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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
rick blaine
 
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Postby rick blaine on Fri Jan 12, 2018 6:45 pm

Hi SolisQuaesitor71,

You say: "When I had my last visit, the sleep doc noticed the pressure was different and I felt quite uneasy with the way that he looked at me. There's also DVLA to consider as they've said that I can drive - however, must have four hours sleep per night and not drive if tired. What they'd do if I'd messed with the machine, I dread to think."

There are two separate issues here - one being: 'What are the rules on UK patients beginning to self-manage - particularly with respect to APAP treatment?'

And the other being: 'What does an OSA patient have to demonstrate to his or her doctor that they, the patient, meets the DVLA's requirements about being safe to drive?'

These two issues are separate, and you should keep them that way in your mind.

To conflate them, or accuse your doctors and medical staff of conflating them, is a just bad thinking. Responsible, professional clinicians would not think that way, or act that way.

I have posted replies covering both of these issues before. If you go to the top left-hand corner of the forum's home page, you will find a search box. If you type in my 'handle', you will get a list.

If you work your way through that list, particularly wrt the last three years, you'll be better informed.

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Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: 60 Series Heated Humidifier (Non-Heated Tube)
Additional Comments: PR System One 561 Auto
Last edited by rick blaine on Mon Jan 15, 2018 4:18 pm, edited 1 time in total.

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SolisQuaesitor71
 
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Postby SolisQuaesitor71 on Sat Jan 13, 2018 12:40 pm

nightnight wrote:Hey, I know just how you feel. I, too, contemplated the trach - why not?

Look, for me, it took me 2 years to get used to the therapy. Yup - 2 years. Now, I cannot sleep well without my mask. Still don't feel GREAT, but I definitely feel crappy if I do not use it.

I have a Bi-pap machine. The continuous flow just was too much for me.

So, what I did was this. I used the machine every night. If I woke up, I would try and go back to sleep. If I could not go back to sleep with the machine on, I just took it off and slept without it. I did that every night. Eventually I got used to it..... but it did take 2 years for me.

Here's something to ponder... when I first had my machine, I could not speak when it was on..... just could not do it. Now, I can. I believe my throat just got stronger to be able to control things.

Good luck


I can certainly see it taking a long time of adjustment getting used to everything. You seem to have done what i have which is to abandon the machine if it isn't working for the night. Unfortunately i feel really bad if this has to happen as i know that i always feel better after a night using the machine than a night not doing.
It's very frustrating that i can have a good sleep one night and the next it just doesn't work out when i haven't changed any settings or even the mask fitment.

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Okie bipap
 
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Postby Okie bipap on Sat Jan 13, 2018 5:04 pm

We all have nights when our sleep quality is scrappy. You can't blame everything on the machine. I have nights where I barely sleep at all, and it is not the fault of the machine.

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Additional Comments: IPAP 12-22, ps 4, Sleepyhead software

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LSAT
 
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Postby LSAT on Sat Jan 13, 2018 5:25 pm

SolisQuaesitor71 wrote:
I can certainly see it taking a long time of adjustment getting used to everything. You seem to have done what i have which is to abandon the machine if it isn't working for the night. Unfortunately i feel really bad if this has to happen as i know that i always feel better after a night using the machine than a night not doing.
It's very frustrating that i can have a good sleep one night and the next it just doesn't work out when i haven't changed any settings or even the mask fitment.


It happens to all 0f us..same with AHI. I could go a week sleeping well with AHI in thet 1.5-2.0 area and then have a night where I sleep about 4 hours and have an AHI of 5. I just ignore it and maintain all settings

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Machine: S9 AutoSet™ CPAP Machine
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Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: S9 Autoset...APAP Settings 11-15

Back up mask is another Quattro FF and an F20
Buckwheat Hull Pillow (CPAPfit) from http://www.pur-sleep.com/

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SolisQuaesitor71
 
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Postby SolisQuaesitor71 on Sun Jan 14, 2018 12:47 pm

Thanks to everyone for your words of advice and encouragement. It's clear to me now that it isn't unreasonable to expect me to take considerably longer than the 2 months that i've been on the treatment for me to be fully accustomed to it.

I'm not going to pursue the surgery option and will concentrate on working with the CPAP. I'm thinking that a mask liner may be an option however have read also about 'comfort gel' masks which are supplied by Hope2Sleep in the UK. However its unclear whether this works to replace the mask on my Resmed Quattro so i may email them tomorrow to enquire.

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Diamondminek
 
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Postby Diamondminek on Mon Jan 15, 2018 4:02 am

The DVLA only want you to be using the machine 4 hours a night. They don't even check effectiveness, so don't let the thought of them influence how you set your machine. Getting it right will increase compliance and improve your ahi, and this board was a huge help to me getting the benefit from a better machine.

There are no legalities about who can adjust it. Technically it belongs to the nhs on a long term loan to you but there's nothing to say you can't adjust it, just Drs who think they know it all. A good clinic will actively support you to self manage, listen to your feedback and work with you to refine the settings. Acceptable clinics will acknowledge they don't know everything and turn a blind eye - once you are on a review every 2 or 3 years they really won't be checking on you.

The silent night liners are supposed to be very good, they stock them based on feedback that they worked better for most people. If you make your own a lot of people use glue dots to help them stay in place. They have a Facebook group too, which is pretty strict on the rules and being nice, but also very supportive. Although I'd stay here for more detailed information and help.

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SolisQuaesitor71
 
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Postby SolisQuaesitor71 on Mon Jan 15, 2018 1:34 pm

Diamondminek wrote:The DVLA only want you to be using the machine 4 hours a night. They don't even check effectiveness, so don't let the thought of them influence how you set your machine. Getting it right will increase compliance and improve your ahi, and this board was a huge help to me getting the benefit from a better machine.

There are no legalities about who can adjust it. Technically it belongs to the nhs on a long term loan to you but there's nothing to say you can't adjust it, just Drs who think they know it all. A good clinic will actively support you to self manage, listen to your feedback and work with you to refine the settings. Acceptable clinics will acknowledge they don't know everything and turn a blind eye - once you are on a review every 2 or 3 years they really won't be checking on you.

The silent night liners are supposed to be very good, they stock them based on feedback that they worked better for most people. If you make your own a lot of people use glue dots to help them stay in place. They have a Facebook group too, which is pretty strict on the rules and being nice, but also very supportive. Although I'd stay here for more detailed information and help.


Hi, I have my hospital appointment tomorrow morning so i think i'll just tell them that i intend to tweak some of the settings to monitor any improvements to my treatment and see how they respond. They wanted to review me in 2 years after my last visit before christmas but i said that i wanted another interim one due to the problems i'd been having hence tomorrows appointment.

I'll look into trying the silent night liners also.

Many thanks for everyones help and advice

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HoseCrusher
 
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Postby HoseCrusher on Mon Jan 15, 2018 3:19 pm

Remember to keep perspective...

You own the business of keeping your body healthy. Some aspects are beyond you abilities and knowledge, but you are the chief officer of your business.

You hired these others to help improve your business.

They work for you.

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Machine is an S8 Autoset II. SpO2 96+% and holding...

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