I'm trying to find do I have POTS and/or chronic orthostatic intolerance. And it is incredebly how hard it is here in Zagreb, Croatia. I can't even find doctor who knows anything – they are just ordinary cardiologist; and the far they can see is syncope; low blood pressure and fainting , actually. When I ask them about POTs and COI, they looked at me like I was crazy ... I thought "They don't know what I'm talking about!They don't know?!How is that possible?They are finished their study, so how n earth they look at me like I talk blabla?". But, I suppose, Croatia is to small country, and they get stucked in their own sub-sub-speciality, and they don't have contact with people like me. Maybe GP's people like me watch as , well, something like really neurotic folks ... I don't know; I shouldn't care, but I do, because it makes me difficulty to find ( medical ) help.
So, this is my story.
I never had any problems, except sometimes, but rarely , after standing from chair, something like tinitus and lightheadness, but just for a few seconds. But, after I had rubella&postinfetious encephalomyelithis, and then I got undifferentiated connective tissue disease& Raynaud syndrome &Antiphospholipid syndrome, I got tachycardias. Especially while standing and/or moving; bending, changing body position. They weren't so bad; just few times; and I couldn't even measured my pulse; I believe it was very above 200, and my BP monitor didn't want measure my BP&pulse. I went to the emergency, but, after app. 2 hours of waiting, my pulse was OK – 100 or so. They gave me diazepam 5mg, and told me to take it if I'll experience the same.
I have MVP, but really small MVP, because when I went for regular ultrasound check-up, few doctors ( I can't go allways to the same one, because it depends which of them has free termin ) told me that it is so small that they even wouldn't caracterized it as MVP, they would said everithing is OK, no MVP.
But, a week ago, I climb from the cellar to the 4th floor, came to my flat, I felt little fatigue, but nothing much; I was little upset because somebody brokeone of wooden lath at my shed in the cellar, but I rolled very quickly to take something and then: I felt all of my blood gone into my heart; I felt like I will fainting, it was so bad; I lie and took 5mg of diazepam, and it didn't stop ... I called my GP, he told me to lie still and call emergency if I won't feel better. I called them, they told me to take atenolol ( asked me do I have any medication ... I didn't but my fater had/has, and I had carvedilol somewhere in the fridge ( my mum died 4 months ago, and I left some of her drugs for family friend who takes the same, but she doesn't live in the same town, so I save them for when I'll see her ); then I called my GP again, he told me to measure my BP, but I couldn,t, nor my father, and we tried 5-6 times. My GP said that I shouldn,t take atenolol if I have low BP. Anyway, I took 2,5mg diazepam ( so 7,5mg totally ), tried to relax ( but I was frightened and felt panic ... my mum died of heart attack&pulmonary emboly and I was with her till last few minutes ... they made me go out of emergency room, and then she died when I was sitting outside, uh, I'm crying now, it hurt so much ), called my GP, he told he'll come in ½ an hour ... Then, after 5-10 min. I felt better, measured my BP&pulse ( 125/87/91 ).
It was 8 days ago, and I'm still fealing pulse problems: when I'm walking, standing etc. I have palpitations; and, well, I'm scaring a little ( or lot ).
I'm fealing fatigue and breathy, like after having heavy exercise.
My GP sent me to do some blood tests: T3,T4,FT3,FT4,TSH,catecholamins,CBC,cortisol&ACTH,growth hormone ... and I,m waiting for the next free termin in the lab ( late october ). And I just don't know what to do.
I have to wait for my apointment with my cardiologist ( she ordered me in december! ), I'll do tilt-up table test in november ... and what I'm going to do today, tomorrow and every other day? Taking diazepam? Taking atenolol?
I measured my BP&pulse few time for tha last few days; even my BP is usually around 110/80, it was 136/91/76, 124/90/96 ...
I just don't know what to do ... it is so long untill all that testing and visiting my cardilogist ... I fill scary, I don't know how can I help to myself, how to prevent such tachycardia and how to stop it! How to stop it fast!
I red what I found at *****.org, and different tacycardia/POTS/OI related pages, but I'm still frighten.