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Sleep study suggests central but diagnosed with obstructive - Catherine416 - 12-11-2021
Hi, beerdujour from the sleep apnea subreddit sent me here. This is my first post so bear with me. I’m new to all of this.
After talking to my doctor about various symptoms, she ordered a home sleep study. I was diagnosed with moderate to severe obstructive sleep apnea. According to my report I have an AHI of 22.6, 56 apneas that include 17 obstructive, 35 central and 4 unclassified.
[url=https://imgur.com/a/ITQGdBo][/url]
I went to get my prescribed CPAP and the DME person was first of all, shocked at the number of central apneas and also confused as to why I was diagnosed with obstructive. She recommended that I refuse the CPAP and ask my doctor about an in-lab study or a new script for a bipap or ASV. My dr left me a message and told me to go ahead with the CPAP. This is my PCP, not a sleep specialist. The DME person basically told me that I’m going to spend 90 days on a CPAP which won’t do anything for my apnea, until I fail it and I have to go back to the drawing board with an in-lab study. All the while, with a dangerous health condition that I’m trying to get relief from.
If it’s relevant, I’m 5’ 5” and 135 lbs and healthy. When I am drifting off to sleep I can literally feel my body forget to breathe.
My first night was awful. I have a Resmed iBreeze and it is set to auto between a pressure of 4 and 20. My pressure throughout the night was always above 17, I felt like I was drowning in air. I don’t have the capability to change the pressure and have been told to stick with the prescribed numbers anyway. Someone showed me how to change the EPR and I am setting it for 3 tonight to see if it helps.
I don’t think I’m having any mask issues. I have a full face mask with memory foam, it’s comfortable and I tested it for leaks and it’s fine.
I just feel so discouraged, like I’m going through all of this for no reason. I think on Monday I’m going to call my PCP and try to get an appt to discuss. If that doesn’t go anywhere, maybe a sleep specialist? I’m sure a lot of this has to do with the insurance but I’m honestly considering getting whatever I need out of pocket so I don’t have to wait around for 3 months.
I am ultimately going to listen to my doctor, but would appreciate any insight into this to help me guide the conversation with her. I’m desperate.
RE: Sleep study suggests central but diagnosed with obstructive - Sleeprider - 12-11-2021
Beerdujour is Gideon on this forum. Welcome. You have an amazing RT at your DME who was 100% right. You have complex sleep apnea with a mix of central and obstructive events. The ASV is the ideal machine for this, however many insurance companies require that you fail CPAP before being reimbursed for bilevel ASV. Resvent is a relatively uncommon brand of CPAP made in China that has a machine that looks and sounds like Resmed. We have no software to support this machine and can only assume the problem you have with it is due to central apnea.
I recommend you ask your doctor for a titration test that evaluates bilevel ASV and get a Resmed Aircurve 10 ASV machine to treat your condition. You have no physical risk factors for obstructive sleep apnea and have been misdiagnosed with obstructive sleep apnea, when in fact you have complex or central sleep apnea. If your AHI on this machine is higher than the 22 AHI that you had on your sleep study, the machine is actually enhancing your central apnea, and you should discuss this with your doctor and DME and return this useless piece of crap, I mean CPAP. Meanwhile, do some research on what an ASV device is and how it treats central apnea. This link describes the Resmed Aircurve 10 ASV starting at page 28. https://document.resmed.com/en-us/documents/products/titration/s9-vpap-tx/user-guide/1013904_Sleep_Lab_Titration_Guide_amer_eng.pdf
RE: Sleep study suggests central but diagnosed with obstructive - SarcasticDave94 - 12-11-2021
Welcome to the Apnea Board,
I'll ditto Sleeprider's comment. I've had the ResMed AirCurve 10 ASV in the past for severe Central Apnea. It will take on all your Apnea and give you great therapy. The standard BPAP, no don't try it. CA will increase.
I would suggest doing what I did when in this same situation as you are now. Get your detailed copy of the diagnostic test. Use a highlighter and mark the Central Apnea within the Events count chart. Take it to your doctor. "OK doctor, I have this amount of Central Apnea. I want these treated, not ignored. I need ASV for Central Apnea, code G47.37."
Meantime, create a sleep diary. Note symptoms and complaints. Unrest, fatigue, high CA ongoing, etc. Tell doc this too. You probably have no positive thing to state about therapy until ASV.
RE: Sleep study suggests central but diagnosed with obstructive - Gideon - 12-12-2021
Thanks guys.
And welcome to Apnea board. I saw this as a long and difficult journey and wanted the OP to have help in getting the best machine and maintain history to aid in getting the best therapy for the centrals. Keep your eye on that tech as they seem to want to do what is best for you.
