First few days (or rather, nights)

[Nukkamtti]

I managed my first night with the mask on all night last night. I was in bed for 12 hours, asleep for over 11 of them, maybe 11 and a half. i sill was up at the loo four or five times and woke up about 10 other times that I know of, as usual in the middle of dreams though with one or two occasions because I was gulping air in my mouth. On all these occasions I went straight back to sleep. So (gulping air in mouth aside) it was exactly like a night from a fortnight ago except now I was wearing a mask.

The hope is that I do not feel sleepy after a few hours, and exhausted after eight, today and that I get down to nine or ten hours sleep.

[Tigers Fan]

That all says to me that your set pressure is nowhere near high enough - unless someone put a pea under the mattress, of course. But that would be perverse!

TF

[Nukkamtti]

The nurse did say she was kind of guessing the pressure. - hardly slept the night they tested the mask as I was in a ward,
With a lot of noise and a new bed and mask etc.

Lol re "pea". - I'll check tonight

[symmit]

The nurse did say she was kind of guessing the pressure. t

Hmmm - is this standard NHS practice - mask on and pick a number at random?

My minimum is now set at 8, if it had been there at the first night I reckon I'd have hated it.

Nukkamtti - I hope you're feeding back your experiences to your clinic!

[Tigers Fan]

Jeez! I'm defending them!!

There is a huge difference between an educated guess and picking at random. Initial CPAP pressure is not an exact science, as you will know if ever you try chasing your own stats. Even when you find the 'perfect pressure' it's only for a while, then you lose or gain weight, get a sniffle, the weather changes, etc, etc.

All that said, they often make an educated guess based on non-sense - collar size, are you still snoring?, 10 because it is popular, 8 because it is lower.

The bit that gets me is that they moan when you make adjustments yourself. Nurse Pate threatened me with exploding lungs at my last annual review and not being able to seek compensation if they did. Now why would thgat be, Pate?

TF

[Nukkamtti]

Hmmm - is this standard NHS practice - mask on and pick a number at random?

My minimum is now set at 8, if it had been there at the first night I reckon I'd have hated it.

Nukkamtti - I hope you're feeding back your experiences to your clinic!

I had a hard time getting hold of anyone at the clinic to speak to me and when they did they just said "give it another week and call back if nothing has improved and we'll give you advice then". Which I was a bit unhappy about, "why not now?" being my thought. I have to add an update that I just got a detailed e-mail reply, albeit from someone who "doesn't have my data"

Having said which, I just posted an update on your "after two weeks thread" as last night was significantly different for me.


PS Tigers' Fan -that threat seems a tad extreme!

[ElleCee]

When the technician at the clinic that I am going to tomorrow phoned me I said I knew how to change my pressure so she in that case try turnig it up for a couple of nights then either turning it right down or not using it, she was not at all perturbed about me chaning my own settings.
How cool is that?

Lorraine

[symmit]

TF - Exploding Lungs! My machine runs a mask test (I've turned it down to 5 seconds) during which it goes full pelt... No lungs have exploded during this phase of operation...

What bemuses me is that in the UK I can get an auto CPAP machine online after doing a sleep study and an online questionnaire from a company I've never met, online and the machine will decide what pressure from 4 to 20hPa to give me. I can then set whatever range of pressure is comfortable and effective for me. I can ring them at any time day or night and they take all the data by email and reply with encouragment and suggestions.

In australia I don't think you even need any kind of testing and you can walk into a shop and purchase.

On the NHS you need to see a GP, tell him what you think is wrong, get past being told to "lose weight", wait for an appointment, be prescribed a best guess pressure and dispensed a fixed pressure machine and ignored when it's not working well for you.

And yet I cannot believe how debilitating being a sufferer was before realising I was ill. Access to therapy needs to be improved (and I don't normally "soapbox" about stuff).

[acebass]

Nurse Pate threatened me with exploding lungs at my last annual review and not being able to seek compensation if they did. Now why would thgat be, Pate?

TF

My Clinic has not done annual reviews since 2005 due to lack of funding and resources...

[Sparticus]

Scots

Jeeez, thank god I live up here with people that know what there doing, sounds like some clinics dont know what they are doing

[Tigers Fan]

But our English schools teach us the different meanings of 'there' and 'their' - besides which, it hasn't snowed here. Yet.

[ElleCee]

You're lucky it hasn't snowed. My appointment today has had to be cancelled. I cannot get there and neither can the technician So I will have to wait until next year now.
Oh well, it was a good high while it lasted

I managed to get to work and did the real essential calls to my residents, made sure they had food and milk and told them that I was going home and would probably not be back for a few days.

Lorraine

[meldrew]

Hi Nuk......

I'm new to CPAP too, and it's important to keep a positive mental attitude.

When I get fed up with the mask, I go to the bedroom window. I look out on my 9 month old pride & joy (clue: 4 wheels in the corners and a 3 pointed star on the front) and remind myself that if I don't make a success of the CPAP treatment, I won't be able to drive it.

That makes me more determined and I go back to bed and give the b*****y mask one more go!

[symmit]

4 wheels in the corners and a 3 pointed star on the front

I wonder if you're a member of another forum I frequent

[Nukkamtti]

That's the spirit! I am determined too for me it is the idea of having the extra time during the day, I've been losing work and all my hobbies have been stopped or curtailed due to my incredibly short days.

Good luck to you!