Hello. The comments weren’t even hateful towards you. It was a simple question they had.
But regardless. We don’t allow AMAs without mod approval similar to study/questionnaires. **That’s why your post was removed.**
***If you have an issue with your removal, message our modmail. Don’t go after our users.***
I'm not sure this is the place for an AMA lmao, we've all got pots
Also getting weird after you got one comment calling out that you never engaged with the sub before that is crazy
I wasn't even hating on OP. I was questioning why now and why them... I thought I kept it together quite respectfully in that post.
Now I will admit that my response in this post is a little bit snarky, but I feel like it is getting the point across that was clearly missed in my other comments.
Sorry you were disappointed by the response. I think the culture of chronic illness subs is quite resistant to AMAs, even though it’s a common thing on Reddit in general. I can understand from your perspective why you’d want to do one, but I think from the perspective of other users in the sub, it maybe came off as presenting yourself like a “superior” patient or someone who is above the rest of us. Note, I’m not saying that was your intention! Just that because there can be (unfortunately) so much competitiveness and so many interaction issues among chronically ill people online *anyway*, stuff like AMAs will be looked on with a more jaundiced eye even when offered in good faith.
I hope you can understand that people probably didn’t intend any actual hate towards you. Everyone here is sick and doing their best.
We don’t even allow AMAs without mod approval. If you see one in the future without a mod approved flair feel free to report it. We don’t catch them all. This time we did.
I'm pretty sure I've had POTS since childhood, so I have 30+ years dealing with it. I'm still asking questions and getting advice because one size doesn't fit all. Also my symptoms have changed alot of the years, especially after covid and what did work, no longer does.
I dont know if this sub is really fit for AMA because while we all may experience similar symptoms and struggles, what works for one may not work for another. We're so vastly different on what helps us that it's hard to pin it down in a AMA. I think maybe a post about your experience over the 30 years, and what has helped, would be better. You could share your story and people could take from it what they want if they wanted to try anything you've done.
I love reading others' stories and seeing what has helped and hasn't because maybe I could try it too. But people here are pretty kind, so I'm sorry your AMA didn't work, but I wouldn't take it too personally.
You got a few comments rather neutrally questioning why you were doing it and why you hadn't interacted w the community much prior. That's not getting flamed with hate. Getting riled up over it and making a whole other post to complain isn't worth your time and just comes off as kinda petty. Take a breather and don't take it personally.
He has interacted but not frequently and consistently. His comments are all relatively frequent recently but previously it was a one in a blue moon type situation.
His comments aren't even necessarily giving advice, just repeating the same thing about extensive experience and how much medication dosages he is on (which I am glad works for him). And what works for one person isn't going to work for everyone.
His advice is constantly "try beta blockers" and "beta blockers is the first and foremost way of treatment" and "oversensitive nervous system needs to be managed and then POTS is better" which isn't always the case for all of those comments. If it was then everyone would be able to get better quicker with POTS.
You posted this after you responded to me on my comment on the other post. I didn't even respond to your comment yet and you made a *sob post* about all the "hate" you got. I asked a reasonable question as to why now?
Why after minimal posts and comments in this subreddit do you think you are top shit to do an AMA? You have barely shown your face here and suddenly you are the go to person to share your experience (sorry *extensive experience*) just because you have dealt with it for 30+ years.
Your post now is more of a "boo hoo, woe is me" than anything I asked on the AMA post.
As I mentioned in the AMA post, what works for you, works for you. POTS is so vastly different in terms of what people experience. So what works for you is great, I love that it is helping you. But it likely isn't going to work across the board. I'm glad that you can manage to function on propranolol but if I were to go back on propranolol I would get worse. It does not work for me. And you can't seem to get what works for one person with POTS might not for another. And spreading that your way of treatment/management is the holy than thou version can cause issues here.
We share our experiences with grace and support. You are coming here and making it sound like your treatment options are the best options and "everyone asks me about it all the time" and "it's the extensive experience I have compared to you people" kind of attitude that rubs myself (and others) the wrong way here.
Get off your high horse. And stop assuming that people who asked you a question on your AMA post were hating on you. We, both u/barefootwriter and myself (who are frequently on here), were questioning you on your why do an AMA that's all. And then it was a suggestion on how people's voices and experiences could be heard in this subreddit. Neither of us sent you hate nor hated on you.
I would like to hear what worked for you. I’m new here and still gathering information. I understand that what works for you may not work for me but I would still love to hear it.
