Now I am using CPAP! Any advice appreciated

[Fleurbaby]

Sleep apnea test last night! CPAP machine given. Approximately 54odd stoppages an hour. Any extra advice, would be appreciated! Thanks

[Lucybird]

hmmm. I'm not sure I have any tips as such. It takes a bit of getting used to, but I find it hard to sleep without mine now (about a year later). I do find it dries my skin out a bit (especially my lips) so I put on lots of lip balm and some moisturiser before bed.

[micktheknife]

It will be the best thing you ever do, get with it and enjoy the feeling of being alive in the morning. You may also want to consider that once diagnosed if you don't use the machine. your driving license can be revoked.

I've been on a VPAP for over a year and my O2/CO2 levels are normalizing, and I sleep much deeper and soundly.

For someone with an underlying chronic lung condition, it is critical to accept this treatment as sleep apnoea puts a strain on an already strained cardio-respiratory system.

[Redrum46]

Have a chronic lung condion since a virris as a child had my macine about 12 years Don’t b without it all I can say if u find your. Mouth or noes gets dry thir is a water. Attachment that is good

[Exbury1905]

Fleuebaby, stick with the CPAP.

I was first diagnosed in 1999 and given a loaner CPAP to try...I could not tolerate it as it made me sneeze and my nose run like mad. So I went for ten years untreated until I was falling asleep soon after I got up, shaking and feeling dreadful. In Jan 2010, after it was suggested by my hypnotherapist that I had REM sleep disorder, I went for another sleep lab test and was given another loaner CPAP machine. After a week I bought my own and decided to sleep in the spare room until I was used to it, as I knew I'd be very restless and didn't want to keep my husband awake. It took three months before I felt comfortable enough to return to my own bed.

I still had problems, such as sneezing and runny nose, known as CPAP rhinitis. These symptoms were mainly caused by phthalates in the CPAP machine itself! At times I would have to stop using the CPAP for a while until the nasal symptoms had cleared up. I have recently purchased SO CLEAN CPAP cleaner available in UK from: soclean.com/uk

It is brilliant. I use it every 3 - 4 days to clean the CPAP machine, hose, mask and headgear. So far no more sneezing!

Good luck

[Fleurbaby in reply to Exbury1905]

Thank you, my main problems seem to be self fulfilling!

1claustrophobic with mask on (full face)

2/ can't keep nasal mask on, as when pressure builds up, my mouth pops open & it feels like my head is exploding!

3/move it from bedroom to lounge, hoping I can put it on before falling asleep, let's put it this way! I fall asleep so quickly, without warning, I usually awaken with my hot coffee or dinner spilt all over the floor, carpet etc.

4/ I am too scared, being on my own, to put it on! I have left hot water taps running, nearly set fire to my unit, by falling asleep, with everything on.

The list is becoming quite numerous! I don't know what to do!

Please everyone! I need help?

[Exbury1905 in reply to Fleurbaby]

Fleurbaby,

1. Check with your sleep doctor what pressure your CPAP machine is set at. It sounds as though it may be too high.

2. Do you know about the ramp setting? As far as I know all CPAP machines have this setting: let's say your normal pressure is set to 8 - you can have the ramp set at a lower pressure e.g. 7 so that you can get to sleep and it slowly increases to 8. Depending on your machine you may be able to set this yourself or have it set for you wherever you got the machine.

3. Try to learn to breath through your nose. I know this can be difficult. Start by closing your lips and put your tongue just between your teeth.

4. You've said you fall asleep so quickly without warning - this may be another issue altogether that you should talk about with your doctor/sleep doctor.

5. Before you put the mask on make sure that everything is safe. Then go to your bedroom, sit up in bed, put the mask on and connect your hose.

6. I can sympathise with you about the full face mask! After trying different nasal masks I now have the Respironics Wisp nasal mask

I hope this helps.

[Fleurbaby in reply to Exbury1905]

Thanks, it does, my pressure, l think, was initially set at 4 increasing to 15!

When I first contacted them about my problems, they talked me through ramping, it's now 6 to 15, my doctor said something about increasing it, but, not too sure, as I don't have the energy to keep debating everything!

I am soooo lethargic, fatigued, l just can't do anything.

