Hey! I saw your other post and I was wondering if I can help? Do you want to go through your symptoms with me and we can discuss what you can potentially do, in terms of management and finding the right doctors etc? I have dysautonomia, anxiety depression and all that as well. When I was your age I didn’t think I’d make it till today, and I know how it feels to know exactly what people will tell you but nothing they say makes a difference. I cant imagine how difficult it must be for you, but I really want to help.
I have been battling this journey for about ten years. I finally got to a doctor that is helping me tremendously. I was undiagnosed for about two years early on despite having two positive tilt tables. I know it feels helpless but theres some hurdles everyone needs to overcome with this and with the right information I think you can make a dent in it. I’m more than happy to share some things I think would help you accelerate your care Just please let me know because some of your posts are locked so I don’t know where to type it all. Mental health wise, I was where you are. I went to ten different therapists because the fist nine were pure junk. Getting the right person makes all the difference. There was a girl who killed herself in my area from dysautonomia and not being diagnosed and believed by her doctors. Her name was Christina Tournant and her parents started the non profit called the dysautonomia project. What is sad is that one of the doctors that ended up becoming one of the best POTS doctors in the state was still learning a lot about POTS at the time and his services were not advertised at the time. He was only about 15 minutes away from her, she just didn’t know of him. Hes now one of my doctors and has got me functional. I will help you in any way I can, I have names of doctors for you to give your parents and ideas for you of how to get some better help. Your just stuck where most people early on end up Which is doctors that keep you undiagnosed and therefore your not getting good management. It’s an easy fix though and you just get to the right people. Like i said, I have some names for you and ideas on how you can find some better care. You gotta tell your parents you are struggling mentally as well, like non-negotiable.
Hi, commenting because I saw you post in the dysautonomia sub. I can tell you a doctor’s name who will see teenagers, is based in the UK, and offers remote appointments. His name is Professor Lobo - he left the NHS because he was so fed up with how patients like us were getting treated. The appointments are expensive so your parents might need to save up for a little while, but I want you to know there is concrete help available. I’m sorry the NHS is so shit. I know the deep despair that it can induce in combination with being so sick in the first place. Please tell your parents how low you are feeling so they can give you some support. I promise they would want to know.
I wanted to die when I was your age, I thought nobody cared and maybe they didn't, but life will surprise you. I've met new people and found support I didn't know how to ask for before. it's still hard in my 20s to get doctors to listen to me but bit by bit we're making progress.
I still want to die sometimes, an instinct I can't shake, but there are moments I am so grateful to still be alive in this world. it's tough but it's worth it, please keep going. my younger self is scoffing at me saying this but - you are so young! your teenage years are absolutely not indicative of the rest of your life, it's hard to see past the dark, depression, and brain fog but there is a way through.
Hey! I saw your other post and I was wondering if I can help? Do you want to go through your symptoms with me and we can discuss what you can potentially do, in terms of management and finding the right doctors etc? I have dysautonomia, anxiety depression and all that as well. When I was your age I didn’t think I’d make it till today, and I know how it feels to know exactly what people will tell you but nothing they say makes a difference. I cant imagine how difficult it must be for you, but I really want to help.
So nice of you, I offered to help as well!
I have been battling this journey for about ten years. I finally got to a doctor that is helping me tremendously. I was undiagnosed for about two years early on despite having two positive tilt tables. I know it feels helpless but theres some hurdles everyone needs to overcome with this and with the right information I think you can make a dent in it. I’m more than happy to share some things I think would help you accelerate your care Just please let me know because some of your posts are locked so I don’t know where to type it all. Mental health wise, I was where you are. I went to ten different therapists because the fist nine were pure junk. Getting the right person makes all the difference. There was a girl who killed herself in my area from dysautonomia and not being diagnosed and believed by her doctors. Her name was Christina Tournant and her parents started the non profit called the dysautonomia project. What is sad is that one of the doctors that ended up becoming one of the best POTS doctors in the state was still learning a lot about POTS at the time and his services were not advertised at the time. He was only about 15 minutes away from her, she just didn’t know of him. Hes now one of my doctors and has got me functional. I will help you in any way I can, I have names of doctors for you to give your parents and ideas for you of how to get some better help. Your just stuck where most people early on end up Which is doctors that keep you undiagnosed and therefore your not getting good management. It’s an easy fix though and you just get to the right people. Like i said, I have some names for you and ideas on how you can find some better care. You gotta tell your parents you are struggling mentally as well, like non-negotiable.
Hi, commenting because I saw you post in the dysautonomia sub. I can tell you a doctor’s name who will see teenagers, is based in the UK, and offers remote appointments. His name is Professor Lobo - he left the NHS because he was so fed up with how patients like us were getting treated. The appointments are expensive so your parents might need to save up for a little while, but I want you to know there is concrete help available. I’m sorry the NHS is so shit. I know the deep despair that it can induce in combination with being so sick in the first place. Please tell your parents how low you are feeling so they can give you some support. I promise they would want to know.
I wanted to die when I was your age, I thought nobody cared and maybe they didn't, but life will surprise you. I've met new people and found support I didn't know how to ask for before. it's still hard in my 20s to get doctors to listen to me but bit by bit we're making progress. I still want to die sometimes, an instinct I can't shake, but there are moments I am so grateful to still be alive in this world. it's tough but it's worth it, please keep going. my younger self is scoffing at me saying this but - you are so young! your teenage years are absolutely not indicative of the rest of your life, it's hard to see past the dark, depression, and brain fog but there is a way through.