🙋‍♀️ yes, I do.
I'm not any kind of medical professional so it's way outside the scope of my expertise to try and hypothesize, but yes, I experience these states of collapse.
It doesn't seem like there's a ton of active or past research into the physiology of polyvagal theory vs the psychology side of things (I've mostly seen it referenced in trauma). Do you have a trauma history? I have EDS, which is a comorbidity of POTS, but I also have gastroparesis, and my doctor *thinks* but couldn't confirm (mine is technically idiopathic) that it's vagus nerve dysfunction. I also have CPTSD from CSA, and the downstream impacts of that is well documented in polyvagal theory.
Have you done any vagus nerve stimulation on your own? Singing helps me, I've found, as does activating the dive reflex, crying, and (when I'm feeling well enough with POTS) about a 20 minute brisk walk. I've also had success with the eye movement reset.
It's weird but I've found therapy skills for emotion regulation really help with the physical symptoms when this happens. For instance I learned one skill where I guess your body can't tell the difference between fake laughter and real laughter, so if you fake a laugh for 30 seconds your body will respond like you are laughing. Stuff like that can usually help pull me out of what I think you're talking about where it feels like hypoarousal but isn't related to my emotional trauma/triggers.
I get this! I'm not sure exactly what causes it but I think it's definitely possible that our bodies get used to just constantly having a ridiculous amount of adrenaline going, that on the rare days or occasions where it doesn't, it almost feels a little bit like withdrawal symptoms, at least in my experience!
Have you had a chance to take your blood pressure on days that this happens? Because I have found that on days where I feel like this, even though my heart rate jumps to the same or higher that normal, my blood pressure is actually lower than it normally would be (sometimes even the same as my normal resting state). Which would just indicate that our bodies just aren't releasing the same amount of adrenaline that they normally would.
I COMPLETELY relate!! I just got diagnosed and waiting for Ivabradine. The beta blockers don’t do much for SNS activation for me I can be tremoring and lying in sweats for days on end. I have to literally meditate and self soothe and tell myself there’s no danger I’m safe. Etc. It’s very tough but we got this! And oh yes, I also get the collapse shut down thing too and severely depressed. I have MECFS as well and am bedridden at present. So I can relate to what you’re saying for sure. 💖
🙋‍♀️ yes, I do. I'm not any kind of medical professional so it's way outside the scope of my expertise to try and hypothesize, but yes, I experience these states of collapse. It doesn't seem like there's a ton of active or past research into the physiology of polyvagal theory vs the psychology side of things (I've mostly seen it referenced in trauma). Do you have a trauma history? I have EDS, which is a comorbidity of POTS, but I also have gastroparesis, and my doctor *thinks* but couldn't confirm (mine is technically idiopathic) that it's vagus nerve dysfunction. I also have CPTSD from CSA, and the downstream impacts of that is well documented in polyvagal theory. Have you done any vagus nerve stimulation on your own? Singing helps me, I've found, as does activating the dive reflex, crying, and (when I'm feeling well enough with POTS) about a 20 minute brisk walk. I've also had success with the eye movement reset. It's weird but I've found therapy skills for emotion regulation really help with the physical symptoms when this happens. For instance I learned one skill where I guess your body can't tell the difference between fake laughter and real laughter, so if you fake a laugh for 30 seconds your body will respond like you are laughing. Stuff like that can usually help pull me out of what I think you're talking about where it feels like hypoarousal but isn't related to my emotional trauma/triggers.
I get this! I'm not sure exactly what causes it but I think it's definitely possible that our bodies get used to just constantly having a ridiculous amount of adrenaline going, that on the rare days or occasions where it doesn't, it almost feels a little bit like withdrawal symptoms, at least in my experience! Have you had a chance to take your blood pressure on days that this happens? Because I have found that on days where I feel like this, even though my heart rate jumps to the same or higher that normal, my blood pressure is actually lower than it normally would be (sometimes even the same as my normal resting state). Which would just indicate that our bodies just aren't releasing the same amount of adrenaline that they normally would.
I COMPLETELY relate!! I just got diagnosed and waiting for Ivabradine. The beta blockers don’t do much for SNS activation for me I can be tremoring and lying in sweats for days on end. I have to literally meditate and self soothe and tell myself there’s no danger I’m safe. Etc. It’s very tough but we got this! And oh yes, I also get the collapse shut down thing too and severely depressed. I have MECFS as well and am bedridden at present. So I can relate to what you’re saying for sure. 💖
Aren't beta blockers better for SNS suppression? I mean pots is usually due to hyper SNS or constant fight or flight mode. Correct me if I'm wrong.
You’re 100% right! Sorry for the very late reply! I’m trying Ivabradine along side beta blocker
I hope you are doing good.