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smitten_hussy in dysautonomiaaa


Hello! Welcome to the official dysautonomia community! My name is Paige and I'm your mod. I noticed there wasn't a dysautonomia community and I had to make one! I hope others like me find this place so we can all come together and have somewhere to talk and meet others and form a support group.

You can post about anything concerning your illness and how it's changed your life.

I started having problems in October of 2006. I didn't get diagnosed until January 2007. I was hospitalized for over a month and every three months I'm usually back in the hospital for IV therapy. I've gone through a lot and I know I always will. I went through a long depressing period and I finally got through it and I would really like to try to help others who are struggling with depression on top of all of the other problems. It is very hard and it's even harder when you feel alone and don't really have anyone to talk to about it.

I always feel like when I complain about my dysautonomia and mitral valve prolapse that people think I'm wanting attention or throwing myself a pity party! I'm sure you know what I mean. It's hard NOT to talk about it! It's a huge part of your life. So, this is going to be a safe place where you can bitch and complain as many times as you want to! :)

I made my own website (check user info) about dysautonomia and mvp. I tell about my story, who I am aside from the illness, symptoms, and many other things. So, that will save me from rambling on about ME. If there's anything you'd like to know just ask!

So, let's start telling our stories and sharing our every day experiences!


I am suprised this community is so, erm, empty :/

I am Alba and am 22 years old. Today I saw doctor Grubb in Toledo, Ohio and recieved my long awaited Dysautonomia diagnosis. I had been to doctors since 2001 trying to find answers. Today I have it:

I have Postural Tachycardia Syndrome Secondary to Joint Hypermobility Syndrome.

Paige, I hear you on feeling like others consider us searching for attention or something. I often feel like that, and that my friends think I speak of it too much. Well, of course I do... It controls my life right now, down to every detail.

Anyway, I am posting here in case someone sees it. The doctor I just saw is one of so few researching, treating, and educating other medical proffesionals about Dysautonomias. I hope it helps someone find treatment.

I know this post was several months ago, but I am here to help you, too.

My name is Jessica Sami Pennington. I have MSA and my primary problem is POTS, I also have every movement disorder (it seems) known to the medical community. I have slowed down considerably. I just want you to know that I am here, too.
All my love, Samibebe


what helps?!?!

Hello - thanks for putting this website out there. Maybe everyone can put notes down to what type of dysautonomia they have and what helps them...meds or other ways.
I have Postural Orthostatic Tachycardia Syndrome (POTS). I am still working with my cardiologist on finding a treatment that works for me - he has tried numerous medications on me so far with none to prevail. I think the extra fluids (pedialite, v8, a lot of water, gatorade) and adding a lot of salt to my diet has helped a lot with my lightheadness and some of the chest pain - but still am struggling with all of the many symptoms.

August 2007

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