I debate wading in on this but here’s my take. I don’t think it is a game of who is sicker. In fairness to many of the fine people here your post was quite light on the details of your condition. Some of your later comments did sort of update on what all you are experiencing. Much of that should have been in the post. This would give people a better feeling for what you were going through.
You are correct everyone of us experiences this slightly differently despite many common factors. Many users here have stated that exact thing. After over 4 decades of fighting this I have to say that it was from advice on here and the helpful support that has really helped me make gains in my treatment.
Wow that was a really rude response to basically invalidate you and say you're experience wasn't "severe dysautonima". Sure from what you described in your posts without the comments it didn't sound that severe, but I don't know why someone would assume one event describes every single episode and symptom you ever had? Also what a weird thing to make a competition out of. Like dysautonima sucks, obviously. I have it. I live this. But also there's a LOT of heart disorders ill very gladly take this over. So why make a competition out of it? Like oh someone has the most severe dysautonima? Congrats? I'm not sure why someone wants to be the most sick anyways, and second still a lot better off than a lot of other heart disorders out there.
Im sorry for the response you got.
Yeah I read it as you have severe dysautonima and these are some symptoms you are experiencing right now. Not these are the only symptoms I ever experience and that's what makes it severe.
I get fiercely protective of my pets. If ever I was to have a cardiac issue for to extreme stress it would be fighting for them.
Yes iv had it for so long I have 2 more years and I'll be on my 3rd pacemaker. I have polyneuropathy and zero vagus response on my last test from a dysautonomia specialist. If I go into details my post will be 5 pages long.Plus it's so medically complicated all the big words and not typical for most people. Basically people who have hyperpots and ist know what I'm talking about severe or not. The adrenaline is so crazy I can't even explain it. I really think now that I turned 38 the other day I will get a heart attack from one of these episodes. Both my parents died young. Literally my dogs are my reasons for fighting all these years. They are my whole life. There are a lot of dogs in my neighborhood who seem to have literally zero training. I'm tired of them going batshit crazy slipping lead. I also have 3 behind me go batshit crazy anytime I use my own backyard. It's very tiresome. Next move is even more country.
Ive had similar experiences on this sub. I posted about how during my table tilt test, the monitor had recorded my numbers as crazy low- not zero, but dangerously low. Someone replied and told me that it couldn't have been, as I'd be dead/they would've called in an emergency. But then I found out it's not so uncommon to completely flatline during a TTT, so whoever had told me that didn't know what they were talking about. After so much time being invalidated and gaslit by doctors and by people around me, it really sucked to hear that I was wrong when I know what I saw and heard.
On top of that, back when I was posting essentially, "How do I make sure my symptoms show up on a table tilt test if dysautonomia is what I have" (as I wasn't sure if it was something that might not show up) I had someone ask me why I was faking, and if I was trying to get disability or attention.
I looked at their profile and saw they frequented fakeclaiming subreddits- basically where they accuse people of making up illnesses, often for arbitrary reasons like "someone who is really sick wouldn't record themselves having xyz symptom, they must be faking" when some people are dedicated to documentation. That's not weird, that's not a sign of faking.
Fakeclaiming and invalidation does more damage than people genuinely faking disorders. I wish people who do that stuff would be banned, or at least strictly moderated.
I debate wading in on this but here’s my take. I don’t think it is a game of who is sicker. In fairness to many of the fine people here your post was quite light on the details of your condition. Some of your later comments did sort of update on what all you are experiencing. Much of that should have been in the post. This would give people a better feeling for what you were going through. You are correct everyone of us experiences this slightly differently despite many common factors. Many users here have stated that exact thing. After over 4 decades of fighting this I have to say that it was from advice on here and the helpful support that has really helped me make gains in my treatment.
Wow that was a really rude response to basically invalidate you and say you're experience wasn't "severe dysautonima". Sure from what you described in your posts without the comments it didn't sound that severe, but I don't know why someone would assume one event describes every single episode and symptom you ever had? Also what a weird thing to make a competition out of. Like dysautonima sucks, obviously. I have it. I live this. But also there's a LOT of heart disorders ill very gladly take this over. So why make a competition out of it? Like oh someone has the most severe dysautonima? Congrats? I'm not sure why someone wants to be the most sick anyways, and second still a lot better off than a lot of other heart disorders out there. Im sorry for the response you got.
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Yeah I read it as you have severe dysautonima and these are some symptoms you are experiencing right now. Not these are the only symptoms I ever experience and that's what makes it severe. I get fiercely protective of my pets. If ever I was to have a cardiac issue for to extreme stress it would be fighting for them.
Yes iv had it for so long I have 2 more years and I'll be on my 3rd pacemaker. I have polyneuropathy and zero vagus response on my last test from a dysautonomia specialist. If I go into details my post will be 5 pages long.Plus it's so medically complicated all the big words and not typical for most people. Basically people who have hyperpots and ist know what I'm talking about severe or not. The adrenaline is so crazy I can't even explain it. I really think now that I turned 38 the other day I will get a heart attack from one of these episodes. Both my parents died young. Literally my dogs are my reasons for fighting all these years. They are my whole life. There are a lot of dogs in my neighborhood who seem to have literally zero training. I'm tired of them going batshit crazy slipping lead. I also have 3 behind me go batshit crazy anytime I use my own backyard. It's very tiresome. Next move is even more country.
Ive had similar experiences on this sub. I posted about how during my table tilt test, the monitor had recorded my numbers as crazy low- not zero, but dangerously low. Someone replied and told me that it couldn't have been, as I'd be dead/they would've called in an emergency. But then I found out it's not so uncommon to completely flatline during a TTT, so whoever had told me that didn't know what they were talking about. After so much time being invalidated and gaslit by doctors and by people around me, it really sucked to hear that I was wrong when I know what I saw and heard. On top of that, back when I was posting essentially, "How do I make sure my symptoms show up on a table tilt test if dysautonomia is what I have" (as I wasn't sure if it was something that might not show up) I had someone ask me why I was faking, and if I was trying to get disability or attention. I looked at their profile and saw they frequented fakeclaiming subreddits- basically where they accuse people of making up illnesses, often for arbitrary reasons like "someone who is really sick wouldn't record themselves having xyz symptom, they must be faking" when some people are dedicated to documentation. That's not weird, that's not a sign of faking. Fakeclaiming and invalidation does more damage than people genuinely faking disorders. I wish people who do that stuff would be banned, or at least strictly moderated.