I was a healthy 29yr old when I got it in early 2020. A few weeks later, I developed what I thought were panic attacks. Doctors kept saying I had anxiety. I went to the ER multiple times, saw cardiologists, went through 2 holter monitors and nothing. No answers. Finally, over a year later while on a road trip I had another flare up. My HR was in the 200’s and another ER doctor was trying to tell me again that it was just anxiety. I had to yell at him mid attack and advocate for myself before he finally put down on my discharge paperwork “presumed POTS.” Finally the next cardiologist I saw took me seriously. Still dealing with symptoms over 2yrs later but at least I know how to manage it better. COVID is no joke. Thank you for creating this film. You’re great people!
Bo Riley thanks for watching! I’m so sorry to hear about all you’ve been going through. If you haven’t already, go check out our interview with Dr. Chung (Director of the POTS clinic at John’s Hopkins) where we dive deeper into POTS and what’s causing all those crazy symptoms. Here’s a direct link to the film: What is POTS syndrome? Dr. Chung explains | Covid-19 Survivor Diaries Extended Interview ruclips.net/video/cNz1r_adHX0/видео.html We’re planning to do another episode focused on POTS later on - maybe in May - so stay tuned and hang in there!
My heart goes out to everyone affected by disautonomia, it's really frustrating, debilitating and miserable. I'm currently 1 1/2 yrs into my struggles with it after having covid. My neurologist ruled out pots, but I'm waiting to see a disautonomia specialist to hopefully get treatment. Unfortunately, my neurologist doesn't even know of any long covid clinics in CA that are taking patients with dysautonomia or symptoms thereof. I try to stay hopeful that I will get better, but I'm really struggling and losing faith in the medical community after being passed from one specialist to another with literally no diagnosis, treatment, or forward motion. 😢 💔
Thank you Deanna Marsala for watching! I’m so sorry for all you are going through. Navigating healthcare in America is not easy. I think you'd find this interview with Dr. Shikhman helpful. He is a rheumatologist and functional medicine doctor in Southern California and talks about how Covid possibly activates or reactivates hidden infections: ruclips.net/video/tM2eX6MooRg/видео.html There is a link to his practice in the caption if you are interested in reaching out to him.
THANK YOU! I’ve been in multiple circles of doctors and getting nowhere. Helplessly tired of being handed random drugs with no diagnosis. Long waits for appointments and being told it’s all anxiety. Symptoms are random, scary and very real. It’s been a 2 year struggle. At times it’s debilitating but I will always be determined. You are acknowledged and appreciated. I hope these stories and your humanitarian investigations enlighten the medical community and reassure those who are victimized by this virus. Survivor 101- Believe!
Stacy Arrieta thanks for watching and for your encouragement!! I’m sorry to hear how hard it has been but you are not crazy and what you’re dealing with is very real. If you haven’t already, go check out our interview with Dr. Chung (Director of the POTS clinic at John’s Hopkins) where we dive deeper into POTS and what’s causing all those crazy symptoms. Here’s a direct link to the film: What is POTS syndrome? Dr. Chung explains | Covid-19 Survivor Diaries Extended Interview ruclips.net/video/cNz1r_adHX0/видео.html
I've had EDS and autonomic issues and symptoms since I was a teenager, but no one knew what was wrong with me. Now I know! I'm almost 40 years old....it took me this long to find people who knew what was happening to me.
Very similar to Melissa’s story (and many others we’ve heard). The same thing happened to Cheryl in our episode on post-Covid ME/CFS. It seems like for a lot of people EDS gets worse as they get older. Glad you finally know what’s happening!
Thank you for bringing to light what those of us with post COVID dysautonomia/POTS are dealing with every day. Tomorrow will be 2 years since my COVID diagnosis. I am grateful to have Dr Chung in my corner as I try to navigate my way thru this “new” life living as a long hauler.
Thank you so much!! Dr. Chung is great. If you don’t mind, please help us share this films with others so we can spread more awareness about what people are going through. This is a grassroots project and we need all the help we can get.
Thank you for doing this. There’s some comfort in knowing I’m not alone. It has been a year for me. My life has been on hold for the last year, as well as my husband’s. Doctors have not helped at all. It feels like we’re on our own.
Kristy Gall thanks for watching! And for your encouraging words. If you haven’t already, go check out our interview with Dr. Chung (Director of the POTS clinic at John’s Hopkins) where we dive deeper into POTS and what’s causing all those crazy symptoms. Here’s a direct link to the film: What is POTS syndrome? Dr. Chung explains | Covid-19 Survivor Diaries Extended Interview ruclips.net/video/cNz1r_adHX0/видео.html We’re also planning on doing an episode on POTS in May. Otherwise, come back next week for an episode on COVID’s impact on pregnancy!
12-20-1963 my little sister was born. Later we learned she has ESD. She struggled for 54 years with it. I wonder if I have it also. I wonder if this is why my sleeping a lot, brain freeze, and low heart rate are part of my new normal. I just continue to wonder.
Common Thread? Most of us have been dismissed as having anxiety during the Pandemic (which makes sense...I get it) Most of Us aren't anxiety ridden OR neurotic. C'mon health community...we DESERVE BETTER.
I was a healthy 29yr old when I got it in early 2020. A few weeks later, I developed what I thought were panic attacks. Doctors kept saying I had anxiety. I went to the ER multiple times, saw cardiologists, went through 2 holter monitors and nothing. No answers. Finally, over a year later while on a road trip I had another flare up. My HR was in the 200’s and another ER doctor was trying to tell me again that it was just anxiety. I had to yell at him mid attack and advocate for myself before he finally put down on my discharge paperwork “presumed POTS.” Finally the next cardiologist I saw took me seriously. Still dealing with symptoms over 2yrs later but at least I know how to manage it better. COVID is no joke. Thank you for creating this film. You’re great people!
