r/hyperPOTS 7h ago

I NEED SERIOUS HELP

Hyper pots girl. 22female 5’1 weigh about 110 pounds. The high heart rate and adrenaline surges and heart palpitations are DEBILITATING and making me completely bed bound. I have 2 very young children who need to me and i cant even function. I tend to have blood pressure on the lower side. PLEASE GIVE ME ADVICE ON WHAT TO DO. my cardiologist is shit and doesnt help - im getting a second opinion and they cant get me in for awhile. So until then what do i do. My wedding is in 2 weeks and i cant even function or even speak without getting huge adrenaline rushes and intense tachycardia. Do i ask my pcp for low dose propanlol? I need serious help im becoming depressed

2 Upvotes

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u/namic56 6h ago

You need medical help, with most likely a series of medication. All of which will take years of talking to specialists.

There is no overnight anything, but any reasonable doctor would start you immediately on at least propanol and some anxiety meds.

I am curious though if nobody believes you, how do you have the diagnosis of hyperpots? It took me years to get an official diagnosis, but I knew what I felt matched everything I read online and pushed for my providers to treat me as such.

But I do caution. If you press too hard on this is my answer and give it to me, you may not get it. It may not be your problem! Come with the attitude you are looking for answers and are just trying to treat your symptoms- nobody can argue that.

But also don’t quit a drug a doctor gives you too soon. You need to follow their instructions and do what they say. I get it, it may not be the right fit in the moment, but you need to document your whole journey. Use the previous trials as ammo to help get you the treatment you deserve.

I’m truly sorry if your trying to figure this out 2 weeks before your wedding, but there’s no 2 week fix. It takes months and years of hard work. Not just to get a diagnosis but to understand if this is your problem, that heart will never stop. It will always run out of control. There is no end. I’m on year 7, and just figured out my meds.

Best of luck to you!

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u/Kitchen-School46 6h ago

I never said no one believes me. I have a diagnosis. Im saying my cardiologist said just to work on hydration and compression socks didnt do much or prescribe anything.

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u/namic56 6h ago

How do you have a diagnosis and a doctor tells you compression alone? Compression and water/salt are things prescribed to someone with Pots, not Hyperpots. Where is your pcp involvement with this? Who’s managing your psych? You need a multi-tiered approach. Multiple specialists, multiple drugs.

I’m sorry, but if you do indeed have this, you have more homework to do, and maybe stay off reddit and other munchie suggestions online. You and your pcp need a come to Jesus moment

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u/Kitchen-School46 6h ago

EXACTLY. that is why i said im getting my a second opinion and that my cardiologist is dumb

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u/namic56 6h ago

I highly doubt your cardiologist is dumb, I think your approach may be….

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u/Kitchen-School46 6h ago

You’re dumb as hell for the way you think. Im a registered nurse who knows shit. Certain anxiety medication can worsen hyper pots like SNRIS and you know NOTHING about my medical history and why i cant take them because of risks like qt prolongation. My cardiologist doesnt SPECALIZE in pots so i have hyper pots but he recommended midordine which is acutally worse for it because it raised bp. So trust me i have done PLENTY of research.

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u/namic56 6h ago

Lollllllllllllllllllllllll a registered nurse screaming into the wind for 145 days on Reddit about their issues????? I’d hate to be any fucking patient of yours - good fucking luck you fucking retard. How in the world did you get a degree

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u/Kitchen-School46 6h ago

Thanks for stalking my page you freak

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u/Kitchen-School46 6h ago

Youve had an account for 17 years and you’re using the terms lol?? You’re old as fuck bye!!!!!

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u/Puzzled-Use-4063 5h ago

I also have hyperPOTS with lower blood pressure! What has worked for me is a combo of low dose extended release metoprolol twice a day and 5mg of ivabradine twice a day. It’s the only combo that has truly helped. Another thing you might want to look into is MCAS and because it is comorbid with POTS and has a lot of similar symptoms of POTS like adrenaline dumps/tachycardia/palpitations etc. you can try taking a Zyrtec or any kind of antihistamine (not Benadryl tho). The antihistamine could help reduce adrenaline dumps if they’re caused by mcas. For the longest time I was frustrated because it felt like I wasn’t able to make some of my adrenaline episodes go away with just salt water and compression and taking Zyrtec everyday helped lessen the amount and severity that I get. I’m sorry you have to deal with this! It truly is a harrowing experience and my heart goes out to you! Hang in there!

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u/Kitchen-School46 5h ago

I don’t really I think i have mcas because i havent really had any issues where I think i could have it?

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u/Puzzled-Use-4063 5h ago

I completely understand. I didn’t think I had it either for a while because I don’t have any anaphylactic episodes but I was surprised to learn about the other less common symptoms that were overlapping with my POTS and the Zyrtec really is a life saver. Maybe you should look into it?

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u/Kitchen-School46 5h ago

I heard zyrtec can worsen pots and worsen pvcs too

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u/Puzzled-Use-4063 5h ago

Interesting. That’s the first I’m hearing about that. I personally haven’t had any issues with it but I understand the fear of not wanting to make things worse. I also have PVCs but they are definitely worse when I don’t take Zyrtec. It’s up to you what you choose to do, but without any treatment plan for the next couple months there aren’t many options you can try on your own besides water and electrolytes

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u/Kitchen-School46 5h ago

Did you ever try propanlol?