You're welcome, I'm so glad to hear this even years later. an updated dysautonomia introduction video has definitely been on my to-do list but I've been procrastinating for quite some time.
The other day I saw you at the shreck musical and I was so impressed by what you managed although life is tough. My Family agreed on how awesome you are and you really made my day. I volunteer in therapeutic Riding and feel like I want to have a job in that direction. Be brave and never give up because youre such a rollmodel!(Im an exchange student from Germany and please dont mind my Englisch 😀)
Being told it's "all in your head" is so frustrating and unfortunately really common. I think one of the best thing I ever did to combat that was to see a therapist for a little while that was able to get her opinion. She assure me all of my symptoms were merely physical symptoms of a physical ailment and gave me the kind of motivation I needed to keep seeking treatment!. Stay strong! Sending love! -Meredith
But also do remember that eventually once you go to the spiral of POTS that anxiety can also become part of it. I had to acknowledged it eventually. It helped me a lot to develop tolerance against stairs and walking
I was just diagnosed with both. I have borderline pots so I’m lucky it’s not as bad as it could be. During my test, they gave me nitroglycerin and my blood pressure dropped and I passed out. That’s when they found the neurocardiogenic syncope. I haven’t passed out before, except when I was 11. I’ve only blacked out and ran to the bathroom and sat down and I was back to normal. It was very stressful doing all these tests when all I had to do was see a cardiologist. I had symptoms since I was little bit we thought I played to hard and I was still growing. It ramped up in December and I got my diagnosis this month!
so glad to hear you've gotten answers. I've actually learned a bit more since making this video in that my main issue is POTS but I'm that 3rd of POTSie's that fully faints (as opposed to pre-syncope) and neurocardiogenic syncope is the type of fainting mechanism that occurs in those circumstances. Hope this additional info might be useful to you! Also, feel free to contact me through my website if you'd like a free copy of my Housekeeping Hacks guide for folks with autonomic dysfunction.
I don’t understand why everyone is so happy in these videos. Life with POTS is hell. I am never happy. I am always miserable, in pain, exhausted. I don’t get it.
I have neurocardiogenic syncope as well. For me, the two worst things with this condition is when friends, family, or even doctors don't understand, and the second is that I can't do everything I used to be able to do. My brother doesn't understand and says that when his baby comes I might not get to hold him because of this condition. It really breaks my heart.
Have you been to a specialist who can help to find the right medications that work best for you? Mestinon, Ivabradine, Guanfacine, Clonidine, or a beta blocker can help. Calf compression sleeves like marathon runners wear, increasing electrolyte intake, and putting on more leg muscle can also help.
Family not supporting me for so many years has been so hard for me as well. I get it, but family can be created anywhere. Create a new family that will support you!
I literally can’t stand up without heart palpations and my heart going into SVT. I keep passing out when standing up when my heart rate is low but my doc doesn’t listen to me. It’s always “it’s anxiety” or “you’re overweight”. I went to the ER and got a orthostatic hypotension diagnosis a couple months ago. I don’t know what to do because I keep passing out. It’s dangerous and I don’t know how to stop it. Any tips?
Definitely get a different doctor, as your current doctor is going to be a barrier to your ability to receive proper medical treatment. A neurologist or cardiologist who specializes in dysautonomia would be your best bet. Compression calf sleeves like marathon runners wear and putting on more leg muscle can help, as can increasing electrolyte intake. Medications to treat orthostatic hypotension and palpitations include beta blockers, Clonidine, Guanfacine, Ivabradine, or Mestinon. It might take some time and a good doctor to find what works best for you.
Yay new subscribers!! Thanks so much! Also just so you know, I actually don't live in New York. I am however dancing for a touring dance company at the moment and we will be touring to New York later this year!
@@nicholethechronichousewife480 inappropriate sinus tachycardia. A resting heart rate above 100 and above 90 when sleeping. And can surpass 150-200 during exercise.
Have they tried you on Mestinon or Ivabradine yet? Doctors didn't know how to treat my POTS for years, but thankfully I responded great to Mestinon and a small nightly dose of Clonidine.
I went to nyu langone for years. They did nothing for me and just kept passing me around to different Dr's telling me I'm normal. It got so bad I'd get triggered just making a Dr appt. Go out of state to find a Dr or a telehealth dysautonomia specialist
Hey! I've been a subscriber for a while now, and would love to talk. I have several health problems, and think I MAY have POTS. I'm a hypochondriac so I'm probably wrong, but from my research it sounds possible. I've done my own test where I would lie down, check my heart rate, and then stand up and check it, and my heart rate would jump 30 bpm or so, and I often get dizzy. I have headaches every day, and am always EXTREMELY tired. I am sure part of this is because of my weight and lifestyle, but wonder if it could be something more.
Do you have hyperflexible joints? For me, POTS and neurocardiogenic syncope was the first sign of hypermobile type Ehlers Danlos syndrome. Doctors often accuse Ehlers Danlos people of being hypochondriacs, unfortunately.
Neck issues affecting the vagus nerve can definitely cause dysautonomia! That's why the vagus nerve stimulating medication Mestinon has emerged as a great treatment option to treat dysautonomia and POTS/OH. Getting the neck realigned by a chiropractor can help, too!
