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Re: New CPAP machine……HELP Needed!!..
Glad you had a ok(ish) night.
you will find your first nights sleeps for a week or so are short sleeps but quality ones.
Do you have telly in your room? try fitting in a cat nap/rest hour in the afternoon to recharge even if you dont sleep just kick back with the vent and watch some telly. this is the best time to fiddle with mask when your not tired.
have a look at our Non-invasive Ventilation thread. its worth a read
Re: New CPAP machine……HELP Needed!!..It gets better and better, last night was an even better experience.
Only woke twice and got back to sleep so much quicker than I expected. Just like
Cat I have all sorts of entertainment stuff by the bed for these periods but I was straight off
to sleep again.Cannot believe I have got used to the mask so quickly and that how easily you and the machine
start breathing together. I keep thinking the machine has broken but checking the screen you can see
the output is still there at the required level. Rhis is too good, today I feel bright and cheerful
again.Thanks for all advice and making me stick at it.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: New CPAP machine……HELP Needed!!..True – when I first got it (although I was a bit dead by then but same principle) at first a lay for hours trying out every go to sleep App I could find. Then I started going to sleep within minutes of putting it on – but apparently that was because I got over ventilated and had passed out!! Now it seems a bit more normal – like maybe 30 mins thinking ‘must sleep’ and then only waking if morning has come or a pain has crept in.
It’s funny how you just ‘feel’ when it’s right for you. I know very quickly now if the air wasn’t perfect or getting in me properly :-).
I hope each night it gets to feel better and better… if I have a pain free night I don’t even know it’s on! I try to scratch my nose in a half dazed state only to find my finger hits my mask followed by an ouch lol.
Re: New CPAP machine……HELP Needed!!..Cat say they upgrade the machine.
Excellent, it will get even better.
@criptic wrote:
It’s funny how you just ‘feel’ when it’s right for you. I know very quickly now if the air wasn’t perfect or getting in me properly :-).
I don’t even know it’s on! I try to scratch my nose in a half dazed state .Another good night has followed, just as you say it “feels right” and is somehow magically
in synch with your body’s rythyms and respiration.The funny thing at six this morning I woke with an itchy nose just as you say. I reached under the
mask, breaking the seal and all the night one problems were there with the rushing air and noise. But ten
seconds later and I was back in postion and fine.The only problem, I could not see the clock but that has been easily rectified.
What a great advert this is for the forum :-
I had this new machine from the medico’s that was so horrible and foreign to me, I
could cheerfully have thrown it in the River. Within a day four people on the forum were
giving me expert help and guiding me through a process that enhances my life
greatly.MANY THANKS !!
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: New CPAP machine……HELP Needed!!..This machine is superb.
A week later and I am competely used to it. Now I wake a maximum of
once a night and even then do not lie awake for hours. What a difference.I can just feel as my breathing slows down to the point where some sort of sleep
apnoeia would kick on and startle me awake again. Now this machine seems to
detect the pressure difference and keep me breathing deeply enough to
get to sleep normally.Cannot believe how foreign it seemed on those first two days.
Thanks for getting me to stick with it.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: New CPAP machine……HELP Needed!!..I have not had to go down the vent route yet, but when I do, I will have faith to stick with it. I am almost jealous of your sleepy sleep sleep, lol.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: New CPAP machine……HELP Needed!!..I think that the doctors probably suggested you lay on your side, not back as there is less pressure on the diaphragm from the internal organs when you are on your side. This is more relevant if you are overweight I think.
I also don’t get on well with the nose only mask. The air just flows into the back of my mouth rather than down into my lungs, probably from having floppy structures around my throat.
MichaelRe: New CPAP machine……HELP Needed!!..@michaelmcd20 wrote:
I think that the doctors probably suggested you lay on your side, not back as there is less pressure on the diaphragm from the internal organs when you are on your side. This is more relevant if you are overweight I think.
MichaelThis does makes sense, even with me being underweight. medico didnt go into it. Thanks.
@michaelmcd20 wrote:
The air just flows into the back of my mouth rather than down into my lungs, probably from having floppy structures around my throat. Michael
Yes, very similar. Weird isn’t it. The speech and language people found muscle problems in my throat previously so it fits.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: New CPAP machine……HELP Needed!!..Hi Taungfox
Just wanted to say great news that you have got accustomed to the vent so easily. This is why this forum is so good as users can give there thoughts and ideas with tips that the medics would not give.
Getting used to NIV is a learning curve but worth it for the benefits.
Hope it continues to go well for you.
Best wishes
GillRe: New CPAP machine……HELP Needed!!..A big thank you to all the members who gave me the help and encouragement to stick with this.
Two months on this has worked out to be a massive success.
