New Central Sleep Apnea diagnosis, Ontario veteran

[JanaS]

Hi all!
My first post!

I was just diagnosed with severe central sleep apnea, with most events being hypopnea.

I’m a veteran with Sunlife coverage.

I noticed that OHIP doesn’t cover ASV (yay *eye roll*).

I’m worried I’m going to be thrown a CPAP and it won’t help or will make things worse.

Anyone know of any sleep clinics in Ontario that are well versed in central apnea and will do ASV testing it I fail CPAP titration? Do sleep clinics in Ontario even do titration testing?

Any help would be really appreciated.

Thank you!

[JanaS]

here’s the data from my study

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More…

[Sleeprider]

This clearly calls for an honest discussion of the issue with your doctor including the path to ASV in Ontario. We can help you find relatively affordable ASV therapy and get you setup for effective treatment if the provincial health system turns out to be a dry hole. I have no doubt they will trial CPAP, and that will fail. I think you need to have a forward-looking discussion to see what happens after that. Used ASV machines are available on the Dotmed marketplace. You will need to search the Respiratory/Bilevel devices and filter for Resmed. We often see the Resmed S9 VPAP Adapt 36007 and Aircurve 10 ASV at reasonable prices.

It may be very difficult to get an ASV machine in Ontario, as they are not covered by the Assistive Devices Program. If you want to pursue an out-of-pocket solution, we will do our best to help. I just don't see a better alternative since no one in Ontario has ever had central or complex apnea, so the social medical network does not treat it.

[SarcasticDave94]

Welcome to the Apnea Board,

I can't comment on Canadian health aspects, but keep looking in this thread. Other members will have some direction.

As for the study results, 10 Central and a lot of Hypopnea, either type as they didn't separate them. With zero Obstructive Apnea, I'm going to say the Hypopnea had about half CA, at least. So yes a ResMed AirCurve 10 ASV is your friend of choice. And a 9 series ASV is still a good option.

[JanaS]

Thank you thank you thank you!

It's so weird. I'm really curious about what the underlying cause is for me.

Thank you so much for the device suggestion!!!!!!!!

[Gideon]

I'm surprised at the diagnosis of Central Sleep Apnea. Likely correct, but at least you don't have to fight for that diagnosis

I hate assumptions. Right now we are advising under the assumption that yo have no other cardio, pulmonary, or neurological conditions. If you do that could change the choice of machine, right Dave (he falls into that category). So do you. Strokes, seizures, neuromuscular diease? COPD, herat failure asthma, etc? Pain meds, especially opioids, synthetic or otherwise.
No judging here but any of these can impact your treatment. I'm not expecting anything
Any theories as to the origin of cause of your centrals?

[JanaS]

Hi Gideon,
Thanks for the reply!
The report that I posted didn't actually specify central apnea, it just said "Severe sleep apnea"... I looked at the data and all my apnea events are central, although the hypopnea doesn't specify what type.

Since my vaccines in June/July I have had significant heart symptoms. Shortness of breath, arrhythmia, POTS, chest pain, what feels like circulation issues
(I'm cold a lot), edema in my hands and feet, nystagmus (all of these things were rapid onset after my vaccine). So I really believe I might have vaccine induced cardiac issues.

I asked my doc for a referral to cardiology and she said "not necessary", so I booked an appointment with one of the virtual walk in clinics and asked them to refer me to cardiology. So they did. I haven't had a response yet to even know that they've accepted my referral.

My family doc did order one of the short like 15 second ECGs at the blood lab, which came back normal... not surprised.

I haven't seen the sleep doc yet, just did the overnight study at the hospital.

No history of opioid use.

I have history of head injuries. I think I might have craniocervical instability. I'm going to ask for a referral to a neurologist. My sleep got really bad after my first really bad head injury in 2014. I asked for a sleep study then, but all they did was overnight take home pulse oxymetry which came back normal at the time.

I'm 34... so I have had a lot of experiences of being dismissed by the medical system because "I'm too young" to be having these problems... total BS.

Genetic disposition to high LDL and heart issues so also worried based on that...

Thanks for responding!

[Gideon]

You are likely to be put on a CPAP machine. The CPAP you want is the ResMed AirSense 10 AutoSet for her. The for her is important since the Ontario has misclassified this APAP as a CPAP.
With 10 central events your Central Apnea Index will be about 5% of the total of 46
So about 2.3 CAI, enough to watch but not be overly concerned with. Yes, as Dave points out a considerable amount of your hypopneas could be central, but we don't know. This will give us a better idea.


MinPressure=7 (most likely they will set it lower, change it to 7
EPR =3, fulltime, this will treat the RERAs, hypopneas, and flow limits, and you have plenty of all of these
Max pressure=15, doesn't matter too much 15 will keep high pressures in check and we will suggest modifications as appropriate. I expect your events will drive pressure to the max value.
Note: you need your min pressure at 7 so the EPR at 3 has room to work. Your low pressure will be at the machines low of 4.

Post after 1 night for review and adjustment.

[SarcasticDave94]

Yes, other medical conditions that are connected to Apnea, breathing, heart, may change our mind on ASV. But all is conditional at this time that the CA are enough to warrant ASV if again medically clear otherwise.

And I'll say this, using myself as the example, unless your other conditions are severe, like congestive heart failure, then ASV should still be a go.

The other condition thing is why I can't use ASV. My other is COPD. But I have a heart condition called premature ventricular contractions that is not preventing my ASV use, but COPD does.

JanaS you have to fill in the blanks for yourself as applicable. Feel free to ask us here and we'll do it best to help out.

A few pointers on Central Apnea
1. CA are consistently inconsistent, and we're after feeling better regardless of numbers.
2. The stats are used to measure the data that's happening when we state were feeling better to help notice trends.
3. Zero events isn't the goal, well rested is.
4. Here we're not too concerned about why you have Centrals, just the correct treatment. Why you have CA is a bit of a rabbit hole.

[Gideon]

Your head injuries MAY, only may be a concern going forward. You mention an "I think I might have craniocervical instability". By any chance were you using a cervical collar during your sleep study? I suspect the answer is no. Do you have a cervical collar for your craniocervical instability?

The clustering of the hypopneas during your sleep study is indicative of a form of cervical instability that we here refer to as a positional apnea resulting from "tucking" your chin, but the tuck could be in any direction.

If my suspicions are correct you may not need a CPAP of any kind, and just wear a collar at night. The only way to absolutely prove this would be another diagnostic sleep study while wearing a properly fitted soft cervical collar. I would in this case, because of your suspicion of a craniocervical instability, to get the opinion of your cervical AND neurologist on collar type and fit so as to not inadvertently cause any nerve issues. WE do NOT know if you have any neck issues that would require a special device. As a former EMT I would have no problem with the temporary use of a collar for transport.

Bottom line, I really believe your neck alignment may be a very significant contributor to your apnea. Please discuss this with your medical team.