1 hour ago
Apnea causing stroke/TIA, undertreated & gaslighted
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!!
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!!