Specifically what make and model of CPAP do you have, the name should be on theachines front
RE: Sleep study suggests central but diagnosed with obstructive - S. Manz - 12-12-2021
One day soon, all patients will be prescribed ASV machines because quite frankly, regular CPAPS/APAPS/BILEVELS whatever , do not act on a large spectrum of servo feedback other than watching for pressure changes in your breathing and increasing or decreasing air pressure accordingly....sometimes...incorrectly...Its like these models are trying to precision shoot a mosquito with an AMRAM from 10,000 feet away.
Needless to say that this method of apnea therapy is in my view already outdated however with a large inventory of these old-school equipment around at cheap wholesale pricing, the insurance companies tend to want to flog them as much as possible, so...
One day all machines will have to be a minimum of ASV and then when that happens, it will be work towards making all home equipment more and more like full-tilt clinical grade Ventilators, a technology trend that has already begun with introduction of AVAPS for home use.
In short you just have to be patient (pun intended) and work the system for a while, unless you just do what I did and pay for an ASV out of pocket and then (like me) you will find that there are vast differences between the quality of different ASVs and how they deliver therapy, except that Resmed is currently on a roll these days with the Philips recall and all.
Just hang in there and you'l get your ASV...seems like more and more insurance companies are approving the expense these days, anyway.
RE: Sleep study suggests central but diagnosed with obstructive - SarcasticDave94 - 12-12-2021
S. Manz, I'd have to disagree with thoughts and plans on issuing ASV for everyone. And it sounds like you're topic drifting. The OP Catherine has Central Apnea, so this is the reason ASV therapy exists. Let's stick to why she needs ASV and how to get it, and then about ASV therapy and settings for her. Thanks.
RE: Sleep study suggests central but diagnosed with obstructive - S. Manz - 12-12-2021
Yes very odd that a patient with a clear CAS scoring is being prescribed a non-ASV machine.
Depending on the sate and insurance coverage, this may be an uphill battle but with perseverance the OP should be able to gat appropriate therapy.
RE: Sleep study suggests central but diagnosed with obstructive - Rich66 - 12-12-2021
I had to fail the first 3 machines, and have 4 sleep studies, and 4 doctor visits before I finally got an ASV machine. It took 9 months total. Insurance paid for it all, but that was a long time of me jumping through their hoops. And then the DME gave me an outdated machine that they didn't have the equipment anymore to monitor me. No respect for the patient.
RE: Sleep study suggests central but diagnosed with obstructive - Catherine416 - 12-13-2021
(12-11-2021, 07:43 PM)Sleeprider Wrote: Beerdujour is Gideon on this forum. Welcome. You have an amazing RT at your DME who was 100% right. You have complex sleep apnea with a mix of central and obstructive events. The ASV is the ideal machine for this, however many insurance companies require that you fail CPAP before being reimbursed for bilevel ASV. Resvent is a relatively uncommon brand of CPAP made in China that has a machine that looks and sounds like Resmed. We have no software to support this machine and can only assume the problem you have with it is due to central apnea.
I recommend you ask your doctor for a titration test that evaluates bilevel ASV and get a Resmed Aircurve 10 ASV machine to treat your condition. You have no physical risk factors for obstructive sleep apnea and have been misdiagnosed with obstructive sleep apnea, when in fact you have complex or central sleep apnea. If your AHI on this machine is higher than the 22 AHI that you had on your sleep study, the machine is actually enhancing your central apnea, and you should discuss this with your doctor and DME and return this useless piece of crap, I mean CPAP. Meanwhile, do some research on what an ASV device is and how it treats central apnea. This link describes the Resmed Aircurve 10 ASV starting at page 28. https://document.resmed.com/en-us/documents/products/titration/s9-vpap-tx/user-guide/1013904_Sleep_Lab_Titration_Guide_amer_eng.pdf
RE: Sleep study suggests central but diagnosed with obstructive - Catherine416 - 12-13-2021
Sorry, obviously still learning how to use this forum! I just wanted to thank everyone for some seriously helpful information, which I armed myself with to talk to my PCP today. I told her my concerns and she was completely unwilling to listen. She told me that the cpap would work for central apneas. I told her that I can feel myself stop breathing when I’m drifting off and that when I’m not breathing, the cpap does not put any pressure out and prompt me to breathe. She looked me in the eye and said “yes it does”. And I said “no, when I don’t breathe, it doesn’t put out any pressure. I can feel it.” And she says “yes it does.” Almost kind of combative, like she didn’t like me suggesting she could be wrong. She’s very young and has terrible bedside matter. She must have realized that she didn’t have a real answer for me , so she referred me to a specialist. I got in with the specialist in February. For now I’m going to try to adhere to the CPaP until my appt with the specialist. Hopefully I’ll get some answers (and solutions) then. I’m not a very confrontational person but I felt like I had to advocate for myself.
Thanks, I did exactly what you suggested. Unfortunately it didn’t get me much from her. However, I did get her to refer me to a sleep specialist and I hope I’ll have a more productive conversation with them.