Finally the TRUTH from my doctor

[Dormeo]

You mention a diagnosis of Hashimoto's in 2010, but you don't mention whether you're receiving treatment for it. If you're not, it'd probably be a good idea to follow up to see whether treatment is warranted. Do you have a rheumatologist? I ask because I had a different form of connective tissue disease, and my primary care doctor was not much help. When I eventually saw a rheumatologist, I got a good diagnosis and treatment.

[Osiris357]

Thanks for the feedback. How about posting some OSCAR charts and maybe someone will see something that can be changed for improvement. The footer of Sleeprider' post contains links to help you organize and upload Oscar data.

Just a thought -- have you been tested for heavy metals as part of a complete blood workup?

I have already posted a bunch a few weeks back. Everything is under control except my centrals. If I go back to epr off I still get real centrals not treatment induced and my FL’s are high and it’s hard for me to exhale. When I first went to epr 3 I had a lot of treatment emergent so I backed of to epr 1 and slowly made it back to epr 3 and thought I was good to go...I felt great and now they are back and now I’m back to feeling like hell. Who know maybe she ends up being right and they go away in 6 months. 

And yes I have to rule out heavy metals...hashimotos and sleep apnea are my only medical issues. Anyway it’s the weekend so hopefully I can get a long sleep in or two and see how that goes. At this rate my AHI is slowly rising so who knows maybe they will just keep getting worse and I won’t have to keep pushing anymore. As of now I’ve come to terms with it. Whatever happens happens and I’m gonna go for the ride and push when it seems necessary

[Osiris357]

You mention a diagnosis of Hashimoto's in 2010, but you don't mention whether you're receiving treatment for it.  If you're not, it'd probably be a good idea to follow up to see whether treatment is warranted.  Do you have a rheumatologist?  I ask because I had a different form of connective tissue disease, and my primary care doctor was not much help.  When I eventually saw a rheumatologist, I got a good diagnosis and treatment.

Yes Dormeo I am being treated for it, that’s why it’s ruled out. Had my levels checked and that good to go. The anxiety associated with that feels different not so intense and shorter duration. With hashimotos with me at least it’s more of a downer with zero energy and weight gain. Since being on cpap my metabolism has improved even further and lost about 10 lbs so far. So I definitely am seeing benefits from cpap with a few things which is a huge motivator to put the mask on every night and for naps. I am just thoroughly convinced  that it’s central apnea making me like this. It’s the only thing that matches up. Zero anxiety awake and alert = no centrals, anxiety and just wanna do absolutely nothing but try to stop feeling like I’m gonna jump out of my skin. 

This just came to mind. What if some or a lot of those centrals are actually mixed apnea? I’ve seen many that are marked central but have efforts to inhale on the flow rate waveform towards the end of the event. I’m not home and won’t be for hours but I’ll post a few zoomed in shots of what I’m talking about later

[Osiris357]

I’m not gonna stress about it. I’m just gonna ride out the rest of the year then start talking to other sleep docs in the area to see if I can get them to understand and explore this with me. I should start now to get a head start 

On a side note I don’t want to be on a machine as complicated as ASV I just want to get rid of these centrals. If I have to be then so be it but I need a doc to work with me in order to come to that conclusion. If I’m more like my fathers side I’m dead from heart issues in 20 years tops, especially if I can’t stop my heart and whole body from being stressed from all this then it’s definitely gonna come to that. So they can take that number 5 and stick it somewhere

[Sleeprider]

Another option is EERS which conserves some of the exhaled carbon dioxide in a short tube. There are currently threads by several other users trying EERS and a wiki. Typical experience is a reduction of central apnea and improved tidal volume and minute vent. If that sounds like something of interest I can point you the right direction.

[MyronH]

All the sleep doctors here in Austin Texas area only go by the overall AHI numbers too. It was a pain for me to finally get a Aircurve vauto. Still I have nights where I quit breathing, wake up sh**ty, and doc can't do anything because not enough events.

USA insurance sucks.

[Osiris357]

Yup. Last night I took my mask off 2 hours early for the second night in a row from flow Limitations that don’t trigger an event. So I ended up with an AHI of 1.5. This is going to be an interesting appointment come January cause I either want her to sign off on and AirCurve being medically necessary or the very least writing me a script so I can buy it myself. If not I’m just going to find a used one online. I’m in the process of getting funds together just in case she refuses to sign off on medical necessity or refuses to write a script. It’s happening either way cause I’m tired of this happening, I got the centrals licked and I thought I had flow Limitations also but here they are again. I’d rather take the zero out of pocket on my part but I’m prepared for anything. It’s all numbers to these doctors and insurance companies. They can’t quantify flow limitations so they aren’t there. Mine were “fine” back when they were worse than they are now.

[Osiris357]

Just got back from my appointment with the doc. As soon as she realized I knew what i was talking about, the conversation went as smooth as butter.  In the end she will gladly write me a script for a Vauto when I have the cash because the “AutoSet should go up to EPR 5 to handle flow limitations more effectively if needed without having to spend almost $1000 to get more pressure support”. She agreed that since my body adjusted quickly to the ventilation that was causing co2 based centrals  and the remaining centrals are post arousal I shouldn’t have any major issues with centrals while gradually increasing PS. 

It’s going to be awhile before I’m able to get the Vauto but at least I know I’m not going to have a hard time getting the script.

Some may be asking why do I want a Vauto if the AutoSet works good enough. The answer is “Good enough” isn’t acceptable to me when it comes to my heart health. The way I see it is if it wasn’t for insurance requiring at least an AHI of 5 to even considering paying for a more capable machine, I would already have it. The doctor who originally prescribed the AutoSet reminded me of what he said when I went in for my sleep study review. He said “you’re probably going to need a more capable machine but we have to wait and see”. In other words as a lot of us know you have to fail at CPAP for insurance to pay for BiLevel. 

So I guess I’m all buckled in for this ride finally.

[SarcasticDave94]

Sounds like a bit of progress. Hope the VAuto helps when you get it.

[Osiris357]

Thanks Dave. There should be a like button or reaction buttons. That would also reduce the amount of posts in threads IMO