Annoyed with sleep clinic

[mgaggie]

Apologies for the very long rant

I had to go in for a mandatory 6 month compliance check. When I arrived 10 mins early I was ushered in (usually I have to wait past my appt time), the therapist didn't know why I was there. When she realised I had changed my pressure from 17 to 11 (my specialist said that was ok), she nearly had kittens. "You aren't allowed to do THAT!" then "How did you learn to change the pressure?" I replied with "YouTube showed me how", I then told her how I can't always afford the $80 in fuel to come down for them to change something I can do myself "Oh you can take it to any cpap supplier and they can change the pressure for you" (I bet they charge to change pressure if you didn't buy the machine from them).

I also had to explain again my insomnia issues, ear drum perforations when the pressure is high and other issues which I've told them each and every time I've visited them (and they have noted in my file), they obviously don't read any notes from previous visits. Then she wanted to know why I didn't use the ramp function, I told her I didn't need it, I coped well with the pressure at 11. I was told I should be using the ramp function every time I turn the machine on as it will help me get used to the high pressure she wanted to reset my machine to, because at my last sleep study they had the pressure up to 17 and I tolerated it well but didn't go into REM sleep so she said that my pressure would actually need to higher than 17 for REM sleep. I said to her there is no way I can tolerate a constant 17 as my mask constantly leaked etc.

Then she told me I should hire an APAP for a month or two, as they don't have any (they only provide straight CPAP machines). I am thoroughly sick of having to explain the same stuff every time and treating me like a moron. I know my body, I know that my ears aren't just 'popping' and the only reason I tolerated 17 at the sleep study for 3 hours was due to the fact I couldn't move with all the blasted wires attached to me and at 3am in the morning I was exhausted.

[letsride]

Your in a tough situation many of us has had or is facing with these so called Medical professionals.
They have lost the point of why we visit them, "quality of life"
Is it possible to switch provider?

[49er]

Totally understandable mgaggie.

I really get tired of medical professionals simply wanting to engage in power plays like that therapist did and not provide any real assistance. Letsride is correct about them forgetting why they are in the field.

49er

Apologies for the very long rant

I had to go in for a mandatory 6 month compliance check. When I arrived 10 mins early I was ushered in (usually I have to wait past my appt time), the therapist didn't know why I was there. When she realised I had changed my pressure from 17 to 11 (my specialist said that was ok), she nearly had kittens. "You aren't allowed to do THAT!" then "How did you learn to change the pressure?" I replied with "YouTube showed me how", I then told her how I can't always afford the $80 in fuel to come down for them to change something I can do myself "Oh you can take it to any cpap supplier and they can change the pressure for you" (I bet they charge to change pressure if you didn't buy the machine from them).

I also had to explain again my insomnia issues, ear drum perforations when the pressure is high and other issues which I've told them each and every time I've visited them (and they have noted in my file), they obviously don't read any notes from previous visits. Then she wanted to know why I didn't use the ramp function, I told her I didn't need it, I coped well with the pressure at 11. I was told I should be using the ramp function every time I turn the machine on as it will help me get used to the high pressure she wanted to reset my machine to, because at my last sleep study they had the pressure up to 17 and I tolerated it well but didn't go into REM sleep so she said that my pressure would actually need to higher than 17 for REM sleep. I said to her there is no way I can tolerate a constant 17 as my mask constantly leaked etc.

Then she told me I should hire an APAP for a month or two, as they don't have any (they only provide straight CPAP machines). I am thoroughly sick of having to explain the same stuff every time and treating me like a moron. I know my body, I know that my ears aren't just 'popping' and the only reason I tolerated 17 at the sleep study for 3 hours was due to the fact I couldn't move with all the blasted wires attached to me and at 3am in the morning I was exhausted.

[mgaggie]

Your in a tough situation many of us has had or is facing with these so called Medical professionals.
They have lost the point of why we visit them, "quality of life"
Is it possible to switch provider?

At the moment I can't switch providers. The only way I could kick them to the curb is to buy a machine outright and hand back the one I've 'rented indefinately' for $90. An APAP here in Australia is just over $2000 I refuse to pay that much, and atm I don't have enough to buy a APAP overseas (hopefully soon).

I am so sick of being sick

[Julie]

Have you added up how many $90. pays you've put out so far? If you have a credit card, take the plunge one time for something like e.g. my machine (way less expensive than others, but as complete and reliable) then pay it down $90/month you'll be ahead of the game but no further behind than if you'd continued on as you are now.

[purple]

Trying to figure out how, if you had a setting of 18, you can actually get quality sleep at 11? And by the way, the problem you are describing with a pressure that breaks ear drums, that sounds like you need to see an ENT. but I bet you have already done that.

[-tim]

You made a comment of Yarra Valley in the past. North side or South? I know a doc in Mbark that might have other options for sleep studies based on who you are seeing and he likes his DME equivalent but still asks me questions. I import most supplies but when I need to buy local, I tend to buy some supplies from a place in Collingwood and I have used a place on Whitehorse road.

I bought a machine from stlmark for about 1/4 of what a machine would cost locally and I think you should consider that option.

