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Finally the TRUTH from my doctor
#1
Finally the TRUTH from my doctor
To make a long story short after going back and forth with my doc about how my anxiety is unreal during the day after my centrals decide to go from 3 or 4 to 25 or 30 and the fact that I did have 25 centrals during my sleep study so I do have true central apnea and her saying she doesn't think I need it cause my OVERALL AHI (she loves stressing that) is way below 5. She finally said "listen, I really do sympathize with you and I don't doubt you feel that way but your insurance will not pay for it because your central index isn't high enough". Finally the truth! As most of us know already insurance refuses to pay to make you as comfortable as possible. As long as you're under 5 who cares how you feel! 

I hope wanttosleep80 reads this because that right there tells us all if you still feel like crap and your AHI is 5 or under it's up to you and you alone to make yourself as comfortable as possible with the machine your insurance qualifies you for. Even if I had the money to approach this the other way there aren't any machines available on any of the usual sites around me anyway. So on I must go with APAP and hope for the best and deal with the centrals up to 3 times a week. I'm only 2 months in on this life long journey so I might as well sit back, relax and see where it takes me. With any luck like she said "they hopefully will stop completely and that could take up to 6 months". Only time will tell.
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#2
RE: Finally the TRUTH from my doctor
There is a machine currently advertised on the Milwalkee Craigslist that is listed as a Resmed Airsense 10 Autoset in new condition for $700. The images are of a Aircurve 10 ASV. I suspect that with some careful questioning, you might find a deal.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Finally the TRUTH from my doctor
Thank you sleeprider. Out of pocket isn’t happening till at least the end of February unless I borrow it. Would you be able to give me some examples of the questions I should ask when I do move forward with it? Not all of them just a few key things I need to know? Besides the obvious like how many hours and the environment it’s been in while using and while being stored and has it ever been dropped or damaged in any way shape or form. Feel free to be technical if you need to be. I have a grasp of the terms associated with PAP.
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#4
RE: Finally the TRUTH from my doctor
Osiris, in this case there is an obvious discrepancy between the description and the image. You want to ask for information on the color of the machine, the name on the front of the cover, and perhaps guide them as they start the machine, press the control knob and home button to enter settings, scroll down to About and read the run hours. You can ask for a screenshot of the about screen as well before buying. If you ask these questions, you know the machine is real and you can see a time-stamped image of the run hours, serial and firmware version. At that point you need to agree on a price and safe method of payment and shipping. I'm not aware of anyone being ripped off in a CPAP transaction, but it pays to check and feel comfortable with the seller, especially when transacting over a distance.

In this case the seller has posted a phone number and that allows a direct contact. Usually that is a pretty good sign that it is not a scam.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files

How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Finally the TRUTH from my doctor
(12-05-2019, 10:33 AM)Sleeprider Wrote: Osiris, in this case there is an obvious discrepancy between the description and the image.  You want to ask for information on the color of the machine, the name on the front of the cover, and perhaps guide them as they start the machine, press the control knob and home button to enter settings, scroll down to About and read the run hours.  You can ask for a screenshot of the about screen as well before buying.  If you ask these questions, you know the machine is real and you can see a time-stamped image of the run hours, serial and firmware version.  At that point you need to agree on a price and safe method of payment and shipping.  I'm not aware of anyone being ripped off in a CPAP transaction, but it pays to check and feel comfortable with the seller, especially when transacting over a distance.  

In this case the seller has posted a phone number and that allows a direct contact. Usually that is a pretty good sign that it is not a scam.
Ok great, sound good. Will do, the most important part besides being the correct machine is it absolutely could not have been used with cats in the house at anytime ever. My bronchial tubes will swell shut almost instantaneously! Thanks for the info sleeprider
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#6
RE: Finally the TRUTH from my doctor
Is your doctor a sleep physician or a general practitioner? Have you considered changing to a more sympathetic doctor? The key to insurance is a letter of medical necessity which may override generalized insurance guidelines. Perhaps making the case that your sleeplessness puts you at risk for other cardiovascular or physiologic problems. Or, even on psychiatric terms to control panic attacks and generalized anxiety. With willing doctors, there is almost always a way to get treatment.
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#7
RE: Finally the TRUTH from my doctor
(12-06-2019, 05:51 AM)srlevine1 Wrote: Is your doctor a sleep physician or a general practitioner? Have you considered changing to a more sympathetic doctor? The key to insurance is a letter of medical necessity which may override generalized insurance guidelines. Perhaps making the case that your sleeplessness puts you at risk for other cardiovascular or physiologic problems. Or, even on psychiatric terms to control panic attacks and generalized anxiety. With willing doctors, there is almost always a way to get treatment.
Thanks srlevine1. Yes she is a sleep doc.  I’m aware of insurance having to cover something if a doc seems it medically necessary put she insists the anxiety is an outside source. Recreational drugs is what she’s convinced it is even though I can’t be any clearer that the only drugs I do now is my vape (nicotine) and the anxiety ONLY happens after a night with a lot of real centrals not SWJ. For example as I’m typing this my hands are trembling and welding is gonna be a PITA for the next few hours. There is no reason for it at all except centrals. Home is great, work is great, everything’s great apart from the usual drama that everyone has to deal with. My AHI last night was 2.9 with 15 centrals 8 of which were actual centrals. Medically everything is peachy because numbers are all that matters according to this woman. How I feel has nothing to do with CPAP as far as she is concerned.

I am seriously considering going elsewhere but I don’t have any choice but to wait till the new year because I have no time left at work this year. Partly because of sleep apnea. 

