Thanks, I will ask these questions when I get my consult at the end of Sep. I'm in Canada so the availability of different machines could be hit or miss, also what's covered/not covered under our gov't healthcare plan.
The lack of email notifications has to be a bug they have just never fixed. Right at the bottom of this page it says:
"You may <unsubscribe> to stop receiving updates for this topic"
I checked my notifications settings and they all indicate that I want to receive emails, but I didn't receive any for this thread that I replied to, or the other one I started.
As I noted above I had to use a backup email account because it wouldn't send to my yahoo mail. I think email for this myapnea.org domain is just configured incorrectly and it has been placed on a bunch of spam blacklists and that is compromising the site's ability to notify people. I mean BWH is part of Harvard, right? They must have at least one techie keener who could tidy it up in a hour or so!
EDIT: Well, that theory was incorrect - I just checked myapnea.org at MXToolbox.com/blacklists and it is fine, not blacklisted at all. So the issue with sending notifications must be somewhere else within the forum software or the mailserver.
Two ideas in your post from a year ago will make a big difference:
don't lock old threads, encourage necroposting....I'm one of those "drive by" users looking for specific help at a specific point in my life and all the relevant topics are 1-3 years old. It would be great if I could post right on them and add to the knowledgebase in context.
send email notifications to posters when there is a reply to their post or on a thread they created. I've been checking back twice a day to see if anyone had advice on what I posted over a week ago, it would be nice to know I'll get a notification.
I would also add the ability to opt-in to receive DMs/direct messages. I wish I could have reached out and directly ping the people who had the same issue as me to find out if/how they solved the problem even if it was several years ago. Most people keep their email addresses for decades now, and likely would respond even if it was a "blast from the past". If they choose to opt-out of DMs or ignore the email that's fine too but even with a 20-30% uptake on DMs you breathe life into the community.
On the upside, I had trouble creating an account because yahoo mail won't deliver messages from this forum, and got pretty much immediate help by emailing firstname.lastname@example.org so someone is interested, listening, and helpful. You should reach out to them with your concerns. As for not being able to use yahoo mail, I had to use a backup hotmail account instead. This is likely a tech issue with the domain and if they properly configure SPF and DMARC for myapnea.org the email issue will go away.
Quick update from OP here - had my sleep test last night, results meeting with doctor is 4 weeks away so I don't know what it showed. In the interim I've been trying the Wim Hof breathing training that was recommended by this link: https://myapnea.org/forum/how-i-cured-my-sleep-onset-transitional-sleep-apnea (user abc123 1 yr ago) and it seems to be working. I've only had two recurrences of gasping awakening right on the cusp of sleep, but it didn' persist for many cycles like it was before, I was able to get to sleep a few minutes later. That poster might have been onto something, my thanks to whomever they are.
Hi all, this is my first post and I'm glad to have found this forum. I have not yet had a sleep test, nor do I have a CPAP machine. I have reached out to my GP to get a referral for a sleep test. I'm hoping to get some context and advice on what is happening to me.
I've been experiencing frightening symptoms for the past few nights which seemed to be described here as "sleep onset transitional central sleep apnea". Exactly at the moment of falling asleep I stop breathing and awaken in terror. It repeats constantly and my nights are now sleepless. Going to bed is becoming a source of dread. The same thing occurs if I try to nap during the day. There is a song called "Sleeping Sickness" by City&Color that eerily describes this (lyrics here: https://www.azlyrics.com/lyrics/cityandcolour/thesleepingsickness.html)
Unfortunately all the threads about on these forums are old and locked, and there is no way to direct message the posters to ask if they were able to solve their problem and how they did it. It's also scary to see they had for months/years when I'm only a few days into this.
The threads I refer to are:
https://myapnea.org/forum/untreatable-sleep-onset-transitional-sleep-apnea (user CharmingDesertSandCoyote0755 "Joe" 3 yrs ago)
https://myapnea.org/forum/sleep-onset-central-sleep-apnea/1#comment-8133 (also CharmingDesertSandCoyote0755 "Joe" 3 yrs ago)
https://myapnea.org/forum/newbie-sleep-onset-apnea (user p3000g 3 yrs ago)
https://myapnea.org/forum/sleep-onset-apnea-01 (user SouthAfrican 2 yrs ago)
https://myapnea.org/replies/27904 (user Velacook 2 yrs ago)
There are 3 "solution" posts that make me hopeful, but they are also very old and aren't definitive about the solutions. One indicates it has to do with the body's mechanism/tolerance for measuring CO2 in the bloodstream and recommends breathing exercises to increase this tolerance:
https://myapnea.org/forum/how-i-cured-my-sleep-onset-transitional-sleep-apnea (user abc123 1 yr ago)
Another one indicates it's caused by long term stress and anxiety which burns out the adrenal gland and causes "Adrenal Fatigue", a condition that is recognized by naturopaths and integrative doctors, but not by traditional allopathic medicine:
The third solution also indicates it is caused by stress and anxiety and recommends supplements as the solution:
My question to the forum is - what is the latest on this? I don't see much since these 2-3yr old posts (my apologies if I've failed Search101). My gut tells me the cause is a combination of the ones I noted - in my case long term stress/anxiety has led me to do relaxation breathing regularly for over a decade and I think I might have trained my body to have a low tolerance for CO2 in my bloodstream because the belly breathing has kept me so well oxygenated for so long. Now when I get to the wake/sleep boundary my body can't tolerate even those few seconds with a higher CO2 level while it waits for my autonomic sleep breathing to kick in, and it pulls the alarm bells to WAKE UP AND BREATHE instead of just holding out a few seconds. I don't know why it would suddenly manifest now, however. I do know my anxiety levels are much higher in recent weeks so perhaps there is a connection there.
Any thoughts? Advice? Suggestions? Any help is greatly appreciated...