a better seal I put a sticky towelling strip on the rubbery bit but have used spenco dermal pad, cotton wool and allsorts to find something that works. A friend told me she uses moleskin protection strips you can sut to size which I am going to try.

    I have tried other masks, like the one that goes up your nostrils but I didn’t like it. I got a humidifier to use with my Bi-pap earlier this year when I had a bad cold, it helped a lot along with a portaneb that can be used through the Bi-pap rather than the usual face mask that comes with it although you need a special connecting piece.

    I have never heard of the one you use, what’s it like?

    Sarah

    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
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #77917
    Re: POLL – Non-invasive Ventilation

    The Breeze is about the best of what ive tried so far. it comes with the mask in a range of both sizes and depths( i use the small shallow) it also comes in a nasal pillow design but the holes on the shell were too far apart for my nose.

    http://www.puritanbennett.com/prod/Product.aspx?S1=SPT&S2=CPI&id=233

    I like it as it dosn;t mess my hair too much. it looks as if it should be hard but the mask is soft & the head gear only needs to touch the back and top of your head and can be adjusted in a few angles. I’ve customised by adding a couple of extra straps to help with movement due to my small head size and I make strap pads out of tissues to go around the strap so that I dont get strap marks on my face.

    Ebay has cool vent accessories now and again, at the minute someones selling strap covers, hose clips to stop tubing pull and tubing covers in different colours. there is also a thng to stop mask rub on your nose but its a bit expensive at £20 but its one to ask the vent nurse for. the Ebay item is 320626032779 nose comfort pad.. you would be surprised what the vent nurses have if you just knew what to ask for.

    I going this week to the Lung muscle clinic, will let you knew what goodies I manage wangle out of the resp nurse. lol
    take care
    Cat

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77918
    Re: POLL – Non-invasive Ventilation

    I’ve used a bipap (NIPPY) for just over a year. Although I was devestated initially, now I love it and I can’t describe what a positive difference it has made to my life. No more morning headaches, not feeling so groggy all the time, no more night time ‘panic attacks’. It doesn’t bother my boyfriend at all, I think it sends him off to sleep! I use a mirage liberty face mask with nasal pillows. Have always found it very comfortable and dont get any of the sores that some people seem to get.

    skippy
    Participant
    Posts: 16
    Joined: 14/09/2010
    #77919
    Re: POLL – Non-invasive Ventilation

    I use a NIPPY1 for sleeping over night, and an Elisee in the day. Had a right royal 6 month fight to get the more up to date Elisee. I use it about 18-20 hours, not quite all day yet. I got nasal pillows, love them they are comfy n I get to talk lol! Mask at night, because i tend to breathe through my mouth at night, nice healthy dent in my forehead, but It don’t hurt a lot.

    ianAG
    Participant
    Posts: 2
    Joined: 29/11/2010
    #77920
    Re: POLL – Non-invasive Ventilation

    Hi,

    I have been on a BIBAP machine for 5 years now! im not saying it was an easy step as it wasnt. It took me year to build up from 3 hrs in day to 14 hrs starting at 7pm in evening till I get up in the morning. For me it was a cosmetic thing and the acceptance that my condition has progressed which was very hard to deal with. I sit in front room with a pillow mask when eating tea etc. I then use the triangle mask which covers my face but not my mouth. I have to wear dressings where the mask sits as it marks my face and the top of my nose! not good for my beauty lol.

    I was married at the time of starting on the BIBAP and I described myself as darth vadar :? when sleeping with my husband. Im not saying I felt good about it as I didnt I was worried what he would think about waking up and looking at me with this thing attached to me, but he wasnt bothered. He didnt always sleep well and once or twice a week he slept in room next door, but we both eventually got used to it. We had to I had no choice if I didnt use the BIBAP I was going to get very ill. Once I started it and realised that it was making me feel better I couldnt live without it now. I cant sleep without it now its like a comfort blanket!! No more headaches, no throwing up, no dropping off to sleep without being able to stop myself, and no lack of energy!! if i ever feel like that again i know the BIBAP needs tweaking :)

    HelenStar1980
    Participant
    Posts: 9
    Joined: 24/09/2010
    #77921
    Re: POLL – Non-invasive Ventilation