I was taking Xanax for years on an as needed basis for anxiety. I found out I have Hashimotos which is a thyroid disease back in 2010 so I thought to myself awesome I finally figured out why I wake up with such bad anxiety. NOPE! So he puts me in anti depressants. Which worked for the most part but I still felt like hell which came to a head earlier this year and my girl convinced me to go do a sleep study. That came back with 190 hypopneas, 5 OSA’s and 25 central apneas. So I start on APAP in September of this year. It takes me till the middle of November to get my settings right with the help of this forum. My centrals drop to almost nothing and I feel great, more awake and alert than I’ve felt in most of my adult life (I’m 44). My AHI is below 1 at that time. Then every few days I’d feel horrible and now it’s everyday since last Thursday. So I took a look at oscars charts and every day that I’ve felt like hell with trembling hands for no reason I had at least 15 total centrals the night before, up to 27 on Monday night. My AHI is still below 3 and my central index is 1.3. 

I’ve finally found the source of my anxiety but she fails to understand that and named off several outside reasons for the anxiety. I’m no doctor but I know I’m right about this. Nothing has stripped away my anxiety like a great nights sleep without central apneas.

I’m determined to get a doctor to see the correlation between central apneas and my anxiety. Apparently 25 episodes of having your brain not tell your lungs to breathe is A-OK! I DONT THINK SO DOC! Sure the centrals everyone has are fine but the ones where your breathing is stable and just stops is absolutely not fine. When I said if you look at my study I did have 25 true centrals and her response was well that breaks down to 4 an hour so that’s fine. I wanted to hang up on her right then and there. My brain not telling my lungs to inhale 4 times an hour is not fine in the slightest. 

I’m glad this forum exists! Without this place I would still be dealing with high FL’s also because they aren’t important either because the numbers are averaging out fine and who cares if it’s disturbing your sleep.

NUMBERS are all that matter! I experience it everyday at work and now I see that’s how you, as a human being are treated by the health care industry also. Makes you feel all warm and cozy inside doesn’t it?

Rant over. Had to get that out
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#8
RE: Finally the TRUTH from my doctor
Osiris357 ... hate to pee in your Cheerios, but have you seen the bad news about vaping and the onset of lung disease. I have seen scientific studies in PUBMED that show some correlation between OSA and nicotine. And neurological side-effects from vaping. I was also wondering about the dosage of the nicotine, perhaps you are feeling the symptoms of withdrawal?

Also, you mention welding ... have you considered environmental exposure to metals, flux, and welding fumes? (https://kemperamerica.com/welding-fumes-brain-damage/)

As an alternative, perhaps someone on the forum with experience with centrals could suggest if you might be better served with a bi-pap or even ASV unit like the one mentioned in the advertisement.

You might also post some screenshots of OSCAR data and let the community comment on the actual data.

Venting is good -- positive venting is even better.
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#9
RE: Finally the TRUTH from my doctor
(12-06-2019, 09:03 AM)srlevine1 Wrote: Osiris357 ... hate to pee in your Cheerios, but have you seen the bad news about vaping and the onset of lung disease. I have seen scientific studies in PUBMED that show some correlation between OSA and nicotine. And neurological side-effects from vaping. I was also wondering about the dosage of the nicotine, perhaps you are feeling the symptoms of withdrawal?

Also, you mention welding ... have you considered environmental exposure to metals, flux, and welding fumes? (https://kemperamerica.com/welding-fumes-brain-damage/)

As an alternative, perhaps someone on the forum with experience with centrals could suggest if you might be better served with a bi-pap or even ASV unit like the one mentioned in the advertisement.

You might also post some screenshots of OSCAR data and let the community comment on the actual data.

Venting is good -- positive venting is even better.
I’m not disagreeing with you completely because nothing like that is good for you but I’ve taken everything into consideration and by process of elimination since I started CPAP and the fact that I took Xanax on an as needed basis (28 would last me 4 to 5 months) and wasn’t taking it at all for weeks before my sleep study where I had 25 centrals so that couldn’t have effected me and my work environment is very clean by welding standards. As far as vaping is concerned I know too much nicotine causes anxiety and I know when I’ve been mindless taking puffs and put it down. I felt like this even when I quit smoking in 2013 and started running. Some days on the weekend when I would do my long run first thing in the morning I would be trembling as I would do my warm up walk and just pushed through the exhausted feeling. At that point I figured it was my thyroid acting up as hashimotos has a habit of doing. My thyroid has been ruled out of the equation. The only thing that equals zero anxiety is zero centrals. I am aware of the ASV machine. But since my numbers aren’t high enough, quite low in fact, my insurance will never deem it medically necessary and pay for an ASV machine. 

I wish it was something easy to eliminate or change. The only time in recent memory where I’ve woken up and felt great and not have to trudge through the day half awake all while dealing with anxiety is after a night of zero centrals. Of which I’ve had 5. 

This whole doctor not listening is new to me. I’ve never been flat out ignored like that when I’ve discussed my concerns because I went through the process of elimination with symptoms and possible causes after doing a lot of research. I was fully expecting “there’s no harm in trying, if it works great if not let’s keep digging”. I guess that where insurance comes into the picture and won’t even entertain it because numbers are showing it not to be a medical necessity so they don’t even bother to see if you feel better. That’s a hell of a spot to be in. Not bothering to try a treatment on someone because insurance will deny it even if it works and they feel better because numbers aren’t high enough. At this point I’m not sure who I’m annoyed with, the doc or the insurance company. Anyway life goes on and the clock keeps ticking. Only time will tell cause one of the last things she said was centrals can take up to 6 months to go away. Treatment induced yes but I don’t know how an air splint can eliminate something that’s caused by signals from brain or lack thereof in this case. I get it the numbers say not bad but I feel like hell when they happen regardless
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#10
RE: Finally the TRUTH from my doctor
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?
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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