Is this good or bad ?

[martin]

i belong to the ..as long as i wake up alive i don't care..i accept that i don't do this with lots of other stuff but i try to be happy...ish



em..if i dont post further on this site then this was really bad advice

[Sparticus]

i belong to the ..as long as i wake up alive i don't care..i accept that i don't do this with lots of other stuff but i try to be happy...ish



em..if i dont post further on this site then this was really bad advice

Are you still there Martin

Yes I too was like that couldnt understand what the fuss was about but now I do

[Kushty]

wish i got results like that ! There are hardly any peaks or troughs.
Mine are still all over the place - I wake every 1 1/2 hrs because the mask is blowing off my face and i cannot breath against it. The irony is that, before starting treatment i could never remember waking up. I have never seen a prescription for CPAP , should i have ? I would like to know why my machine is on the default settings. I have not had an over night sleep study , unless the pulse oximeter they put on my wrist is the same thing ?
I am rapidly loosing patience with this bloody machine !
Sorry for the rant.

[Fredxx]

I know it may not feel this way, but waking every 1 1/2 hours is probably not as bad as you are thinking. We get sleep in cycles of about 90 mins, so you are probably getting full sleep cycles, which is the most important thing.

Just a thought - you may be doing something at the end of the sleep cycle (rolling onto your side, shaking your head etc) which is causing the mask to get dislodged. During the deep sleep sections you wouldn't be moving much. It might be that you need to think about the pillow you are using, and get a memory foam one or a CPAP one to help you not dislodge the mask.

[Barely Awake]

wish i got results like that ! There are hardly any peaks or troughs.
Mine are still all over the place - I wake every 1 1/2 hrs because the mask is blowing off my face and i cannot breath against it. The irony is that, before starting treatment i could never remember waking up. I have never seen a prescription for CPAP , should i have ? I would like to know why my machine is on the default settings. I have not had an over night sleep study , unless the pulse oximeter they put on my wrist is the same thing ?
I am rapidly loosing patience with this bloody machine !
Sorry for the rant.

Don't be sorry, we have all been in your shoes.
It may not seem like it but it does get better, it just takes a little longer with some than others.
It might help others to help you if you write as if for someone that has never heard of CPAP, your machine or your symptoms - example - what do you mean when you say you can't breathe against it? Do you mean exhale against the pressure from the machine?
Has your machine got a flex/EPR setting that relives the pressure when you breathe out?

[Sparticus]

My readings are like that solely because of the lads and lasses on here. it use to drive me daft when TF would prattle on about trying to get his AHI down another point then other peeps would come on and a whole debate would start that I was completely ignorant of. I was still just trying to figure it all out and like you my readings looked like it was bouncing on a richter scale while bombs were going off.




We all start out like this and eventually it sorts it self out, once you have aquired the knowledge, just keep reading and reading. You will get there in the end

[Kushty]

Thanks fo rthe reply Barely Awake, the machine i have is - Philips Respironics
System One 551P
RemStar Auto with A-Flex
Mode: APAP 4-20cmH2O
I do have COPD aswell as OSA and yes i find it difficult to exhale against the pressure when it climbs above 16. I have been turning the machine off and starting over when this happends.
Yes i believe there is a flex setting but have no idea how to alter this. When they checked for leaks at the hospital the machine was only running at 4cm but when it goes up to 12 and above the slighest movement
eg, licking my lips causes leaks. The mask i think is just a generic one ,i did read on the phillips site that their masks are numbered but i cannot see any numbers on mine.
I have been using CPAP since 10th Jan but i don`t feel any improvement.

[Barely Awake]

Yours looks like a top machine in my book. No matter how good though any CPAP machine needs to set up for your requirements by your clinic.

[Sparticus]

Yours looks like a top machine in my book. No matter how good though any CPAP machine needs to set up for your requirements by your clinic.

or by someone with good knowledge

[Barely Awake]

or by someone with good knowledge

It isn't that simple for me, I don't let anyone but an authorised dealer work on our car, I'm not going to put my health, driving license, and an expensive CPAP machine in the hands of advice from someone I know nothing about over simply asking the clinic. We are not experts even in our own health, after all.

