New user to CPAP

[Nottslass]

Hiya, im new here please be gentle with me.

Thursday night hospital tried with me a machine worked brilliant kept the nose mask on all nite, had to take machine back yesterday so they could work out how much air i needed, hospital gave me a different machine to bring home, i tried it last nite felt like i couldnt breathe out properly felt like i was going to pass out went all light headed and sicky bloated feeling, took nose mask off after an hour , i still feel yukky this morning, so didnt get much sleep last nite, Went back to bed earlier as im soo tired tried machine again that only lasted for 10 mins with mask.

I dont want to use it tonight if thats how it make me feel. Is this a normal side effect from machine.

thanks for reading
Ange

[ElleCee]

Hi Ange,
Welcome to the site.
So that we can help, what machine are you using?

Lorraine

[Nottslass]

Hiya machine is resmed escape II..i had the ramp set to 5 mins.

thanks

[ElleCee]

Hi again Ange,
You can change your ramp time yourself as you don't need to get in to the phycians menu to make the adjustment. (I have the same machine) Adjust it to 20 or 30 mins and make sure the EPR is set at maximum.

Good luck
Lorraine

[Nottslass]

Thanks Lorraine,

I will change the ramp time they showed me how to do that yesterday. How do i set EPR to maximum?? didnt get a user guide with machine.

Oh i Just looked on menu all i can do is change the ramp, used hrs, usage, language, Dont think the nurse has set it it up for me to change EPR.

Will give machine a try tonight, if i feel like i did last night, will give hospital a ring monday morning see if they can help.

Thanks again

[Tigers Fan]

How many mor times?

Hi Nottslass

Welcome to the club!

They give you an APAP the first night to find out what pressure you need - folk get on great with them. Then they have to take it back and are given a CPAP in its place - lots and lots of folk hae them, get much the result you did.

Bad news is - you're probably stuck with a CPAP. Good news is - you'll probably get used to it, lke very nearly all of us have.

Try wearing your mask whilst watching TV or doing whatever, during the day. How long have yoyuu managed at one go so far? Start there - do it again, then try for a few minutes longer each time. If you feel the panic rising, just make the mask leak so you can breathe atmospheric air so you know you won't suffocate - may help wththe panics, knowing how to 'save youself'.

Stick with it - the benefits in quality of life are huge!

TF

[James @ Intus]

Indeed, as they are cheaper, they take the Auto back and hand you a fixed pressure machine. They work just fine but aren't so clever. Like Marmite, some indeed dislike them with a passion. You can beg for the Auto-CPAP back or save up buy an Auto-CPAP yourself.

The ramp settings and EPR (exhalation pressure relief) function can go a long way to make things on this machine more comfortable. They should be able to accommodate that for you.

[Nottslass]

thanks for replies, sorry not been about much as im just sooo tired,

have tried machine for last couple of nights with the ramp on 30mins fell alseep ok as soon as ramp finished its waking me up as thou i cant breathe, i take mask off and cant go back to sleep as my chest hurts, feel sicky dizzy and windy, i have also got a werid metal taste in my mouth, just rang hospital got appointment for this afternoon.

thanks again
Ange

[Pedallass]

Also a Newbie and also having problems

I am also a new user and having problems. I think the worst thing is that all the information you get before diagnosis, and at the clinic (or at least at mine) is that CPAP will solve all your problems. I was so so unprepared for the terrible nights I am having- the whole thing is feeling like a nightmare. And now I feel all caught up in it because of the driving issue- if I dont persevere with CPAP will I be banned from driving?

The night in the hospital trying out the mask (a week ago) was awful- my nose hurt like crazy, I felt claustrophobic and in the morning had to get a sick bowl because I thought I was going to vomit. I had a horrible headache. This is most unlike me - although I wake feeling tired, I feel well. The machine felt like some prison warder and I couldnt even get it out of my bag on the first night home, it flet like a menacing enemy sitting in the corner of my room. - decided not to use it that night and then have had a couple of nights doing 3 hours. Last night I managed to keep it on all night but am sleeping so badly. I wake up all the time. Feel very very tired, and really grumpy. It feels like a life sentence right now. What it seems to me is that there is one group of people saying CPAP is great and they never had any problems with the machine- their life has changed and they have lots of energy. Then there seem to be people struggling- I have now read that about half of people never cope with CPAP- why wasnt I told that before? I want to hear from someone that had the same problems as me but manages to cope with it. I really could do with some support. This forum seems great. Thanks

[Nottslass]

Just got back from hospital, i explained how the machine was making me feel unwell.
Nurse said i have 2 options either he can take the pressure down with the machine or i jack it all in and call it day and wait for my follow up appointment and see if there anything else they could try.
Was shocked at second bit he said, as im willing to give it a try for longer, 3 days isnt really much time to get used to something new. I just explained that the first machine on thursday was far better than this one and would it be possible to try an auto one, he said they dont usually give out auto machines but in the end he gave me a resmed autoset ii, im hoping it works better and i finally get some sleep, not slept properly since friday im like a walking zombie

Pasallass....i didnt get much info about CPAP from clinic just a bag with a machine in and nurse showing me how to turn it on and off etc nothing about side effects or how it would feel like, i have learnt alot more reading this forum, Hope things improve for you.

[Tigers Fan]

Double well done!!