After two days I wanted to chuck the whole thing in the river but rapid and numerous pieces of
advice solved all the problems.Within a few days the machine was fitting completely in with my breathing rhytyms.Where I used
to lie awake for hoiurs every night as my brething became shallower, the CPAP just fills the void and
suddenly I was getting of to sleep normally.Strangely I used to wake up once every night at about five O’Clock but was able to go back to sleep
again. Now eight weeks down the road three times this week I have had three nights of completely full normal
sleep. Years of disturbed nights seem to be over.?So, the difficult starting period is hard but stick with it the benefits are well worth it.
One slight downside, is that some people say you are more refreshed the next day. Have not noticed
this to any great degree. But I feel I am in a period where muscles are being progressively
weakened, so that might explain that.Do others have a blast of new energy after using CPAP.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: New CPAP machine……HELP Needed!!..Hi,
I’ve been using the BIPAP machine for about 2 years. I stuggle a lot with fatigue and migraine as well as muscle weakness. When I first started using BIPAP I hoped it would help with these problems but I don’t think it has. It is difficult to judge as I use it every night so I don’t know how much worse I would be without it. I think I probably would be worse if I didn’t use it at all.
So all in all I didn’t get a “blast of new energy” but I’m sure I would be worse without BIPAP. As with you I think my problems are down to the progressive muscle weakness and a genetic tendancy towards migraine and the BIPAP can only do so much. My father gets migraine but doesn’t have muscle disease.
Regards,
MichaelRe: New CPAP machine……HELP Needed!!..When I had my machine the nurse said i’d get stronger and feel refreshed but I’ve never felt any more energised – just that my blood gases are more normal and my head is clearer and of course not as ‘sleepy’. However in terms of strength and power and energy – never had and improvement on that myself. Stamina is no different neither!! It’s just keeping me alive to wobble another day lol.
I too wondered if that was a bit of a myth?
Re: New CPAP machine……HELP Needed!!..@criptic wrote:
I too wondered if that was a bit of a myth?
Thanks very much the input Michale and Louise.
It does seem then that this is a bit of a myth for MD people or wishful thingking at
least.Maybe as in our case it is the muscles involved in breathing that are e
affected it is not possible to get that kind of big improvement.I am just glad the thing is getting me off to sleep and I am not counting the spammers on Talk ND at three
and four in the morning.Every bit of progress is vital with any progressive disease.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: New CPAP machine……HELP Needed!!..HI
I use BIPAP and have done now for 2.5 yrs. I noticed a great initial benefit but feels that has become less over time. I still wake up regularly during the night. I wasnt full of energy but just more refreshed in the am. Now I am going backwords with daytime sleepiness and now not so unrefreshed in the am. The resp team are leaving things be as my daytime gases are ok. Off for my review appt with the vent team this week so will mention this then and see what happens.
They did mention giving me medication to keep me awake during the day…have mixed feelings about that as I didnt like what I read about it.I dont think we are meant to see a huge improvement in muscle strength with NIV but I am sure it must be helping our resp muscles. NIV is said to reduce hosp adms with chest infections etc.
Any help with these conditions I will take as I am sure you all will
Best wishes
GillRe: New CPAP machine……HELP Needed!!..@miracle77 wrote:
HII dont think we are meant to see a huge improvement in muscle strength with NIV but I am sure it must be helping our resp muscles. NIV is said to reduce hosp adms with chest infections etc.
Any help with these conditions I will take as I am sure you all willBest wishes
GillThis all sounds very good sense and very encouraging Gill.
We must be grateful for any help as these respiratory muscles get weaker.
You are right, I can feel this wonderful machine just “stepping into the breach” as my
breathing patterns subside. It is churlish of me to expect to energy boost that non MD
people seem to get. It is just great that it helps the muscles that are so important in
our respiration."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: New CPAP machine……HELP Needed!!..Well I have had my NIV review. No change to my settings as my blood gases appear to be ok. My machine has been alarming a lot lately so we have replaced it. Now have a Nippy3 +, supposed to be the same but it is heavier but better. I am now less sleepy, wakening less at night, it isnt alarming and the air seems less forceful as it comes through the mask. All in All I am happy. Vent team have agreed to me getting a humidifier to get rid of the blasted sinus issues associated with the vent. I suspect now the previous vent was working but not as well as it might have done hence my improvement since it was changed.
Gill
Re: New CPAP machine……HELP Needed!!..Sounds like a good review, things worked and you get a good nights sleep, bravo
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: New CPAP machine……HELP Needed!!..Just had the three month review of the wonderful CPAP machine that started this
thread. Thanks again to the people whose advice on the forum turned it from
a nightmare to a necessity.With the little SD card they can see exactly how you have used it for every minute of
the last three months. Thus they are able to tweak the machine a bit so that it can help
you all the more. In my case they also worked out that air was escaping from my mouth too
much and they have switched me to one of the very fullest facemasks.Too make the point they told me they have either sixteen or sixty different facemasks. Hearing
letting me down there but even if it is sixteen that is an amazing array of options. They
even have several different machines if necassary.Even after one day, things seem better and new mask more comfortable.
"Even if you are not paranoid, it does not mean they are not out to get you!".
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