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Hi! I have exactly these symptoms too! I understand how scary it is, just keep on persevering with the doctors until you find one that can give you a proper diagnosis and treatment plan. It seems impossible to find one but hang in there, you can do this :)

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I have hyper pots as well. I was diagnosed last month officially. When I get the adrenaline storms, my heart rate gets as high as 200, and stubbornly won't come down. The first time this happened, they gave me beta blockers. They prescribed way too high of a dose for my size, and I got all kinds of crappy side effects. After being diagnosed, they prescribed a different beta blocker at a much lower dose. I was stable on this for a while. My adrenaline storms were shorter lived and my heart rate didn't get as high. Unfortunately, later in the month, I was also diagnosed with an AV block. Now, I can't take beta blockers to manage my symptoms. They prescribed ivabradine to keep my heart rate down, but it does nothing for blocking adrenaline specifically. It's not approved for pots treatment in the US, though, so I haven't been able to get it filled yet. It's been three weeks without medication, and I've already had one severe adrenaline storm that put me in the ER. 

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On 3/8/2019 at 2:31 PM, aelizabeth3300 said:

I have hyper pots as well. I was diagnosed last month officially. When I get the adrenaline storms, my heart rate gets as high as 200, and stubbornly won't come down. The first time this happened, they gave me beta blockers. They prescribed way too high of a dose for my size, and I got all kinds of crappy side effects. After being diagnosed, they prescribed a different beta blocker at a much lower dose. I was stable on this for a while. My adrenaline storms were shorter lived and my heart rate didn't get as high. Unfortunately, later in the month, I was also diagnosed with an AV block. Now, I can't take beta blockers to manage my symptoms. They prescribed ivabradine to keep my heart rate down, but it does nothing for blocking adrenaline specifically. It's not approved for pots treatment in the US, though, so I haven't been able to get it filled yet. It's been three weeks without medication, and I've already had one severe adrenaline storm that put me in the ER. 

Thank you for your reply. Means so much to me to read about other people who experience this as well. Makes me feel so much less alone. I’m sorry you deal with this too. It’s not easy and not a fun way to live.

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On 3/5/2019 at 1:17 PM, Meemee said:

Hi! I have exactly these symptoms too! I understand how scary it is, just keep on persevering with the doctors until you find one that can give you a proper diagnosis and treatment plan. It seems impossible to find one but hang in there, you can do this :)

Thanks! Have you been diagnosed with Hyper POTS?

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On 3/13/2019 at 6:51 PM, RachaelLee56 said:

Thanks! Have you been diagnosed with Hyper POTS?

No, but my doctor suspects it, just awaiting some tests now xx

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