Compliance ?

[internuk]

I wonder if anyone can advise ?
I am failing to get on with CPAP and the evil mask and am concerned about the "compliance" issue.
Though I am "compliant" in terms of my efforts and the hours used, I hope to give the machine etc back next week.
I need to drive with my work and wonder if anyone has experience of what happens if you take yourself off the failing treatment and ask for an alternative ?
Regards,
Stuart.

[Poppy56]

I think you would lose your licence until you could show the OSA was under control using an alternative treatment to CPAP.

[ElleCee]

Hi Stuart,
Out of curiosity, what cpap machine have you got and what pressure is it set at? How long is the ramp set for?

Perhaps with a little more information we can help?

Lorraine

[Tricia]

If you are diagnosed with Sleep Apnea you, by law, have to advise the DVLA. Link to the DVLA Medical Fitness to Drive Form:-

http://www.osaonline.com/default.asp

You should also advise your car insurance company. Should you be in an accident, fault or non-fault, and they discover that you haven't disclosed your Sleep Apnea, they probably wouldn't pay out.

Which machine and mask are you using and how long have you been using them?
What are the exact problems you are having?

[internuk]

Hi Lorraine,
Am using ResMed S8 Series 2 with Mirage Liberty full face mask. Pressure hasn't been discussed with me but I think its 7. Was 20 minute ramp now 30 minutes I believe. Since I've never managed any sleep with it on, its not really relevant. One of the problems is that I'm obviously very restless and as soon as I move, it leaks. So I sit there, rigid, scared to move anyway. Its already like a facial straightjacket, so I don't want it any tighter.
I wouldn't mind if there was some benefit, but absolutely nothing but negatives and I can't work in a zombie state.
They won't fit a humidifier due to recent chest infection I got from the first mask, so the cold air causes its own problems with headaches and toothache.
The hospital have been pretty useless I'm afraid.
regards,
Stuart.

[internuk]

I think you would lose your licence until you could show the OSA was under control using an alternative treatment to CPAP.

Thank you for your comment. I obviously need to find a suitable alternative then ! CPAP certainly isn't working at all for me after 6 weeks of misery.

[Tigers Fan]

An alternative

Hi internuk

Have you looked at http://www.oral-sleep-therapy.co.uk/ ?

You don't say if you have retained your driving license but if you have , please be careful to stay both safe and legal. If you have been diagnosed with OSA and you are not being treated successfully, you are obliged by law to inform the DVLA - who will take your license away till you are.

The measure is not compliance (the NHS want four hours per night and then claim they have successfully treated us) but lack of day-time sleepiness (Epworth Scale).

Clearly, speed of finding a successful alternative is of the essence. In the interim - for reasons of safety and legality - why not continue with CPAP? If you tell us your problems, between us, we may be able to help you achieve some success.

Good luck and safe driving

TF

[internuk]

Hi internuk

Have you looked at http://www.oral-sleep-therapy.co.uk/ ?

You don't say if you have retained your driving license but if you have , please be careful to stay both safe and legal. If you have been diagnosed with OSA and you are not being treated successfully, you are obliged by law to inform the DVLA - who will take your license away till you are.

The measure is not compliance (the NHS want four hours per night and then claim they have successfully treated us) but lack of day-time sleepiness (Epworth Scale).

Clearly, speed of finding a successful alternative is of the essence. In the interim - for reasons of safety and legality - why not continue with CPAP? If you tell us your problems, between us, we may be able to help you achieve some success.

Good luck and safe driving

TF

Many thanks for the input TF.
I have outlined some of the problems for other kind folk, but in essence, I'm only managing to sleep at all with the mask when exhausted. Usually very briefly.
Mainly discomfort of mask, inability to move without leaks, nasal problems, toothache and headache from cold air. Humidifier apparently not suitable as I developed chest infection with CPAP already.
Am at dentist tomorrow (ironically just before going back to hsopital) and will ask about your alternative suggestion. Thank you very much !
Regards,
Stuart.

[internuk]

If you are diagnosed with Sleep Apnea you, by law, have to advise the DVLA. Link to the DVLA Medical Fitness to Drive Form:-

http://www.osaonline.com/default.asp

You should also advise your car insurance company. Should you be in an accident, fault or non-fault, and they discover that you haven't disclosed your Sleep Apnea, they probably wouldn't pay out.

Which machine and mask are you using and how long have you been using them?
What are the exact problems you are having?

Hello Tricia,
Thanks for your comments.
Have done the DVLA part and the insurance company too, but my concern is how the hospital evaluate my 'progress' ... which has been backwards so far I'm afraid.
Am doing my best to be compliant in every way and I'm not driving at the moment, though my work requires it. Just wondering how long this takes to sort out !
Main problems are leaks from Mirage LIberty mask when I move (and I move a lot), constant headaches and toothache and now sinus troubles. I find the mask very uncomfortable and restricting but its set on low pressure after a disaster with previous nasal mask. Use ResMed S8 CPAP machine. Incidentally, a humidifier was not recommended as I got a nasty chest infection from first sortie with nasal mask. Have been wrestling with this for only six weeks, but it seems a lifetime and I feel worse than ever now.
Regards,
Stuart.

[Tricia]

If you have your mask fitted as tight as is comfortable, maybe you have the wrong size of mask? There are other types of full face masks too.
I'd go back to the hospital. If they're unhelpful, you'll have to stand your ground I'm afraid.

[ElleCee]

Hi InternUK
I might be able to help on 2 points.
The humidifier may not be a benefit anyway because if you are breathing in warm air it feels like you are suffocating.
If you have EPR set you need to wait a couple of minutes for it to get in synch with your breathing or again it can by quite claustrophobic and a bit scarey to start with.
What I do is put my hose under the covers with me. I can toss and turn as much as I like and it stays put, nice and cosy and warm in bed with me.
As for the mask, I also use a full face mask and resmed have these things called RemZzz and they are worth thier weight in gold. They stop that awful plastic being on your face so an end to all those lines in the morning but more than that they seal the leaks, quite how it happens I don't know, but they do work. They make it feel a lot lighter too.
If I can help any more I would be happy to.
Take care
Lorraine

[internuk]

Hi Lorraine,

I have replied but something went wrong ?
I looked up Remzzz after your last post, but mine is a nasal pillow plus mouthcover mask. Its called full face, but Remzzz don't fit it unfortunately. I've also tried the hose under the covers and that does help a bit, but as soon as I move the nasal pillows or mouthpiece come unstuck.
Anyway, I'm at the hospital tomorrow, so will try to get some help this time !
Thanks again.

Best regards,

Stuart.

[ElleCee]

Hi,
If you get to read this before you go try asking for a Mirage Quattro mask, they really are quite good.
Good luck today.
Lorraine

[internuk]

Re : compliance

Thank you to all those who've made suggestions. I have followed them all up and have spoken to my dentist this morning about an oral device.
I then went to the hospital for my regular 'assessment' and they actually suggested we could try that later on. Meanwhile, they were a bit more helpful than usual, but are happy with my excellent progress and compliance !
Seems I'm stuck with the evil machine for a while ;-)
Regards,
Stuart.

[Tricia]

Glad to hear that the hospital were friendlier this time. I hope things settle down with your mask.