    I use bi-pap when I sleep and have done for 10 years now, but had a large machine to begin with and couldn’t carry it myself as it was quite heavy, but when I went for a sleep study last year told them how it stopped me travelling on my own and I had to rely on others to carry it, and they gave me a lighter model which is soooo much better, smaller and quieter! I went in March and they told me they didnt have the budget for a new one for me but luckily Steve at Royal Brompton found me one :) Only problem was I think someone had used it previously who smoked and it stunk! The casing itself and the power wire!!!!

    only problem I have is that when I had an operation to straighten my back, they put a seaweed patch on the bridge of my nose when they put me onto masked ventilation (before I used Bi-pap) so that it wouldn’t irritate my skin…. but I’m allergic to seaweed and green things as I told them before I went down for the operation, and when they took the patch off it took all the skin and some tissue off the bridge of my nose! My scar is a bit better but people thought I had been in an horrific car accident as my nose was right down to the bone and took ages to heal. Its healed over but its scar tissue and bright white, but goes red when its mega cold or mega hot, and due to it being so fragile, I have to be careful with masks as if any pressure goes on my scar, it gets damaged and sometimes starts bleeding. Luckily the managed to find a nasal mask that goes on the tip of my nose, but unfortunately they’re stopping making them and I got the last one earlier this year. I’m going to try the nasal prongs next, when I was first put on the bi-pap I was 13 and it really irritated my nose but now I’m a bit older and my nose is bigger lol I will try it as I really don’t want to mess up my scar with a mask pushing on it.

    The Royal Brompton even sent me to a plastic surgeon to see what they could do, but they can’t do anything as it may just made it worse or cause scaring elsewhere on my face!

    Really upset they no longer do the small nasal masks.

    I wish there was something that could be done too about making my hair all messy! My hairdresser wait to try and put a pair of tights over my head to keep my hair straight but that didn’t work. I just wake up with flat hair and lines where the mask was.

    I also find that I dribble soooo much using bi-pap! Before I never dribbled but I do when I have the bi-pap! Really odd lol

    srleigh
    Participant
    Posts: 10
    Joined: 30/11/2010
    #77922
    Re: POLL – Non-invasive Ventilation

    @srleigh wrote:

    I use bi-pap when I sleep and have done for 10 years now, but had a large machine to begin with and couldn’t carry it myself as it was quite heavy, but when I went for a sleep study last year told them how it stopped me travelling on my own and I had to rely on others to carry it, and they gave me a lighter model which is soooo much better, smaller and quieter! I went in March and they told me they didnt have the budget for a new one for me but luckily Steve at Royal Brompton found me one :) Only problem was I think someone had used it previously who smoked and it stunk! The casing itself and the power wire!!!! :D

    Good old Steve, he is a star!

    only problem I have is that when I had an operation to straighten my back, they put a seaweed patch on the bridge of my nose when they put me onto masked ventilation (before I used Bi-pap) so that it wouldn’t irritate my skin…. but I’m allergic to seaweed and green things as I told them before I went down for the operation, and when they took the patch off it took all the skin and some tissue off the bridge of my nose! My scar is a bit better but people thought I had been in an horrific car accident as my nose was right down to the bone and took ages to heal. Its healed over but its scar tissue and bright white, but goes red when its mega cold or mega hot, and due to it being so fragile, I have to be careful with masks as if any pressure goes on my scar, it gets damaged and sometimes starts bleeding. Luckily the managed to find a nasal mask that goes on the tip of my nose, but unfortunately they’re stopping making them and I got the last one earlier this year. I’m going to try the nasal prongs next, when I was first put on the bi-pap I was 13 and it really irritated my nose but now I’m a bit older and my nose is bigger lol I will try it as I really don’t want to mess up my scar with a mask pushing on it.

    The Royal Brompton even sent me to a plastic surgeon to see what they could do, but they can’t do anything as it may just made it worse or cause scaring elsewhere on my face!

    Really upset they no longer do the small nasal masks.

    I wish there was something that could be done too about making my hair all messy! My hairdresser wait to try and put a pair of tights over my head to keep my hair straight but that didn’t work. I just wake up with flat hair and lines where the mask was.

    Yes, it is a real pain, especially when I have just had it done nice. Dry shampoo is a godsend

    I also find that I dribble soooo much using bi-pap! Before I never dribbled but I do when I have the bi-pap! Really odd lol

    Funny you should mention that, woke up this morning and had dribbled everywhere :( yuk

    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
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #77923
    Re: POLL – Non-invasive Ventilation

    Ive had a dribble problem from the start with bi pap tried everything from chin traps from the vent nurses to bandages to keep my mouth shut. I think the humudifer makes it worse but its either dribbles or waking up with mouth glued together with ick.

    has anyone found that the vent has changed their teeth over the years??? My teeth have started to move forward over the past couple of years. tried nighttime mouth gards but dont get a good seal with them..

