[Treatment] Apnea causing stroke/TIA, undertreated & gaslighted

[notausername]

Hi all - just joined, I'm a newb, bear with me and I'm happy to be gently guided if I go off track here. Go easy - I've been thru hell.

I'd like to get any suggestions about how to get docs to understand the bigger picture of how apneas and BP may be (have been) interacting to cause severe neurological symptoms.

Context: Started CPAP in 2019; 2023 had a "small" stroke from vertebral artery dissection. Recovered, but had stroke-like TIA's in winter of '23, caused by medication interaction hypotension. Recovered. Spring of '24 had TIA symptoms again. This time it was Covid. This Sept., had ANOTHER set of TIA's, caused by high altitude + dehydration.

ALL were at night. Apnea is a major risk factor for cardio/cerebro-vascular attacks. My BP has been widely variable.

Even though apnea is right there in my chart not a single neurologist, or ER doc at the major medical institutions I've been to paid any attention to it. Sleep docs are looking at one-night study summaries, AHI's and dismissing any concerns that apnea is probably a major contributor to hypoxia and hopefully-transient neurological attacks.

One sleep doc told me : "a single night's AHI (it was 10) doesn't mean anything; your overall AHI is 3" -- but the research at NIH comes right out and says an overall AHI is a useless predictor. I just saw a tertiary-care sleep doc who said "your (one-night) study showed no CA, and few hypopneas" - ignoring the fact that all it takes is one bad luck combination of apnea event and hypotension and/or other reduction in perfusion, and I could be crippled or dead.

I can share some OSCAR data but wanted to put my toes in the water with this and see what folks think. If nothing else, I hope you'll get it that the apnea issue as part of an overall picture is serious business. I'm just livid, and fearful that this run-of-the-mill approach to treatment I'm getting is going to get me seriously hurt.

Anybody? Anything you can suggest, something I can do? Is there a particular set of graphs I should share?
Thank you!!

[Expat31]

Hi,

A good starting point would be to post the following 5 graphs.

1.Events
2.Flow rate
3.Pressure
4.Leak rate
5.Flow limitations 

Also make sure the calendar is excluded as it will obscure the visibility of statistics and settings. 

We can then hopefully start to see what is going on and provide some of the information you need.

Footnote:-

Some guidance on Attaching images, files and posting charts, and Oscar chart organisation.

[notausername]

Thank you for the reply!

Here's the basic chart display you mentioned, for Oct 29-30, and 30-31

When I look at tidal volume, resp rate, etc. what I see really concerns me but I wait for your feedback.
On 10/31 The events at 02:30 (approx) and 07:15 are really disturbing - I didn't wake at those times. Or is it possible my clock is off? I don't think mask jiggering would cause hypopneas like that, but I'm just getting started with all this.

Thoughts very much appreciated

PS: the earliest part of the 10/30-31 graph is an afternoon nap.

   
   

[Expat31]

Thanks, but you are showing your graphs using the events tab, instead of the details tab, which is directly to the left of the events tab.

This will now show the key therapy parameters.

All that can be gleaned so far are some positional apneas, and perods of high flow limitations. We can examine these eventually with the details view (as indicated above).

[notausername]

Gotcha - Guess I missed that part of the docs.
Here's last night. I just wonder if those are all real hypopneas?

Seems weird that they are all from 2:40 to 5:00, when I got up to go the bathroom - before and after was fine. Bad mask fit? I tightened it, but ...   I dunno! If there's something physiological, yuck.

I thought I turned off ramp, also. But there it is.

Thanks in advance again!


   

[coutherino]

Hi. Just wanted to chime in. Sorry to hear about all the issues you've been having. I rolled my eyes when I read the comment about your AHI only being 3 by your sleep doc. Just so many misconceptions in that one statement, and to be coming from a literal sleep doctor lmao. I must admit, you're probably not going to have much luck convincing any doctors that your apnea may be tied to your other health issues if their immediate response is to go "everything looks great, your AHI is below 5!" There are good sleep doctors out there though, ones that understand that AHI, and indeed even RDI are entirely useless for measuring the actual severity of a patient's sleep disordered breathing, and how it may be affecting their health in other ways. Gasping for air all night is obviously incredibly stressful on your body.

