#hyperadrenergic pots

[little-pissbaby]

fun fact about me! I have hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hPOTS). this means I am prone to fainting when I change positions or when I feel a strong surge of emotion, positive or negative. for me, laughing is my worst non-postural trigger.

this is a clip from playing lethal company with friends a few months ago. you can hear the eerie silence of presyncope at 0:19, and the sound at 0:23 is my face hitting the keyboard lmao. I played this for my mother and she literally pissed herself laughing and DEMANDED I show every single person I know (including my doctors, who thought it was funny to see and surprisingly helpful, especially for being audio only).

[disabledvoid]

This is your friendly reminder that hypovolemic POTS is not the only type of POTS. There is also hyperadrenergic POTS and Neuropathic POTS. Sometimes there is another type included that is called Secondary POTS or POTS secondary to another disorder. Many people with POTS also have multiple types. Also most people with POTS don’t faint. Don’t forget all types are valid and your experience is still valid without fainting (also still valid if you faint though).

[fuchsiafins]

Back before I knew what was wrong with me (medically speaking) I'd work 7 days a week often 14+ hour days, and when something happened or I was experiencing 'symptoms' I'd either refuse to acknowledge them or try EVERYTHING trying to figure out what my body was trying to tell me. More water? sugar? Do you need uh... some sort of vitamin or mineral? salt? Who knows, try binging everything and see if anything helps. (nothing helped) And I'd be okay *enough* to coast through most of the year without much issue, ignoring my symptoms and pretending like I was fine (I was not fine). But almost annually my body would deteriorate so quickly and so badly around the New Year's that I'd have to go into the hospital due to how severe my condition would become at that point. The ER staff would have no idea where to start, acknowledge that yeah something IS very wrong my vitals are all over the place without knowing WHAT is causing it, as standard give me some IV's while they ran tests, and by the end of the IV I'd make a miraculous recovery and feel almost all better and be able to go home with all of my vitals magically stabilizing even though they didn't know what was wrong and technically didn't treat me for anything (aside from the bag of IV) This went on for years before I was adamant something was wrong and I had to advocate for myself to get sent to the right doctors in order to figure it out . Until I got diagnosed, I was concerned it was all in my head and that maybe I was just crazy or it was mental illness expressing in weird and unusual ways, but no it wasn't. Lots of appointments and testing and over a decade of wondering and I finally got the answer that explained most of my symptoms. Hyperadrenergic POTS.

[shamballalin]

If You Have POTS, You NEED This Information!

@kaibmama If you have POTS you NEED this information. #posturalorthostatictachycardiasyndrome #pots #potssyndrome #nondiabetichypoglycemia #dysautonomia ♬ original sound – Kai Bear This is my amazing daughter, Kai Bibeau. She has learned all this first-hand and knows what she is talking about. Please pass this on if you know anyone with POTS. It will help them know how to help themselves. God…

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[nd-babblinggoblinfromthevoid]

Gods I hate pots....

Today we finally managed to grocery shop and ⅔ of the way through a flareup hit me HARD. I nearly fainted several times before just collapsing onto the pharmacy bench...

I couldn't stand back up for a frustratingly long time. My husband had to walk me to their little machine to check my bp. My heartrate was 144 and bp was something like 130/80? I cant really remember I was in such a fog.

Hyperadrenergic POTS is the subtype I have which SUCKS I mean all pots sucks but high bp in general sucks. It doesnt help that I'm pregnant. Which of course exacerbates it a little more.

I barely made it back to the truck where I tried to help load groceries into the back but ultimately dragged myself into the passenger seat and disintegrated. Husband got everything squared away and the ride home was awful. I felt like death was upon me from how hard this episode was hitting me. (Dramatic I'm sure but that's how it feels when it's bad bad.)

Got home and thankfully our kiddos were ready for a nap. They went to bed and hubs and I crashed on the couch immediately after. (Tmi but if you have pots too do you ever just.... completely strip down and lie in front of a fan on full blast when the heat-flare gets ya? Cuz that's helped immediately take the edge off and aghk. Anyway.)

I am so. Fucking. Drained. From one shopping trip/flareup and I just.... I hate it. I hate this. 17 years I've dealt with this utter nonsense from my body and I'm just.... so.... tired... of it....

[aetheros]

feels bad seeing other people with hyper POTS whose heartrates only go up to 120 upon standing. mine goes up to 150 upon standing, 170-180 if moving too fast, 180-190 if panicking. can you imagine my immense fear of something like an epipen? it would kill me.

[aibidil]

✨POTS vibes✨

[oh-gee-no-way]

Health Update

Got diagnosed with HyperPOTS yesterday 

So now I have Hashimotos and HyperPOTS and some vague hypermobility issue 

I got told by my neurologist to see an allergist/immunologist about my hives and possible MCAS and hopefully if I get in I can see my rheumatologist or neurologist again and look into EDS (my neurologist said  looking into my pain and joint pain was the next step)

I still feel awful but I feel less awful than when I first got the Hashimoto’s diagnosis because my synthroid does it job well so there is hope.

For now I will still have to lie down a lot.

Tilt table was crazy though I had chest pain, shortness of breath, felt hot, sweating, leg tremouring, and felt lightheaded. I still don’t know my exact numbers (they did not show me the direct test numbers) but I did hear the tech say my HR was over 140 and it sure felt that way. My BP apparently went real high too but I don’t know the number. Typically I would have just sat down by minute two I don’t typically wait out the waves cause my legs get too shaky to stand. I didn’t faint but I have only done that like twice in my life so I was not surprised I didn’t.