StephL

I cannot believe how much my body has compensated for dysautonomia and I never realized it until recently. New things dawn on me quite often. It was the doctor who started pointing out little body languages that I had and are typical of people with this. Things like the way I stand and sit. Anywho, I say this because for a few years now I've been holding fluids in my mouth for a few seconds before swallowing. Once I held it so long that my dad even hollered over at me to swallow my coffee and he wasn't observant of such things. I think my body has done this to keep me from choking. Its like I have to prepare my throat. Last week I literally spit coffee all over my computer. I was happily drinking and all the sudden I choked and there was no controlling it. I've never had it happen so violently before.

ETA posted in wrong thread. Stoopid brain.

I forgot to add that I have hippus too. I wonder if many of us have that don't know it because its not something we can really see. My pupil looks like it vibrates when it is trying to make a light adjustment. Its odd and scares people if they notice it but I've just accepted it's yet another weird thing about me.

GI for me too. What I wouldn't give to have just one day with no tummy issues. Mostly nausea with me but the cramps and pain too.

If I ever get my butt in the pool, I'm hoping leg exercise will help me with this. My limbs don't turn purple so much but I can feel them swelling. My toes do turn blue if I'm in a sitting position and my legs get "bruises" on them when I'm laying in the tub that disappear after I stand back up for a few. I've convinced myself that I need some leg exercises but making myself actually do them is a whole other story.

Hi, I'm new to the group too. I don't have much to add than a lot of your symptoms sound like mine. I'm a little confused by this whole pots/dysautonomia thing myself. I don't seem to have the same symptoms as so many here as far as my BP and pulse goes. I haven't had my ttt yet though so I'm hoping we will get more definitive answers from that.

The main issue with my pulse is bradycardia. Its made me wonder if I don't have pots but some other form of dysautonomia. My pulse stays in the 40s to 50s, at most, when resting and it will jump up to the 140s upon standing or after getting out of the tub but usually it stays low. Dr. Randy said that I was having a parasympathetic response when I was in office but that is the normal for me. Before I knew what was going on with me, my mom accidentally stumbled across the fact that my pulse was that low. When I went to the cardiologist he didn't listen to any of my symptoms and treated me like I was overly concerned. He told me that its normal for athletes to have pulses so low. The problem is that I had a pulse in 70s until all this started and up until a few months ago I was 50 pounds overweight and I'm still 20 pounds too heavy. Naturally all the tests came back normal other than my bradycardia. I told my family doctor after that, that I didn't think I was dying or anything but that it was another clue because it didn't start until all my other problems did.

My doc was a little surprised that I can tolerate being on my feet at work for so long. I do work part time, when I work, so its not long hours but I seem to fine with it most of the time. I think sitting is harder on me than standing is. I'm glad it's working for you.

Hi, I'm new here also but I've already learned so much. I have a 20 year old daughter and she's had a couple of fainting spells so I'm concerned she may have pots also.

As I said in my introduction thread, I have anisocoria. It freaked me out at first but I've learned its just me. I think any time someone notices they have this they should have the nessasary tests run to rule out anything serious because it can. Once they've been through the gambit though, they can just accept that it's part of who they are and not worry so much. That's what worked for me anyway.

Hi Everyone, Its nice to meet you all. I've been following the forum for a couple of months now but didn't want to join until I had more solid answers. Without the tests to back them up, I'm on the road. I'll try to make my story as short as possible, as I know many of you have walked this road already. I guess I've had weird issues that doctors couldn't figure out my whole life so possibly I've always had dysautonomia. A few years ago my daughter noticed two different sized pupils. At first I laughed it off but after a bit of research I realized I better get into a doc asap. After months of every brain scan and image they could take of my upper body, they decided nothing was wrong with me. I was having several other symptoms during this time but as usual the docs didn't seem concerned about any of them. Then last summer I noticed that my BMs weren't my usual strange pattern and after a couple of months of that I went to my PC. I thought for sure it was my gall bladder as I have all the symptoms. I went through the usual wringer of tests with no results. Since that time my anisocoria is back, I've lost 30 pounds in a 3 months time, I've had intense intestinal pain, I live with near constant nausea, my pulse stays in the 40s most of the time, sometimes I pee every 10 minutes for a couple of hours. Among other things. I had given up on finding the answers a few years ago when my eyes went wonky, this time I was determined not to give up until I had the answers. If the doctors couldn't find them, I would, and I did. Months of research lead me here. I thought hemochromotosis for awhile and then Addison's disease but the tests all came back fine for them. I knew after all my research that the answers had to lay within my ANS. I made an appointment with Dr. Randy (Thompson) in Pensacola and he is certain I have dysautonomia. He said that he is so sure that if I failed a TTT that he would run a second one. He said its really the only thing that makes sense give all my symptoms. After years of dead ends, of being treated like a hypochondriac, I finally have answers. Well, not officially really. I go on the 8th for the TTT. I decided to go up to P'cola for the test because I know they do it the way Dr. Randy wants it done. The cardiologist I saw locally was not very helpful and I don't want to go back to his office for tests unless I have to. That is the basics. I'm sure I'll have a ton of questions and I have input on so many threads I've read through. I look forward to getting to know you all and I'm so grateful to have people who knows what its like to walk in my shoes.