leeloe Posted May 22, 2016 Report Share Posted May 22, 2016 Hello everyone I am a long time reader of this forum. I'm always impressed by the knowledge that so many of you have, that I finally decided to sign up and see if anyone might have some input for me. I guess I should start off by saying I've been informally diagnosed with dysautonomia by an electrophysiologist. He put me on a beta blocker with no further testing. The beta blocker lowers my pressure and heart rate for a minute or so but it is quickly over ridden. However I can't seem to make this doctor understand this, because he can't be bothered to wait 5 minutes to check for himself. At 5 minutes of standing a heart rate of 145 and bp of 160/100 is not atypical. He insists I have orthostatic hypotension. He gave me florinef and it nearly blew the top of my head off from hypertension. Then he wanted to try midrodine (sp). I didn't bother filling the script. Now I'm labeled as noncompliant and requested to find another doctor. Does this mean I have Hyper pots? And is all Hyper pots caused by mast cell issues? There seems to be such confusing info regarding this. i know I feel worse on the beta blocker but it has stopped what i assumed were adrenaline rushes to my gut area on standing. But now I get dizzy and have headaches. I can only manage to be on my feet for approx. 2 minutes. I sit in the shower. I do notice my legs turn red in the shower but they don't seem to just regularly, though my legs are weak and my feet ache. I was diagnosed with fibromyalgia years ago. My entire digestive tract feels stiff, for lack of a better word, and standing just intensifies it. I have chronic constipation, major stomach bloat, and even esophageal spasms. All this is constant, maybe varying in intensity but never going away. I have a diagnosis of anxiety which I don't deny but I feel the health problems are the underlying issue. Having said that however, the last few years have been very traumatic for me and i do feel much worse. An ssri as been recommended by one doctor but another doctor said it would make me worse. I am frightened to start a drug that may make me worse that I won't be able to get off. I am just so lost, I don't know what to do. One other odd thing the docs have no idea about: If I drink Sprite or Kool-aid I have to pee almost immediately and its a large amount, and colorless. When I drink water it takes hours to come out and its a scant amount, dark and concentrated. Is there anyone here who shares my symptoms? All opinions and input are welcome. Thank you! Lee Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 22, 2016 Report Share Posted May 22, 2016 Hi Lee, I've had a long day but I will write more tomorrow when I can look up some resources for you. In the meantime, you might take a look at our physician list to see if there is a doctor near you that is more familiar with treating dysautonomia. http://dinet.org/index.php/physician-list?view=physicians HyperPOTS is not necessarily from mast cell issues, and, actually, many with mast cell issues experience low blood pressure when they are experiencing mast cell reactions. One of the papers I want to find for you tomorrow helps explain HyperPOTS. As far as your feet and legs becoming red in the shower, hot water will vasodilate the vessels in your skin which allows for easier blood pooling. A general recommendation for POTS patients is to take cool to Luke warm showers to prevent vasodilation. I hated that idea because I really enjoyed my hot showers.....until I learned this and started taking cooler showers and found out how much easier it made the process for me. More later.... Katie Quote Link to comment Share on other sites More sharing options...
statesof Posted May 22, 2016 Report Share Posted May 22, 2016 Hi Lee, welcome to the forum, like Katie said it seems like it would be good for you to try and find a autonomic specialist who has a better understanding of this illness. Anxiety is common for POTS people, for me personally, my anxiety is exacerbated by the POTS, I see it more as just another symptom of my autonomic issues. Digestive issues are also common, I find that my digestive tract is constantly out of wack. Have you tried using compression stockings or salt and water loading to see if they help the way you feel? Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted May 22, 2016 Report Share Posted May 22, 2016 One easy thing that helps me tremendously is to drink 3-4 liters a day of water with electrolytes. My favorite additive is the product Nuun, but there are threads here describing what people do. The best advice I can give echoes that above: try to find doctor versed in POTS. Sylvie Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted June 26, 2016 Report Share Posted June 26, 2016 Hi Leeloe - How are you doing? Were you able to find a dr who specializes in POTS / Dysautonomia? I hope things are going better for you ? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.