British Snoring & Sleep Apnoea Association

well my nasal probs only started when i became NIPPY dependedent,so when i first told my original consultant,he could'nt understand why,but after a few visits to the ENT jokes in the coates,it was discided because of the severity of my disability,it would not be wise to operate,so i really have know choice but to use sprays unless i want a runny nose all day(yuk).

what kind of mask do you use mimi ? is it a full face one or a nasal mask ?.

I used the nasal mask for a while, but swapped to a full facial as I couldn't get on with the chin strap ... it just wasn't enough to stop my mouth dropping open during the night. I'm more comfortable with it, though I still hate it! When I first tried the full facial, I felt very "claustraphobic" and panicky, but persevered with it.

i've only ever used the nasal one,& the only trouble i get is when i turn from one side to the other,then the head straps work themselves loose & then the machine beeps like nobodies buisness,& i tend to dribble better than Ryan Giggs (footballer) occassionally.
NIGEL.

That made me laugh! Know what you mean about the dribbling ...

I wear a "hood" with my face mask ... seems to keep things more stable, rather than just straps (though it plays havac with what might be defined as my "hair style"!).

Hi mimi @ Uncle Arthur

Hi to you both well after 11 years of cpap I'm about to go throu drastic surgery to solve my apnea i hope. I'm fed up with all the coughs and colds i get all the time because my nose is always blocked i use nasal sprays and a nebulizer which is supposed to open my airways more it helps my asthma but not my nose after 11 years of cpap they have found that my septum at the back of my nose is deviated so they are going to correct that and hopefully repair my cleft palate but why they didnt find this back before they gave me the cpap i dont no i had all sort of tests including a mri scan of my face but all i got is theirs to much scar tissue so we cant do anything else from all the cleft surgery Oh and i use a full face mask from the begining because i dont breath throu my nose and have had all the problems with the very sore bridge of my nose but with the mask i use now it is finaly sorted

better go now

Tas

mimi,
i'm sorry to have to say this,but i don't get so called bad hair day's either,because i'm bald by choice,(not coz the NIPPY made me pull it out).

tas,
well,i can't undetstand either why these so called experts could'nt sort your problems out yrs ago & save all troubles,pains & inconviences.

i don't know when you go into hospital tas,but hopefully you get the results you are looking for,& be able to do away with your machine,let us know tas how you get on.
NIGEL.

Hi I went back to Papworth with my nippy 3 and was told that the next stage would be to add oxygen to it meaning that I would have to use the machine plus and oxygen cylinder I have no problem with the mask sleep now 7 hours on the machine wake up tired out take off the machine and go back to sleep for another 3hours its a good job I dont work I sleep most of the time. Can not find anyone else with a nippy 3 but there must be some users out there. Returning to Papworth on Thursday when I have to decide whether to try oxygen. do either of you know what your percentage triggered breath rate is? Found this in the menu of the machine but have no idea whether it should be high or low?
Mary

hi Mary,
sorry to hear your still having problems getting used to your NIPPY 3,after persevering for so long without any joy,but i think that thursday's visit to papworth could be very beneficial,espeically if they've talked you into keeping it.

Mary have you tried the oxyen cylinder before ? & do you get to ask the consutant any questions ? if so don't be afraid to ask the so called obvious ones i.e is it ever going to work,when should i feel the benefits,all these type of questions no matter what the answers may be or however busy he might seem,ask anyway.

Hi
I have had to go on to oxygen twice whilst in Papworth both times they switched me on to oxygen whilst I was asleep presumable because the Nippy 3 wasnt working ok must say felt ok next day but Consultant feels that this is the last step if I have to use oxygen as well. Do you have oxygen with your nippy 2 does any one know the percentage triggered breath rate (cant ask this because being a fiddler in managed to unlock the menu to see what was on there gives you things like hours used percentage triggered breaths ect) Must say I keep my mask on ok sleep all night beeps on occassions I think it is when my breathing becomes shallow just does it one sharp bleep to get me going! But tireder than ever my husband says I am now as bad as I was when I first had my stroke and heart surgery 4 years ago so really dont see the point of it only persevering so that when I go on Thursday I can say there you are 7 hours a night on the machine for 7 weeks and look at me now a wreck!

hi Mary,
i'm afraid i can't help you with the percentage thingy,i've never asked.

i'm not an oxygen user either,but,i would suggest that when you return to papworth on Thursday,you tel them about the beeping,perhaps your machine is falty.

the other thing Mary,if it is suggest you use oxygen with your NIPPY 3 every night,is that such a bad thing ? especially if it makes you feel better.

Hi uncle Arthur

I'm going into hospital for my operation next tuesday 18th but im getting cold feet at the moment although the surgery will help my apnea and general health it will make my speech really bad it has taken years for me to get almost normal speech just sound now like ive got a perminate cold because i was born with a cleft palate but after the surgery i will sound like im speaking down my nose all the time so ive got to way up the pro's and con's do i jepardise my speech for better health and less medications all the time or put up with medications and sleep apnea and general bad health I really stuck dont no what to do Ive got to go tomorrow thursday for pre op tests so im going to ask lots of questions

hope to hear from you soon

Tas

hi Tas,
sorry to hear about your problems,& i can understand your doubts,i would'nt like to have to make those decisions.

when i started my NIPPY 2 treatment Tas,my nasal passages started blocking,which i've been prescribed a spray for,but that was only because my disability would not allow an operation,so the decision was taken out of my hands thankfully.

Hi
thought you might like to know went to Papworth on Thursday and now no longer using my nippy but I am going on to a pure oxygen treatment which I will receive overnight via 2 nasal prongs it seems that I will continue to breath without a machine but the oxygen is added. I am going to start next week once the equipment arrives have to try it for 3months, if I can keep going that long. My apnoea seems to be central rather than obstructive and the Nippy is no help in that situation. Has anyone else tried this? Never really got to try it very well as I was in a bed next to a lady who snored constantly even though she was on a nippy and added oxygen! It will be interesting to see if it works.

Mary

hi Mary,
well at least they've tried something else now,& in three months time u should feel some sort of benefit (hopefully),it just a crying shame these people could'nt tell you that you did'nt need the NIPPY in the begging,rather than letting it go on & on.

Hi
I believe in central sleep apnoea the nippy occassionally works so I suppose the thought they would try it. I gather with central it is very much of a hit and miss treatment as there is no definate cure or treatment they just have to find something which will stimulate the brain into deciding to keep breathing at night when it just deicides to shut down as you are not doing anything apart from breathing!
Mary