Out of curiosity, what about your tidal volume and respiratory rate concerns you? As for the events at 2:30 and 7:15, they do seem to be true, and are almost certainly positional like Expat31 said. For most people, sleep disordered breathing becomes much worse on their back, which is likely what you switched to at those times. I'd highly recommend trying to not do that. The reason you're able to tell there is (at least some form of) true obstruction going on is because there's lots of corresponding flow limitation, which is the graph at the bottom. All flow limitation is, is a measuring of the flattening of the waveform of your breath, as shown in your flow rate graph (which is by far the most important graph). The flow limitation graph is sort of like a representation of what your individual breaths look like. It doesn't tell the whole story, but if it's there in large quantities it means something is probably wrong. All that applies to your most recent screenshot, between 2:40 and 5:00. It looks very positional too. You said you got up to use the bathroom before, I'd assume when you laid back down you just stayed on your back. If you took some zoomed in screenshots of those areas where flow limitation is high and events are being tagged the most, maybe 4-5 minutes, it'd be much easier to tell what specifically is happening.

Also, you mentioned that you had turned ramp off, but I'd definitely recommend making sure it is actually off.

[Expat31]

Hi,

Your graphs are just about  perfect. It is really helpful to see these graphs together on one page, we can easily observe their interrelationships.

What I see is the primary issue is in fact, as previously surmised, is positional apnea. This should be relatively straightforward to solve. 

To start with, there are several causes provoking  positional apnnea.

The trachea gets crimped or kinked out of alignment, either partially or fully, impeding the flow of air to the lungs. This is often caused by the chin dropping towards the chest, either in the supine position, or in the side sleeping (foetal) position. 

Also large pillows can push the head forwards towards the chest also.

Another possibility is during  REM sleep, when the body becomes semi paralysed and muscle tone is lost, the tongue can fall back against the pharynx wall, blocking the airway. 

A simple demonstration of supine positional apnea (video) gives some idea of what can happen.

The solutions to the above are well known:-
    - Using a soft cervical collar to straighten out the airflow path. 
    - Slimmer pillow to keep the head further back. 
    - Or simply avoiding supine sleeping.

This may help you also- sleeping positions & pillow adjustments (video Mayo)

Your respiration graph looks normal to me, however,  I cannot venture an opinion on your settings, as I use just a CPAP/APAP machine. Others can chime in and give excellent advice for your machine type.

I have major cardio issues also. I monitor my pulse and ODI (oxygen desaturation index) with a a pulse oxymeter, compatible with OSCAR.

That's about as far as I can go, the bi-level machine guys I am sure will be along soon.

Hope this helps.

[SarcasticDave94]

Besides the Ramp needing turned off, you likely need to read our wiki on Positional Apnea. Those clusters of events are very likely you tucking your chin towards your chest, kinking off your airway externally.

This chin tuck may be blocked physically maybe with a corner of your pillow under the chin. Make sure your pillow is thin enough and not a stack of several. If this fails to help, you'll need to consider a soft cervical collar to block this chin tuck.

Links to both Positional Apnea and the soft cervical collar info below.

https://www.apneaboard.com/wiki/index.ph...onal_Apnea

https://www.apneaboard.com/wiki/index.ph...cal_Collar

[notausername]

OH
MY
GOD.

I have one of those inflatable travel pillows, turned it around so it propped up my jaw.
I ditched my pillow and used a little fleece blanket folded a couple of times.


Now that my jaw is not propped up this morning, it's dropping to the floor at the difference this made.
No scary drops in volume or RR.
Instead of the usual 3 to 5 bathroom trips, I had one wakeup. 
When I got up this morning I wasn't wobbly on my feet. 
I'm speechless.


It's only a single data point so far, but I don't think any of my sleep graphs for the last year and a half look anything like this one.
It will take a few nights to see if this continues but this is amazing


so much for this board, and SarcasticDave, Expat and Coutherino (I owe you an RSVP for some of your comments but I have to go ATM.)

If this persists through the next 3-5 day's I'm going to throw a party for you.

[SarcasticDave94]

OK it's getting better. No sarcasm, you'll need to consider targeting those flow limit shaggy areas, unless this was times that little blocker pillow wasn't working helping out.

Settings to edit now will be sliding your pressure range upwards in whole or fractional steps as you see fit comfortably. I probably wouldn't add to the PS myself.

Translation: on the ResMed, whole step equals cmH20 of 1.0 per click, fractional are steps in frequency of .2