[Exbury1905]

Hi Fleurbaby, 15 sounds very high! And 6 - 15 sounds too big a range to me...I don't use the ramp now - my pressure is set to 9 and if I want to use the ramp I can set it to 8. You should get it checked as it is very important.

I am concerned about what you said:

>I fall asleep so quickly, without warning, I usually awaken with my hot coffee or dinner spilt all over the floor, carpet etc. and 4/ I am too scared, being on my own, to put it on! I have left hot water taps running, nearly set fire to my unit, by falling asleep, with everything on.<

You really do need to talk to someone about this. I've seen some of your other posts and it's obvious that you have complex health issues. I hope that you can get some of them sorted out soon!

Thinking of you.

[Fleurbaby in reply to Exbury1905]

I agree, I have always thought that the range was too big! I was supposed to see my lung specialist every 3 months, I saw her initially about june/July then I think about Sept? Next appt. Should have been about 12 dec. But, she hasn't said anything to me since! I really feel like I am being prejudiced against, what else can I think? I have been in hospital at least twice since, once, in the respiratory ward! I was told she new I was there, but ...haven't seen her!

I don't know what to do!

[Exbury1905 in reply to Fleurbaby]

Demand to see her. And go back to the place you got your CPAP machine from. Take care and stand up for yourself!

[Fleurbaby in reply to Exbury1905]

Thanks

[Fleurbaby in reply to Fleurbaby]

Have just got a email from the hospital, appointment with respiratory team at the out clinic, Friday 14 June, my doctor referred me, I sent him a copy of my message on here the other day. It obviously worked.

[Exbury1905 in reply to Fleurbaby]

Yippee! Good luck and make sure you tell them everything so they know how serious this is. Don't let them fob you off. Take care.

[Exbury1905]

You are welcome. I know how difficult it can be and you really should be getting help about this. Take care.

[Exbury1905]

Hi Fleurbaby, I've been away for a while and didn't see any update from you after your appointment with the respiratory team on June 14. I've been wondering how it went...

[Fleurbaby in reply to Exbury1905]

Thanks, please check further up the list! I will also add to my post above, I am feeling really happy now, overall! Now, I know so much, I am confident I can get through this, specialist said my apnea is very, very serious! She couldn't emphasize enough. I have been using the CPAP most nights, but so far, I am only able to get 2/3 hours of sleep with it on! But, I will persevere, I did suffer from the sneezing etc, but stopped using it for a couple of days, nurse said to use the dehumidifier in the machine, it will moisten the airflow and stop the cold air from drying out my nose.

[Exbury1905 in reply to Fleurbaby]

Hi Fleurbaby, That's great! I am so relieved that something, finally, is being done to help you. Re the sneezing, a friend highly recommended So Clean - here's the Canadian link: soclean.com/en-ca/

I bought one and use it every 4 - 5 days...no more sneezing or runny nose! It is fairly expensive but I consider it worth it. It connects directly to your CPAP machine, the hose and whole mask go into the chamber. And it is much better than the humidifier as it's the phthlates IN the CPAP machine itself that are partly the cause of the sneezing (called CPAP rhinitis). Good luck and stick with it!

[Exbury1905 in reply to Fleurbaby]

Sorry to repeat the info about So Clean

[Fleurbaby]

Hi everyone, I am still getting replies to this posting, thanks! I went to see my respiratory nurse??? I have read all you guys talking about a nurse, but, all I was ever told was that I had an appointment with the specialist every 3 months! Until 3 weeks ago, I last saw her in September last year.

However, l saw both of them 3 weeks ago, and the specialist said my sleep apnea is at a very serious level! I am almost at 20?? The top apparently, I have to see the nurse at end of July I think!

Then the specialist again in 4/6 weeks, but, I am finally fully aware of my situation! FINALLY! My God, what a battle, but, I have called an end to hostilities now! My psychotic behavior is over! I am calm now and I can see how many people do care!

I really need an honest!!! Medical, professional assessment on my personal future? Should I be sorting out my affairs? Or, can I put up with the aches and pains, because, I have another 10 years or more? I know, no one can say with authority, but, my whole life before I got sick, was such a SHITHOLE OF A LIFE! I have honestly, (despite everything) had a better life in between the agony, than ever before!