I think I wasted my time.

OK, 3rd sleep study, 2nd titration, is done.

Different tech this time and things didn't go well. This tech apparently knows everything there is to know about SDB.

According to the tech:

Mouth leaks only occur if the pressure isn't set correctly.
ASV machines can kill you.

That's where we started from.

Unlike the other 2 studies, I was not allowed to sleep on the floor - even after explaining my situation and then after sitting on the bed blatantly stating the mattress was too soft.

Of course I woke up early (3:30) with a backache to go along with a headache (because they were going to fart around with CPAP first instead of ASV first). There is no way I could go back to sleep with my back already sore, so the study was ended early. I don't know if they got enough information or not - they wouldn't even say that.

I asked if I should continue to use my machine at home or stop using it until the report is complete. Again, they wouldn't say. I pressed the issue and was told to use it at their recommended settings. I asked what those were since the last settings they gave me were APAP settings and the trial period has ended. They wouldn't or couldn't say.

So now, I'm on my 4th cup of coffee already today and absolutely no further along towards getting therapy.

At least I'm not out of pocket for this....

My condolences. Sounds like the jerk tech I had some years ago has moved to your area.
I still swear that if I saw that jerk in a crosswalk I would be real tempted to run him down. Know it all SOB...did you know that a patient having the software for these machines is "against a federal law"? Yep, that was what he told me and this was back when software from ResMed and Respironics were commonly sold to patients (at a huge profit I might add). Dumbass. I call it my titration study from hell. I had to raise a big stink and threaten to leave to get him to let me use nasal pillows. Left there with a massive headache and blood pressure at stroke level the next morning.

It's hard enough to get a competent tech in the private sector much less the VA.
I am not so sure your doc really listened to you or if he did that he conveyed that to the sleep study tech people.

Wow, so sorry you had such a rough night. Would it be possible to get the machine you want and set it up yourself? Possibly a loaner, or 2nd hand one? Just don't give up.

Pugsy wrote:It's hard enough to get a competent tech in the private sector much less the VA.
I am not so sure your doc really listened to you or if he did that he conveyed that to the sleep study tech people.

I'm beginning to wonder if there is such a thing, "competent" seems SOOOOO hard to find these days - and not just when it comes to sleep techs... At least the techs from my first 2 studies weren't know it alls.

I really don't know what to do at this point. I will probably just not use the machine until they can pull theirs heads out of their asses and do what a "healthcare provider" is SUPPOSED to do - PROVIDE.

Using the machine in CPAP mode is useless - my AHI is always higher than it was without it, I get no sleep, and wake with a headache either way. I didn't have success with the ASV either (because of mask and/or leak issues), but as long as I kept the mask on most of the night, I would wake headache free.

So here I am, 8 months after bringing this up with my doctor, and I all I have to show for it is a useless CPAP machine and still no sleep.

Cardsfan wrote:Wow, so sorry you had such a rough night. Would it be possible to get the machine you want and set it up yourself? Possibly a loaner, or 2nd hand one? Just don't give up.

I could get a machine that I think has a chance to work - I could buy a used ASV. However, there is still the mask/leak issue to contend with. But maybe now that I know mouth leaks only occur if the pressure is wrong, I could just keep adjusting pressure until they stop - because regardless of other data, that would be the perfect pressure for me - right?

Effing moron.

I'd want to get the machine asap. Work out the leak issues along the way. Wouldn't some therapy be better than nothing? Because right now, you have no therapy.

Cardsfan wrote:I'd want to get the machine asap. Work out the leak issues along the way. Wouldn't some therapy be better than nothing? Because right now, you have no therapy.

Well, you have a point, BUT, even used ones are expensive, and according to the tech, it could kill me - or at least blow up a lung!

Then, if I adjust it so I don't have any mouth leaks - because according to the tech that would be my perfect pressure - I still wouldn't be getting any therapy. I guess the ASV I tried is just too stupid to auto adjust. It going to 25 pressure wasn't needed. Even though I had zero flags most of the time - they must have been LIES perpetrated by the stupid machine!

I am beyond angry and dumbfounded...

Sorry Max--better you than me. I dont sleep well period. So what does it take for you to get it together?

