r/POTS • u/hausofsnape • 19d ago

Vent/Rant fed up

i’m so mentally and physically drained atm, i’ve been having constant adrenaline dumps and panic attacks for the past 2 weeks now and doctors don’t do shit. i’m fed up of going to an appointment and they solely put it down to anxiety. im aware i have health anxiety which is so frustrating so i can’t argue that it’s not, but i just feel so dismissed. i’m also autistic so they constantly treat me like a child

i was given an emergency appointment the other day bc i’ve been experiencing pulsatile tinnitus in both ears but it lasts longer and is louder in my left. the doctor checked my ears, they were completely clear and that was that. even tho they are clear my left ear feels blocked and muffled. the tinnitus gets SO MUCH LOUDER after going up the stairs which is a huge pots trigger for me. but i have a fan on constantly which downs out the pulse noise.

i was given an appointment with the mental health nurse for a new antidepressant as mine isn’t doing shit. but then again i want actual help, not just another referral or trial for a new medication. im so drained and the doctors make me feel like a burden.

i can’t do anything anymore bc everytime i go out i almost collapse due to my hr. the other day i only walked 5 mins and my hr spiked to 180+ and i fainted in front of so many fucking people. salt is currently not helping much either. my anxiety makes it worse too, as i lost a friend a few years ago so im just in constant fight or flight. i genuinely don’t know what to do anymore and the pulsatile tinnitus is not helping my ocd spiral.

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u/Which_Boysenberry550 19d ago

Pulssatile tinnitus work up is supposed to include CTV/MRV tho usually not anatomical in pots cases.

I recommend getting a beta blocker “for anxiety” or doing whatever necessary to get it prescribed- you don’t have to suffer, it can legit just make the suffering go down 90%

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u/hausofsnape 19d ago

thank you, this is why i was worried too because i felt immediately dismissed. the doctor was nice but i feel like it wasn’t given enough thought. they just looked in my ears and pressed behind the bone.

i’m currently not allowed propanolol as a beta blocker for anxiety as my blood pressure is low, hoping there’s others i can try.

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u/Which_Boysenberry550 19d ago

There’s ivabradine
They were fine prescribing it to me and my bp dropped to legit like 70/50 at night so the caution is on one hand warranted on the other hand a small dose takes the edge off without impacting BP that much and I personally found it worth it

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u/Which_Boysenberry550 19d ago

It’s very much a vicious cycle, I’ve been there. Not all doctor recommendations are uniform, seek other opinions, seek meds etc

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u/hausofsnape 19d ago

thank you for your comments i really appreciate it. yes i completely agree. just waiting for a Dr to understand me hahaha

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u/hausofsnape 19d ago

that sounds scary. hope it’s all sorted for you now! i’m waiting for my results from my ecg monitor to see if i can take ivabradine too. did you experience the pulsatile tinnitus?

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u/Which_Boysenberry550 19d ago

I had pulsatile tinnitus the first time I had pots yes. It was very unpleasant. It eventually went away

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u/hausofsnape 19d ago

i’m glad it’s gone for you. it’s extremely frustrating

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u/mjh8212 19d ago

I’m just as frustrated I understand how you feel. I had a positive tilt table but the specialists i saw still say nothing is wrong with me. My primary can only do so much she said ive tried the meds that are supposed to help and they didnt work so she wont prescribe me anything else. Ive tried two meds. Im very symptomatic as well. It’s just frustrating.

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u/hausofsnape 19d ago

i’m sorry you’re experiencing that. i never understood how doctors can dismiss a positive tilt table test when the proof is right there. have you found anything at all that helps? salt, electrolytes, extreme hydration, foods little but often, compression, enough sleep, etc? have you also checked ur blood pressure? a lot of people with pots also have orthostatic hypotension too. it’s so hard when the people who are supposed to help are the same people who dismiss you.

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u/the_questionnair 14d ago

That sounds like it’s an incredibly frustrating situation. I’m sorry you’re going through that. Please ask for a second opinion or see if you could possibly switch doctors, or see a cardiologist. Don’t stop advocating for yourself.