Bo Riley thanks for watching! I’m so sorry to hear about all you’ve been going through. If you haven’t already, go check out our interview with Dr. Chung (Director of the POTS clinic at John’s Hopkins) where we dive deeper into POTS and what’s causing all those crazy symptoms. Here’s a direct link to the film: What is POTS syndrome? Dr. Chung explains | Covid-19 Survivor Diaries Extended Interview
ruclips.net/video/cNz1r_adHX0/видео.html
We’re planning to do another episode focused on POTS later on - maybe in May - so stay tuned and hang in there!
How do you manage it? Beta blockers?
My heart goes out to everyone affected by disautonomia, it's really frustrating, debilitating and miserable. I'm currently 1 1/2 yrs into my struggles with it after having covid. My neurologist ruled out pots, but I'm waiting to see a disautonomia specialist to hopefully get treatment. Unfortunately, my neurologist doesn't even know of any long covid clinics in CA that are taking patients with dysautonomia or symptoms thereof. I try to stay hopeful that I will get better, but I'm really struggling and losing faith in the medical community after being passed from one specialist to another with literally no diagnosis, treatment, or forward motion. 😢 💔
Thank you Deanna Marsala for watching! I’m so sorry for all you are going through. Navigating healthcare in America is not easy.
I think you'd find this interview with Dr. Shikhman helpful. He is a rheumatologist and functional medicine doctor in Southern California and talks about how Covid possibly activates or reactivates hidden infections: ruclips.net/video/tM2eX6MooRg/видео.html
There is a link to his practice in the caption if you are interested in reaching out to him.
@@SurvivorDiariesOfficial Thank you ❤️
how are you doing now?
THANK YOU! I’ve been in multiple circles of doctors and getting nowhere. Helplessly tired of being handed random drugs with no diagnosis. Long waits for appointments and being told it’s all anxiety. Symptoms are random, scary and very real. It’s been a 2 year struggle. At times it’s debilitating but I will always be determined.
You are acknowledged and appreciated. I hope these stories and your humanitarian investigations enlighten the medical community and reassure those who are victimized by this virus.
Survivor 101- Believe!
Stacy Arrieta thanks for watching and for your encouragement!! I’m sorry to hear how hard it has been but you are not crazy and what you’re dealing with is very real.
If you haven’t already, go check out our interview with Dr. Chung (Director of the POTS clinic at John’s Hopkins) where we dive deeper into POTS and what’s causing all those crazy symptoms. Here’s a direct link to the film: What is POTS syndrome? Dr. Chung explains | Covid-19 Survivor Diaries Extended Interview
ruclips.net/video/cNz1r_adHX0/видео.html
I've had EDS and autonomic issues and symptoms since I was a teenager, but no one knew what was wrong with me. Now I know! I'm almost 40 years old....it took me this long to find people who knew what was happening to me.
Very similar to Melissa’s story (and many others we’ve heard). The same thing happened to Cheryl in our episode on post-Covid ME/CFS. It seems like for a lot of people EDS gets worse as they get older. Glad you finally know what’s happening!
You can watch Cheryl’s story here: Post-Covid ME/CFS | Covid-19 Survivor Diaries Episode 12
ruclips.net/video/ndQc_SAkk54/видео.html
Thank you for bringing to light what those of us with post COVID dysautonomia/POTS are dealing with every day. Tomorrow will be 2 years since my COVID diagnosis. I am grateful to have Dr Chung in my corner as I try to navigate my way thru this “new” life living as a long hauler.
Thank you so much!! Dr. Chung is great. If you don’t mind, please help us share this films with others so we can spread more awareness about what people are going through. This is a grassroots project and we need all the help we can get.
Thank you for doing this. There’s some comfort in knowing I’m not alone. It has been a year for me. My life has been on hold for the last year, as well as my husband’s. Doctors have not helped at all. It feels like we’re on our own.
So sorry to hear that!! You're definitely not the only one. We've talked to so many in the same boat.
Thanks
Bless you!!
What an amazing video. Thank you for creating it.
Kristy Gall thanks for watching! And for your encouraging words. If you haven’t already, go check out our interview with Dr. Chung (Director of the POTS clinic at John’s Hopkins) where we dive deeper into POTS and what’s causing all those crazy symptoms. Here’s a direct link to the film: What is POTS syndrome? Dr. Chung explains | Covid-19 Survivor Diaries Extended Interview
ruclips.net/video/cNz1r_adHX0/видео.html
We’re also planning on doing an episode on POTS in May.
Otherwise, come back next week for an episode on COVID’s impact on pregnancy!
12-20-1963 my little sister was born. Later we learned she has ESD. She struggled for 54 years with it. I wonder if I have it also. I wonder if this is why my sleeping a lot, brain freeze, and low heart rate are part of my new normal. I just continue to wonder.
That’s really interesting. It can be genetic. Ever thought about getting tested?
I had to take early retirement because of post covid still trying to get a proper diagnosis. Issues since July 2020
I’m so sorry! Have you looked into dysautonomia or POTS? We put some links in the caption that you can check out for more information.
Common Thread? Most of us have been dismissed as having anxiety during the Pandemic (which makes sense...I get it) Most of Us aren't anxiety ridden OR neurotic.
C'mon health community...we DESERVE BETTER.
Very common thread! We heard this from too many people.
The covid ruined my life.
I’m so sorry to hear that. You are not alone!
The masks. Ugh. So glad Melissa chose not to wear one. I also wonder how many got vaccinated.
These interviews were filmed before the vaccines were available.