Annaliese Posted August 24, 2011 Report Share Posted August 24, 2011 Hi everyone. I am new here and was wondering if someone could help with interpreting the definitions of PD pots and hyper POTS. In one of Grubb's articles (Postural tachycardia syndrome, Circulation 2008)he says for patient with the PD form that "Many of these patients report that their symptoms begin after an acute febrile illness (presumed to be viral), as well as after pregnancy, surgery, sepsis, or trauma7. It is presently felt that in many patients this form of POTS is an autoimmune disorder." He then goes on to say that for the Hyper form "These patients often describe a more gradual and progressive emergence of symptoms over time rather then an abrupt onset." What I dont understand is this: I think I have hyper pots because I have high BP on standing BUT my illness was sudden onset (started immediately after pregnancy/c-section). I think my POTS is caused by autoimmune disease as the onset of fbromylagia was concomitant with the POTS onset. So, as you can see I dont seem to fit into either group! I really want to understand this as I am desperate to 1)know my prognosis and 2) form an appropriate treatment plan. Any help you could give me will be greatly appreciated. I should also add that I have had autonomic dysfunction all my life in the form of hyperhydrosis. I do not live in the states so don't have access to the extensive diagnostic services available there. Quote Link to comment Share on other sites More sharing options...
corina Posted August 24, 2011 Report Share Posted August 24, 2011 hi annaliese, welcome to the forum!i can't actually help you with your questions, but i'm pretty sure there are people like you around here. isn't it amazing how different we all are and still somehow "in the same boat"?i'm not in the us myself (i'm in europe, the netherlands) and learned about everything i know about pots/dysautonomia, treatments and medication here at the postplace forum. i'm not sure where i would have been without this forum!again welcome and hope you'll find the answers to all your questions!take care,corina Quote Link to comment Share on other sites More sharing options...
radiohfan23 Posted August 24, 2011 Report Share Posted August 24, 2011 Hi, you pose the same question I had when first discovering I had POTS. My doctor is quite good and diagnosed me on my initial visit with pulse rate changes and visible pooling. I also noticed that my BP rose slightly when standing and also felt i had hyper pots so I asked for a Tilt Test. During the test I was negative for hyper as my norepinephrine stayed low even though the BP went up. I also have had hyperhidrosis since puberty interestingly enough. Do you have a solid doctor who can administer a Tilt Test and check your adrenaline levels? Sometimes in Tilt Tests they don't measure it so be sure to ask.Best of Luck,Joe Quote Link to comment Share on other sites More sharing options...
Annaliese Posted August 25, 2011 Author Report Share Posted August 25, 2011 (edited) Thanks Corina. Some of my family live in the Netherlands also : ) Edited August 25, 2011 by corina please answer by using the Add Reply button at the bottom of the page (right side) Quote Link to comment Share on other sites More sharing options...
Annaliese Posted August 25, 2011 Author Report Share Posted August 25, 2011 (edited) Hi Joe. Thanks or your reply. It's very interesting that your blood pressure goes up even though norepinephrine does not. My standing norepinephrine levels are elevated and I have all the sympathetic overflow symptoms like polyurea. Other than catecholamines levels I haven't been tested for anything to differentiate between the 2 types. Does your dys have an autoimmune origin? Why does your BP go up? Edited August 25, 2011 by corina removed the quoting Quote Link to comment Share on other sites More sharing options...
corina Posted August 25, 2011 Report Share Posted August 25, 2011 hi annaliese just a short fyi: i have edited your posts to remove the quotes. quoting takes a lot of bandwidth and makes reading more difficult. when you want to answer, please scroll down the page and use the Add Reply button (dark blue, right side). we realize you're new so don't worry, this is just to help you use the forum!take care!corina Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 25, 2011 Report Share Posted August 25, 2011 Annaliese- Welcome! Glad you found us. I have been diagnosed with "PD with a hyperadrenergic component" by a Neuro at Mayo so it seems you can have both. I know I had the same problem when I was reading these articles and trying to find where I fit in. His comment after that was that this combination makes treatment difficult because the treatments that help one form will frequently exacerbate the other form. On the good news side, I'm functionally doing pretty well with my treatment. Not where I want to be, but I AM functioning on a daily basis which is a huge improvement over the days I couldn't leave the house and spent most of my time in bed. Good luck! Quote Link to comment Share on other sites More sharing options...
Annaliese Posted August 26, 2011 Author Report Share Posted August 26, 2011 That's great that your treatment is at a point where you can manage. Not leaving the house is soul destroying. For 6 months I didn't really leave the house except for medical appointments. I am so glad that phase is over. I am still very dysfunctional but at least I get out to the park with my kids sometimes. Did your dr say why you are mixed pd and hyper? Did you try SSRIs? I haven't tried then yet because I am a bit scared my anxiety will worsen. Quote Link to comment Share on other sites More sharing options...
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