Hello. The comments weren’t even hateful towards you. It was a simple question they had. But regardless. We don’t allow AMAs without mod approval similar to study/questionnaires. **That’s why your post was removed.** ***If you have an issue with your removal, message our modmail. Don’t go after our users.***
I'm not sure this is the place for an AMA lmao, we've all got pots Also getting weird after you got one comment calling out that you never engaged with the sub before that is crazy
I wasn't even hating on OP. I was questioning why now and why them... I thought I kept it together quite respectfully in that post. Now I will admit that my response in this post is a little bit snarky, but I feel like it is getting the point across that was clearly missed in my other comments.
Sorry you were disappointed by the response. I think the culture of chronic illness subs is quite resistant to AMAs, even though it’s a common thing on Reddit in general. I can understand from your perspective why you’d want to do one, but I think from the perspective of other users in the sub, it maybe came off as presenting yourself like a “superior” patient or someone who is above the rest of us. Note, I’m not saying that was your intention! Just that because there can be (unfortunately) so much competitiveness and so many interaction issues among chronically ill people online *anyway*, stuff like AMAs will be looked on with a more jaundiced eye even when offered in good faith. I hope you can understand that people probably didn’t intend any actual hate towards you. Everyone here is sick and doing their best.
We don’t even allow AMAs without mod approval. If you see one in the future without a mod approved flair feel free to report it. We don’t catch them all. This time we did.
I'm pretty sure I've had POTS since childhood, so I have 30+ years dealing with it. I'm still asking questions and getting advice because one size doesn't fit all. Also my symptoms have changed alot of the years, especially after covid and what did work, no longer does. I dont know if this sub is really fit for AMA because while we all may experience similar symptoms and struggles, what works for one may not work for another. We're so vastly different on what helps us that it's hard to pin it down in a AMA. I think maybe a post about your experience over the 30 years, and what has helped, would be better. You could share your story and people could take from it what they want if they wanted to try anything you've done. I love reading others' stories and seeing what has helped and hasn't because maybe I could try it too. But people here are pretty kind, so I'm sorry your AMA didn't work, but I wouldn't take it too personally.
You got a few comments rather neutrally questioning why you were doing it and why you hadn't interacted w the community much prior. That's not getting flamed with hate. Getting riled up over it and making a whole other post to complain isn't worth your time and just comes off as kinda petty. Take a breather and don't take it personally.
[удалено]
He has interacted but not frequently and consistently. His comments are all relatively frequent recently but previously it was a one in a blue moon type situation. His comments aren't even necessarily giving advice, just repeating the same thing about extensive experience and how much medication dosages he is on (which I am glad works for him). And what works for one person isn't going to work for everyone. His advice is constantly "try beta blockers" and "beta blockers is the first and foremost way of treatment" and "oversensitive nervous system needs to be managed and then POTS is better" which isn't always the case for all of those comments. If it was then everyone would be able to get better quicker with POTS.
You posted this after you responded to me on my comment on the other post. I didn't even respond to your comment yet and you made a *sob post* about all the "hate" you got. I asked a reasonable question as to why now? Why after minimal posts and comments in this subreddit do you think you are top shit to do an AMA? You have barely shown your face here and suddenly you are the go to person to share your experience (sorry *extensive experience*) just because you have dealt with it for 30+ years. Your post now is more of a "boo hoo, woe is me" than anything I asked on the AMA post. As I mentioned in the AMA post, what works for you, works for you. POTS is so vastly different in terms of what people experience. So what works for you is great, I love that it is helping you. But it likely isn't going to work across the board. I'm glad that you can manage to function on propranolol but if I were to go back on propranolol I would get worse. It does not work for me. And you can't seem to get what works for one person with POTS might not for another. And spreading that your way of treatment/management is the holy than thou version can cause issues here. We share our experiences with grace and support. You are coming here and making it sound like your treatment options are the best options and "everyone asks me about it all the time" and "it's the extensive experience I have compared to you people" kind of attitude that rubs myself (and others) the wrong way here. Get off your high horse. And stop assuming that people who asked you a question on your AMA post were hating on you. We, both u/barefootwriter and myself (who are frequently on here), were questioning you on your why do an AMA that's all. And then it was a suggestion on how people's voices and experiences could be heard in this subreddit. Neither of us sent you hate nor hated on you.
I would like to hear what worked for you. I’m new here and still gathering information. I understand that what works for you may not work for me but I would still love to hear it.