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77924
    Re: POLL – Non-invasive Ventilation

    Funny you should say about teeth! I had a brace when I was younger as my bottom jaw was out more than my top teeth. The brace worked but had to wear the bands to pull it into position, and then once it was removed had to wear retainers for a year. A year or so later my orthodontist said that they would put the braces on again as my teeth still wern’t meeting. I did say at that stage that it probably wouldn’t make any difference….. 1 1/2 years later it hadn’t helped! My teeth aren’t bad, my dentist was just very nice and said that he would try and sort it so my bite was inline and yes the brace did help a little and my chin doesn’t stick out like it did but I think that with the machine plus jaw muscles nothing would ever really fix it!

    Glad I’m not the only one with the dribble problem hehe. Its worse when I have a cold (as I do now :cry: ) If I ever go to hotels etc I always take my own pillow or put a towel over the pillow as I don’t want to ruin the pillows! I have a pillow protector on my own pillow so it doesn’t ruin it, just so annoying!

    srleigh
    Participant
    Posts: 10
    Joined: 30/11/2010
    #77925
    Re: POLL – Non-invasive Ventilation

    Well thanks ladies I don’t knowether to laugh or cry!!!!
    I’ve just been asked to be refered to the sleep clinic as I need a ventilator thing (bipap)
    I go paralysed at might and don’t breath propey anyways .
    You’ve made me feel so much better about it! NOT Lol! :cry:
    but I know I’m doing the right thing!

    Shellybear
    Participant
    Posts: 364
    Joined: 09/12/2010
    #77926
    Re: POLL – Non-invasive Ventilation

    Shellybear,

    I can honestly say that using Bi-pap is just an everyday thing for me now. It does take a bit of getting used to but there are some really good accessories now (makes it sound quite glamorous :) ), probably some I don’t even know about, to help with problems people experience as a result of using masks etc.

    Like you said, it’s the right thing to do and everyone I speak to who uses NIVhas commented on how better they feel. Good luck with the sleep study. I took my ipod with me for my last one to help me get off to sleep.

    Any questions, just ask.

    Best wishes,

    Sarah

    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
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #77927
    Re: POLL – Non-invasive Ventilation

    sorry shellybear if ive scared you. Ive been using my vent that long that (about 15 yrs) that I forget what its like not to have one. Mine has become a bit of a comfort blanket any time im poorly or upset I pop it on. I even have my last machine that I take on hospital appointments and if I have to visit family with stairs in their house.

    and about the drooling, My sister said that I snoored and talked in my sleep pre vent, In her oppinon the vent was less irritating. lol :lol:

    ohh and I second Sarahs Ipod idea. I took mine with a couple of movies and audio book loaded on. the last sleep study I went on I was the first to get hooked up at about 8ish.. rather early for sleepy time for me.

    I can honestly say the worst thing about my new vent is that its got a green glow. Ive got to cover it up.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77928
    Re: POLL – Non-invasive Ventilation

    Funny you should say about teeth!

    srleigh

    I think a brace is my next move as I have trouble eating as my teeth dont line up at the front, the dentist says that I will probably need to keep part if not all of the brace on forever. Im just not big on pain and my sister says it really hurt having her braces in and adjusted. :cry: just dont know if its worth all the pain, for not much improvment.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77929
    Re: POLL – Non-invasive Ventilation

    Hi
    Well I didn’t’ manage to get to my sleep over appointment, The roads were blocked with snow, ice, jack knifed lorries and broken down gritters.
    I am now waiting for a new appointment.
    I have persuadewd the husband to book into a rather nice guest house in Edinburgh when I get my next appointment so I will get a nice dinner before going to the sleep lab and can go to the guesthouse in the morning for a slap up breakfast.
    I may even use the shower with the fancy toiletries too.
    How much snow do you lot have.
    I an getting really pd off with it now Hardly been able to get out at all and when I dit manage to get the car off the the drive there was nowhere to park at the shops.Why do the council use the ‘disabled’ spaces to store 6ft heaps of snow? Only started to thaw and then another deluge earlier on in the week.
    Take care all
    Valerie

    ValerieB
    Participant
    Posts: 10
    Joined: 21/09/2010
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