MaxINTJ wrote:

Pugsy wrote:It's hard enough to get a competent tech in the private sector much less the VA.
I am not so sure your doc really listened to you or if he did that he conveyed that to the sleep study tech people.

I'm beginning to wonder if there is such a thing, "competent" seems SOOOOO hard to find these days - and not just when it comes to sleep techs... At least the techs from my first 2 studies weren't know it alls.

I really don't know what to do at this point. I will probably just not use the machine until they can pull theirs heads out of their asses and do what a "healthcare provider" is SUPPOSED to do - PROVIDE.

Using the machine in CPAP mode is useless - my AHI is always higher than it was without it, I get no sleep, and wake with a headache either way. I didn't have success with the ASV either (because of mask and/or leak issues), but as long as I kept the mask on most of the night, I would wake headache free.

So here I am, 8 months after bringing this up with my doctor, and I all I have to show for it is a useless CPAP machine and still no sleep.

I am truly sorry to hear that you did not find the solution you seek.
What everyone has to realize is that "healthcare providers" can do no more than trying. Skills vary, knowledge vary, commitment varies. The solution for you is not straightforward.

Only you can solve your problems; everyone else is a consultant. Some are paid, many are free.
Think about what you have learned. Regroup. Create a new plan. Execute. Regroup ...

Maybe it is clear to others, but I do not know exactly where your bottle neck is. Do you?
Are you still trying to sleep on your stomach with your face smashed into a pillow?

TedVPAP wrote:I am truly sorry to hear that you did not find the solution you seek.
What everyone has to realize is that "healthcare providers" can do no more than trying. Skills vary, knowledge vary, commitment varies. The solution for you is not straightforward.

Only you can solve your problems; everyone else is a consultant. Some are paid, many are free.
Think about what you have learned. Regroup. Create a new plan. Execute. Regroup ...

Maybe it is clear to others, but I do not know exactly where your bottle neck is. Do you?
Are you still trying to sleep on your stomach with your face smashed into a pillow?

Firstly, the closest I have come to achieving SDB Nirvana has been with an ASV, and they are expensive. I don't even know if I can overcome the other issues if I did have an ASV.

Yes, I still sleep on a rock hard surface with feather pillows - on my stomach mostly face down. I find it the most comfortable position and the least stressful on this old body.

IF I had an ASV, I would be left with 2 choices; the Amara View with which I can only get 3-4 hours of sleep in, or the Dreamwear which I can wear all night but has, as yet unresolved, mouth leaking issues.

SO, step 1 is to get the correct machine somehow.

Step 2 is trying to make a mask work.

I'm just not feeling the good vibes.

I'm sorry Max! Stupidity abounds these days it seems. Get the result of the study and come tell us, someone might have some help. I know we get sleep techs lurking. Used to have a great one offer suggestions or tell us what to ask our docs.

Are you doing anything for your back? Like PT? I have to do some exercises or I'm toast. Maybe if you can sleep on your side you can find a mask that works. Best bed I ever had was an extra-firm Sealy Posturpedic.

Muse-Inc wrote:I'm sorry Max! Stupidity abounds these days it seems. Get the result of the study and come tell us, someone might have some help. I know we get sleep techs lurking. Used to have a great one offer suggestions or tell us what to ask our docs.

Are you doing anything for your back? Like PT? I have to do some exercises or I'm toast. Maybe if you can sleep on your side you can find a mask that works. Best bed I ever had was an extra-firm Sealy Posturpedic.

As I have said before, I can't blame them for not fixing things the first time. My issue is not straightforward so initially they wouldn't have known that. But now, they should have plenty of information to treat my issue correctly.

As for my back, no PT. 15 years or so ago when I was treated for it, I had a lot of PT and chiropractic treatment. Once it was repaired, I was told because there is the weakness (damage), I will always have issues with it. I was told just to expect pain when doing certain things and to rest it for recovery. That has kept me going all these years without any followup treatment, so they did a great job.

I did not use my machine last night, nor will I use it until the "experts" come back and tell me what settings I'm supposed to use based on their "expert" testing equipment and procedures. If they do not prescribe a different machine, I'm going to have a LOT to say to everyone I can get a hold of.