[Taringa542]

Maggie, PM sent

[mgaggie]

Have you added up how many $90. pays you've put out so far? If you have a credit card, take the plunge one time for something like e.g. my machine (way less expensive than others, but as complete and reliable) then pay it down $90/month you'll be ahead of the game but no further behind than if you'd continued on as you are now.

Sorry Julie, I should of been clearer. I've only had to pay $90 once and as long as I meet thier requirements, I keep it.

[mgaggie]

Trying to figure out how, if you had a setting of 18, you can actually get quality sleep at 11? And by the way, the problem you are describing with a pressure that breaks ear drums, that sounds like you need to see an ENT. but I bet you have already done that.

Yep been to the ENT, nothing can be done a full face mask helps. As for the pressure setting of 17, they said I tolerated it well which means I didn't rip my mask off and scream at them. As I never went into REM sleep they have no idea if 17 is actually doing me any good. In my 1st titration (no REM sleep) they found that 8 cm kept my airways open, so I have no idea why they felt the need to bump it up to 17.

Thankyou everyone for your replies, thanks to tim and taringa fellow aussies I'll pm you shortly.

[mgaggie]

I also want to say I am overwhelmed and humbled at the responses and offers of help, especially when my post was just a whinge. Only fellow xpapers would understand the nuances of what I was whinging about. Non-papers look at me like I have two heads if I try to explain what happend.

So thanks for listening

[Todzo]

Apologies for the very long rant

I had to go in for a mandatory 6 month compliance check. When I arrived 10 mins early I was ushered in (usually I have to wait past my appt time), the therapist didn't know why I was there.

Sounds like this was planned ahead of time? Sounds like she very well knew!

When she realised I had changed my pressure from 17 to 11 (my specialist said that was ok), she nearly had kittens. "You aren't allowed to do THAT!"

Were you taking data as you did all of this? I hope so. Regardless the main point here is that your needs changed, working with your specialist (what is a specialist in your area BTW) you found a way that met your needs.

then "How did you learn to change the pressure?" I replied with "YouTube showed me how", I then told her how I can't always afford the $80 in fuel to come down for them to change something I can do myself "Oh you can take it to any cpap supplier and they can change the pressure for you" (I bet they charge to change pressure if you didn't buy the machine from them).

I think that basic point here is why do you need to have them do what you can do for yourself easily. Is it their purpose to simply take money and time from you? You have a medical need and they make themselves opposing to that need. Yes we have a problem and need to solve it. We need them out of the way and moved into a cooperative mode. Time to talk with the government.

I also had to explain again my insomnia issues, ear drum perforations when the pressure is high and other issues which I've told them each and every time I've visited them (and they have noted in my file), they obviously don't read any notes from previous visits.

Yet another indication of a bad attitude and basic incompetence.

Then she wanted to know why I didn't use the ramp function, I told her I didn't need it, I coped well with the pressure at 11. I was told I should be using the ramp function every time I turn the machine on as it will help me get used to the high pressure she wanted to reset my machine to, because at my last sleep study they had the pressure up to 17 and I tolerated it well but didn't go into REM sleep so she said that my pressure would actually need to higher than 17 for REM sleep. I said to her there is no way I can tolerate a constant 17 as my mask constantly leaked etc.

She is very likely simply wrong about super high pressure and REM. The fact that you do well at 11 should have made her suspicious of that!! Another indication of incompetence!

Then she told me I should hire an APAP for a month or two, as they don't have any (they only provide straight CPAP machines).

Honestly, I believe an APAP is a very silly way to try to determine pressure need. Having done my own “titration” using a CPAP with detailed flow data I am a million times more confident that I have the minimum pressure needed to squelch my AHI as well as sub clinical obstructive events. Reduce pressure 1 cm/H2O at a time and see what it does for seven to ten days and decide on the next move.

Contrast that with “completely upset the life of the person time wise, cost wise, and environment wise” and expect that your results are indicative of what will really work. The sleep medicine industry is indeed totally out of touch with reality. I am surprised that their very very sad sad long term usability of CPAP numbers might actually be above 50%.

I am thoroughly sick of having to explain the same stuff every time and treating me like a moron. I know my body, I know that my ears aren't just 'popping' and the only reason I tolerated 17 at the sleep study for 3 hours was due to the fact I couldn't move with all the blasted wires attached to me and at 3am in the morning I was exhausted.

So start a group and take the industry to task.

[mgaggie]

When she realised I had changed my pressure from 17 to 11 (my specialist said that was ok), she nearly had kittens. "You aren't allowed to do THAT!"

Were you taking data as you did all of this? I hope so. Regardless the main point here is that your needs changed, working with your specialist (what is a specialist in your area BTW) you found a way that met your needs.

Unfortunately I only had a brick machine, so no data. A specialist in my area is a Respiratory and Sleep Physician so he has more knowledge than a therapist.

One positive is at least with the APAP I've hired for a month (thanks to my mum for hiring it) I'll get some USEFUL data and hopefully work out my optimal pressure and be able to wave that in their faces. I've also decided to write a letter of complaint, not sure if it will do any good but at least I'll have tried.