Hi Nottslass

Well done for sticking with it and well done for getting yourself an APAP. Let's see how you go now. There are more adjustments to make with an APAP over a CPAP but it's a fine instrument compared to the bludgeon of a CPAP.

As your clinician seems less than sympathetic and thus, perhaps, not the best place to go - you always have us to guide you!

TF

[Tigers Fan]

Hi Pedallass

Welcome to the forum.

It's always better to start your own thread than jump in on someone else's - that way you don't get the replies mixed up and you get answers specific to you. It's also forum etiquette.

If you have a diagnosis of OSA you are obliged by law to inform th DVLA. If you are not being successfully treated for it, you must surrender your licence. it is essential, then, to get treatment quickly and stick with it till successful.

I have no statistics, but based on this forum, most people succeed with CPAP - very few don't. For them, there are alternative treatments.

You just gotta make friends with your mask! It's always worth wearing it during the day o get used to it -first without pressure and then with as you adjust.

Your nose hurting tells us that you most probably had the straps too tight. Loose is best - just tight enough to stop any leak when you are laying down and then 2mm tighter.

There are any number of threads started by people in exactly your situation and they very nearly all find their way. We end up feeling insecure if we try to sleep without the mask!!

Good luck.

TF

[SteveB]

The Joy of Exhaling

Hi

I started 14 years ago and the machines were very basic then, after the first night I knew it was for me, it was the best 4 hours sleep I had had in 20 years, BUT exhaling was such a challenge, I felt I had to overcome the machine to breathe out, but I knew it was something I had to do, so I laid there waiting for sleep, and I would consciously tell myself to breathe in and out until I fell asleep, and after a few weeks it became natural. A couple of times in the first couple of months I nearly gave up, but I stuck it out and within 3 months I could not imagine living without it, indeed I have only slept 1 night without it, and that terrified me.

I would suggest you try things out for yourself, different masks, headgear and so on, which will probably mean buying it for yourself; the staff at the clinics see OSA as an academic exercise, and they can only spply you with equipment in a narrow range, my clinic are giving out nasal masks at the moment that look like they have been made by Blue Peter viewers out of a Fairy Liquid bottle, so I buy my own at about £30 each. You have to live with the condition, to know what is right for your own needs, but it is a very personal setup, what is good for one person is not necessarily right for someone else.

One inexpensive option would be to join the Sleep Apnoea Trust (SAT) on http://www.sleep-apnoea-trust.org/ it only costs about £10 per year and they have local support groups, so you can get advice on the phone from a fellow sufferer.

Best of luck

[shuckie]

Hi!

Hello both of you and welcome to the forums!

Nottslass - I hope you've been getting on better with your APAP over the past few nights since your last post. Would you mind giving us an update please? I would have replied sooner but I've been feeling very tired over the past few days, something I'll moan about in a different thread lol!

If you're still having problems breathing out with the APAP - or if they want to put you back on the CPAP in the future - insist that the technician enables EPR and allows you to wear the mask for a few minutes in the clinic to check if you can breathe OK at that setting. If not ask them to adjust the EPR level until it is comfortable.

You might also want to discuss slightly increasing your initial ramp pressure with the technician as a pressure which is too low can feel suffocating (well, it did for me). I was very naughty and did this myself having figured out how to access the clinical menu on my CPAP. It's also possible to use the clinical menu to configure the maximum ramp time which can be set by the patient in addition to the EPR settings, but needless to say you really shouldn't do this unless you know what you're doing.... I mean you're a sleep technician

Pedallass - I'm sorry to hear you had such a negative initial experience with your treatment. To be honest I think most people need time to adjust to the treatment, and some people need more time than others.

For your own sake, please try to change how you think and feel about the CPAP therapy. Yes, the mask can feel like an enemy at first, however it's worth bearing in mind that it's there to help you, not attack you. On the one hand it isn't a pleasant thought realising that you may need to wear a mask at night for the rest of your life, but at the same time many of us are relieved to finally know why we feel shattered after a "good" night's sleep, why our memories seem poor, why we struggle to concentrate and stay awake during the day etc. Once you've adjusted to the therapy you'll probably decide that becoming a Darth Vader lookalike is a small sacrifice to make for a good night's sleep!

With regards to driving, you won't necessarily lose your licence straight away but you do need to inform the DVLA as soon as possible. I downloaded the medical questionnaire from http://www.direct.gov.uk/en/Motoring...lA-Z/DG_185769 and sent it after I was diagnosed, just before I started CPAP therapy. The DVLA recently wrote back asking me to complete and return another copy of the questionnaire within 21 days so they can assess my compliance before deciding whether or not to revoke my licence. If I don't respond within 21 days they will revoke my licence anyway.

You may be tempted not to tell the DVLA about your sleep apnoea, however you risk a £1000 fine if you don't inform them, and your hospital/GP/consultant/whoever may notify the DVLA themselves (and the DVLA may then ask why you haven't notified them). None of this is a pleasant prospect, but neither is the thought of nodding off at the wheel and killing/injuring yourself and/or other road users.

Please try to persevere with the treatment as best you can and remember that other forum members are here to help should you need any advice or support.


Kind regards

shuckie

[Gillyflowe]

Did you go to QMC treatment centre or City hosptial? I went to the QMC and must admit the info wasn't great. Wasn't given and auto machine the first night - just the CPAP which I kep after going the next day for checks. Had problems with pressure sore on nose but now got bigger mask. Don't give up - try to read the positive posts.