Hello.
I have POTS and assorted other problems, but thankfully no fibro.

My neurologist has not used the term dysautonomia but has told me that my autonomic system is not working right. So when I read about dysautonomia I realized it fit with my symptoms all too well.

I have POTS, secondary to Ehlers-Danlos Syndrome. My adult daughter has Neurocardiogenic Syncope, another form of dysautonomia.

TO: WISHIWAS :So POTS is hereditary??? OMG...whoa!

Sometimes it runs in families. There may be a genetic factor that gets triggered by a virus or something.

Sometimes environmental exposure is suspected. Gulf War syndrome is very similar.

My guess is that there are several causes for the same symptoms.

All forms of Dysautonomia can be hereditary.... you can be predisposed to it. I started having problems with it when I was a preteen - I'm now 55, and it is still with me - and they have just FINALLY gotten mine under control (like just within the past 1 1/2 years). But my daughter never had problems until the age of 34, and now her condition is worse than mine. I have POTS; she has Neurocardiogenic Syncope. She has a daughter that just turned 12, and we are already keeping an eye on her for it..... I believe I got mine from my dad - he always had real low blood pressure, and was prone to passing out. I think in a lot of people who have this in their family, something triggers it to start being a problem....

Also, mine is secondary to Ehlers-Danlos Syndrome - I just got that diagnosis last month. It sure explained a lot....

WISHISWAS: Wow, my docs told me they had dystautonomia on a bucket list of possiblities for me. And what was striking to me, was thinking my grandmother i grew up and how both of us HAD Balance Problems and Tremors. Do those symptoms like not being able to walk in high heels and hold your balance or walk up stairs and hold your balance sound like symptoms dysautonomia, one of my doctors told me Autoimmune Diseases & Dysautonomia are related and commonly seen together, have you heard about that???

FUNKYHASHI: Yes, I've heard about that. They didn't think they had officially determined that there was a true connection yet or not, but I've heard 2 of my doctors mention it. The balance problems, not being able to walk in high heels and problems walking up stairs - there are times when I have to LOOK at each and every stair before I step up (or down) on it. I have fallen down the stairs, and up the stairs, so many times throughout my life it's ridiculous. At least once a day I lose my balance just standing stationary - I will start to fall over - not faint, just fall over - I usually am able to catch myself. I trip over my own feet, and I trip on things that aren't even there. Vertigo is a constant, unwanted, companion. I was always told I was clumsy - well, it was the dysautonomia. No wonder in gym class I was always picked last for sports, and I could never get a grade above a C. It kind of irritates me now - it wasn't my fault I couldn't do a lot of the things everyone else could do. If the docs had known back then what they know now about my health, I would have been considered disabled, even as a child. My self-esteem was lower than low, because I just physically couldn't keep up with the other kids. The only thing that got me thru was that I was the class clown, I played clarinet in the band & was pretty good, and I was in the choir - a soloist. I had a beautiful voice back then. I also have tremors.... I've had perfect strangers ask me if I'm okay. Sometimes it's next to impossible to sign my name.

Have they done a tilt-table test on you yet? That's generally how they confirm the diagnosis. Take care, and let me know how you are doing....

Wow, amazing, I had all those symptoms you mentioned, then I was placed on Florinef or Fludrocortisone and they completely went away after 6-9 months of treatment and it was really bad. I lived on the second when I had those symptoms and I would never leave my apartment cause I was afraid of getting injured trying to go down the stairs. I could never keep up physically in high school, I literally just passed High School requirements for PE I remember. I think if the Florinef hadn't worked so well on fixing those balance problems, I would have been given the tilt-table test. But I was given tests to evaulate my blood pressure and heart rates both sitting and standing and the results were bad. My heart was going up to145 bpm upon immediately standing and my blood pressure was going down to 80/60 upon standing. Either your heart rate being to high or low BP will make you faint when you stand up, FACT! My dad always called me his "little accident waiting to happen". I have so many scars from running into things as a kid to this day. I remember I always wore platform shoes cause i lived the hollywood club nite scene and it was fashionable. But when this stufff started happening, I was terrified I would trip and fall in my shoes I wore my whole life with no problem. What medication are they you with for the Orthostatic Hypotension?

No dx for me. I have GERD and hemiplegic migraines dx though. My dysautonomia symptoms linger and worsen dramatically in the summer, as soon as it gets hot. I have had low blood pressure most of my life, anemia too. My lingering symptoms are heavy legs, dizziness, feelings of blood rushing from head. It sounds quite minor, but when the heat hits, I get numbness, tingling, vertigo, nausea...I just feel extremely ill (and sad).

Wow no one has been on here is quite a while. Since the person who started it left DS.
Hello Booklizard!

The summer is the worst time for me too. It gets really hot where I live and I have to stay out of the heat and away from the sun. I am stuck in the AC all summer long. But at least it is pretty outside while I am stuck in.
I am getting help for the dysautonomia from a really great doctor. I suspect there will always be precautions form heat etc. but it can get better.

Hi careforsufferers. You are lucky to have a sympathetic doctor. My doctor has not been very understanding and a neurologist chalked it all up to stress. Then why am I worse in summer and relatively well in the cold months, despite the same levels of stress? I wish someone would listen.

My mother actually pointed me to dysautonomia for what I have been enduring for the past 4.5 years. She saw "Mystery Diagnosis" and it struck her how close the subject's symptoms were to my own.

It gets very hot here too. In the 40s celcius with the humidity. The AC is my friend as well :)

Where are you located if you don't mind me asking? Canadians, like me, often travel to the US to see specialists.

Hi there. I was diagnosed with dysautonomia in December 2010. I bought a book called "Help, My Body is Killing Me" by Kevin Connors. It is a book that explains autoimmune deficiencies and disorders with simplified English. I have found it very insightful and helpful in understanding how our bodies work against us and the importance of asking, "why?" I have some fresh questions to ask my doctor now and I realize the importance of being my own advocate where health is concerned.

I have it.