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MVP/Dysautonomia Center


mom4cem
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I'm headed with my hubby and kids in tow to the mvp center to see Dr. Watkins. I have been there before and that is where I was told I had dysautonomia. Unfortunately it is so far away that we make the trip every other year by car but it usually gives me the reassurance to push on. This is the first time I will be seeing Dr. Watkins. He is one of the founders and has also written and studied dysautonomia. Hopefully he can give validate some of the symptoms I have been having.

Everyday my heart feels like it will take off and race. Yesterday it sat in the high 90's and my gi doc was not happy,(though he is not a big believer in the dysautonomia), I told him it was very warm outside and I work outside with kids in the school and I drank nothing more than 1 bottle of water all day..had nothing to say other than to take more beta blockers.Especially since my b /p was not bad. Seems if you don't fit into a textbook case they don't always tend to believe one. He is a nice guy but it is frustrating that not many dr's understand dysautonomia. If I did not take matters into my own hands, they would probably have put me in the rubber room by now :blink:

If the trip down does not do me in, then part of the battle will be over. Heading to Nashville before to check it out and then work our way back up and home w/a stop in VA to visit relatives.

Have to get my questions in order too.

I hate this tachy!!! Waiting for the next race to start...

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I have to tell you all something. As much as I hated my racing heart, since the ablation, when my heart wants to race and can't, and all I get are arrythmias instead, I wish I could go back to heart racing days. I'm not kidding. This totally stinks,I can FEEL my heart wanting to race and just not being able to and so it just starts wacking out arrythmias, which are a million times worse. I know you all probably think I'm nuts, but I'd love to go to a cardio and say, put in a pacer set at 110. Alos when it does it, if I listen, I'm a nurse, so of course I have a stethescope, I can hear a big murmur, that I can't hear when I'm not having an episode, so I know it's putting a strain on things. What a bummer. Now my BP has dropped, so that's why I'm in such a hole right now. I just feel like crap, because there's no compensation anywhere. I have been lying down more in the last few months than in my whole life before it. Ah, could I have some cheese with this whine please..... :blink: morgan :blink:

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Morgan, since your ablation you have felt worse? Why did they opt to do the ablation. Forgive me if you have answered this a 100 times before. My cardio says no to ablation at this point. Said I would probably be worse off than I am now.

Sorry :blink: you are feeling bad with rushes. I'll bring a bottle of white and red and plenty of cheese. Do you like it on a ritz or a triscit?

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Thanks mom, the one with the least salt! Yes Yes Yes, you have a very wise doctor. Ablation has it's place, but not in the pots world. Even though tachy is not fun, for us, it's sometimes the only way to compensate for being upright. I don't believe there is a single doctor who knows about pots that advocates it. Unfortunately I live in an area where no one really knows about it and my cardio didn't bother to check with any experts before doing it. He made lots of money and I got disability. I advise anyone with pots to get lots of opinions before getting ablation. If all we had were cardiac symptoms, it would be different. But it's the ans affecting our hearts, not the other way around. morgan

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So Sorry about ablation Morgan, Dr. wanted my mom to have one for her atrial fib... she still might.....

I would LOve to hear what Dr. Watkins has to say. I hope you get a good visit and plenty of questions aswered!!! Does he believe that MVP/dysautonomia is same as POTS? MVP sites always say avoid caffeine- which I did for years and just in last few have I found how much coffee HELPS!!! , I guess by constricting blood vessels. And do they ever give Midodrone- which helped me tremendously till my body figured out how to overcome its effects. And why does florinef (with gain of 15 pounds) not help with symptoms if low blood volume is our problem....And what about beta blockers? Sorry, its not MY appointment.

I took an adderal today for energy and my brain is going high speed still......Sorry......

Please report on your appointment. I have always wanted to go to MVP treatment center. Seriously, would you mind asking him one question for me----- does he think that there might be improvement, possibly after menopause?????????????? I am 47 this summer and would so love to think that someday I could participate in living life without constant brain fog and fatigue...........

THANKS!

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