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hi everyone,

my name is Krys and I was told I have orthostatic tension and postural tachycardia by my PCP. He checked my blood pressure lying down and standing and also checked my heart rate and he said it's bad and I have to see a cardiologist. The cardiologist said it is all in my head, everybody has this and I should go home and drink more water and exercise. I started drinking more and I also try to exercise but I feel awful after a few minutes.

My problems started after I had an emergency appendectomy last year around this time. When I came around after the surgery I just knew somthing was wrong but I didn't know what. I would feel weak and faint when trying to lift my head off the pillow, my eyes would get all blurry and stuff and I could feel my heartbeats in my fingertips.

My biggest prorblem are palpitations and dizziness. I take ativan and my PCP wants me on lopresor as well.

I have many questions, I don't even know where to start since I am kinda overwhelmed atm, so please forgive my newbie mistakes

Have a nice day everyone

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Welcome, Krys. Have you looked into finding a doctor that specializes in autonomic dysfunction (orthostatic hypotension and pots fall into that category)? There is a physicians list link on the dinet home page. If you can't find a doctor near you there and would like to find a one, often starting a thread here that has a title like "looking for a doc in ....." allows members here to help you find docs in your area that are familiar with autonomic dysfunction. It sounds like your pcp is on your side, so they may even have another doc to send you to.

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Welcome Krys! I hope that you can find support from people on here. I think a lot of people who have POTS/OH, etc. tend to get at least one doctor who doesn't understand what's going on and automatically jumps to the conclusion that it must just be psychosomatic, anxiety, etc. I agree that finding a good Dysautnomia doctor could be pretty helpful for you!

Best,

Fainting Goat

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Hi Krys

Don't know where you live but hope you can find a dysautnomia doctor near you. Your story sounds very familiar. Don't get discourage and ask lots of questions if you can't find answers.

Rachel

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thank you for your warm welcome. My PCP is very good and he thinks he can help me but wants me to have some tests done, which is understandable.

I'm already overwhelmed by the amount of info here but once I figure out how to navigate the forum and all I will ask more.. You all seem very knowledgeable about this disease. I am still learning.

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Welcome Krys,

I hope you find, as I did, that is forum has a wealth of information and so much support. I don't know what I'd do without this group of wonderful people :)

I have had POTS now for 5 years. Your story sounds quite familiar (although I had what seemed like sudden onset, but could have had it most of my life). I am glad to see that your PCP is willing to help. I hope you can find a dr. in your area that specializes though. My PCP treats me as well as he can as I haven't yet found a dr. in my area. Try not to get discouraged about the whole anxiety route, many dr.s it seems go this way when they have little to no knowledge of the syndrome. I've been told many times that mine is anxiety. Thing is...your Autonomic Nervous System is what controls anxiety, so it would only be logical to assume that anxiety is from the wacked out ANS and not in your head.

Here is what I consider to be a great article about this. It is written by a former Neuropsychologist turned Dysautonomia Patient:

http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox

Here is her blog as well: http://bobisdysautonomia.blogspot.com/ She has lots of info, encouragement and humor in her writing.

Best wishes to you!!

Bebe

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Hi Krys,

Welcome to the forum!
I had a problem several months ago with a cardiologist who obviously didn't believe a word I said. So I switched to a new cardiologist who is really great, he orders all the tests that I need and already has a medication in mind for me to try.

Maybe you should have a look at the list of doctors who specialize in POTS, on the dinet website?

Best Wishes,

Lyla

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Hi Krystal,

Very sorry you joined the club; but I want to encourage you like everyone else to seek out a specialist. Your experience with your cardiologist is not all uncommon. As previous posters said a neurologist or cardiologist that specializes in autonomic dysfunction like the ones listed on the DINET website are most likely to be helpful. Things can get better!

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