[Sparticus]

It isn't that simple for me, I don't let anyone but an authorised dealer work on our car, I'm not going to put my health, driving license, and an expensive CPAP machine in the hands of advice from someone I know nothing about over simply asking the clinic. We are not experts even in our own health, after all.

I still disagree, I do understand where your comming from but for me its a 100 mile round trip to go to a clinic for then to push 2 buttons to up my pressure. I will go to see my clinic this August which will be 18 months since my last visit. They will check the data and say is everything ok, which I will probably say fine and they will probably say come back in 18 months. There will be no discussion about leaks about AHI, flow rates nothing. Now if this equipment was cheap and I say this hand on heart I would rather visit TF every year than see my clinic. You may laugh or shake your head but we know far more than what the clinics do. I tried once to discuss my data and all I got was 30 minutes of my doctor trying to convince me that I dont need to know whats happening and all these forums are dangerous!!!

I beg to differ and I refuse to put my life in the hands of a doctor who wont discuss, just dismiss.

[Fredxx]

It isn't that simple for me, I don't let anyone but an authorised dealer work on our car, I'm not going to put my health, driving license, and an expensive CPAP machine in the hands of advice from someone I know nothing about over simply asking the clinic. We are not experts even in our own health, after all.

I think going to an authorised dealer to check the tire pressures, top up the screen wash, check the oil levels etc, even to get a new set of tires, may be overkill...

And whilst we may not be "experts in our own health" neither is a medical professional; even the General Medical Council promotes the fact that we, as patients, need to take an active part in managing our own healthcare, particularly any long term conditions. Many sleep clinics tend to ignore this advice.


The following is from the General Medical Council Guidance on Good Practice

Good Medical Practice: Supporting self care
4. You should encourage patients and the public to take an interest in their health and to take action to improve and maintain it.

Good Medical Practice: Doctor patient partnership
20. Relationships based on openness, trust and good communication will enable you to work in partnership with your patients to address their individual needs.
21. To fulfil your role in the doctor-patient partnership you must:
a. be polite, considerate and honest
b. treat patients with dignity
c. treat each patient as an individual
d. respect patients’ privacy and right to confidentiality
e. support patients in caring for themselves to improve and maintain their health
f. encourage patients who have knowledge about their condition to use this when they are making decisions about their care.

To go back to the car analogy, imagine your car develops a really annoying rattle and pulls to the left. When you tell them in the authorised dealer, you expect them to take an interest in it and work to resolve it. If they just hand it back to you and say it's fine despite all the evidence to the contrary, do you take them at their word? or would you look for more help!

[Barely Awake]

hang on chaps... we weren't talking about suggesting to someone on here to change their filters regularly or some other tip like checking the hose for leaks and cleaning everything properly. Nor about patients taking an interest in their health. We were talking about setting a machine up from scratch, and in this case an APAP. Using the car analogy, you have in a newbie someone that doesn't drive and has never seen a car before. For me it is better the clinic or commercial outfit to set it up, is all I was saying.
Can I go back to watching the rugby now?

[Sparticus]

hang on chaps... we weren't talking about suggesting to someone on here to change their filters regularly or some other tip like checking the hose for leaks and cleaning everything properly. Nor about patients taking an interest in their health. We were talking about setting a machine up from scratch, and in this case an APAP. Using the car analogy, you have in a newbie someone that doesn't drive and has never seen a car before. For me it is better the clinic or commercial outfit to set it up, is all I was saying.
Can I go back to watching the rugby now?

who won

Ok, if we are saying a newbie with no knowledge and an APAP machine, then there is no argument. It has to be the clinic! As I said, it took me 2 years to get where I am and not too long ago I was shouting at anyone who change and messed with their settings but a doctor saying everthing is fine, is just not good enough.

Do you watch the movie or just watch the trailer?