Tw Loss Mentioned - Tumblr Posts

Seeing some other users pop up who also have pots, and reading their past and current struggles has inspired me to write a little about my experience. (From what I remember anyway.)

Just in case, tw/cw pregnancy loss is mentioned.

My symptoms started right smack at 13. I had always been slightly heat sensitive but not enough to really think about it. Then I turned 13 and it was like I was burning constantly. But also, even when I was hot, my extremities would still sometimes be ice cold.

I fainted in the shower, daily. I almost always felt it coming beforehand. The sudden dizziness and weakness. It was my normal routine to feel that, lie down, black out, wake up, then resume my shower. (Usually 5-15 minute black outs)

I knew something was wrong, but I was a young teen. My thoughts were "too scared to address it" and "I'm just being a baby" and "What doctor is gonna believe a teenager these days". So I suffered through it.

It was horrible. My teen years were riddled with unnoticed tachycardic episodes brushed off as "you're out of shape" and "just push past it". Meanwhile i felt like i was dying.

I know teenagers biologically need more rest, but i was chronically fatigued and of course, "lazy teenager" label got thrown at me constantly. I tried to stay active, productive, but it got harder and harder. (Not knowing I also struggled bcuz of audhd but that subject is touched on in a previous post.)

When I really branched out into life and into the workplace at 18/19, it hit me that this wasn't going away. This wasn't a weird teenage thing i was experiencing.

I could work, but was significantly more exhausted than my coworkers and the only one ever to stop a lot, Cool down, rest. Drove managers nuts because "you're too young to be this way" was said to me constantly.

Through a few job changes in my early twenties it got harder and harder to work. Exhaustion. Overheating. Tachycardia. I fainted at work idk how many times during a really bad streak.

On top of pots brain fog, I'm audhd (which i didnt know until mid-late twenties) so my brain just doesn't brain for me and all I had going for me were labor jobs. That's all i had. That's all i knew i could do.... and i was slowly becoming unable to do that.

I didnt push to see a cardiologist until i got pregnant with my first child. I was terrified. That pregnancy exacerbated my pots and i thought that pregnancy was going to kill me. If it didnt, then giving birth would. My resting hr was regularly in the 140s/150s and i was fainting/near fainting all the time.

But i saw a dick of a cardiologist who nearly immediately dismissed me as a hysterical pregnant woman who just had anxiety. Even in our first consult appointment he was already very not hiding the fact that he wasn't taking my concerns seriously. Even after I told him these symptoms weren't just popping up during pregnancy. That it'd been most of my life. (In one ear out the other let me tell you)

I suffered horribly through that pregnancy not knowing i also had pots so my heartrate and blood pressure were bonkers whenever i went to appointments, not knowing that i only had high bp bcuz they'd check it after I'd sat down in the lobby, stood up, then immediately sat down in a room. Which as y'all know fucks hr/bp and all that without being pregnant. But we didn't know. And the only dr I'd seen, dismissed me.

I thankfully got through the pregnancy and all was well. My symptoms went back to pre-pregnancy intensity. Life, a loss in between, and another full pregnancy happened. This time my pots didn't overly act up. I only struggled bcuz that baby was a biggg one.

After recovering from my 2nd birth i thought for months about everything. My health. My life with my kids. How i was sick of not having answers. Sick of how that first dr treated me. So i told my primary all of this and she sent me to the same heart institute, but a different dr.

NOW THIS DR LET ME TELL YOU.

From the GETGO the vibe was different. He listened. Talked with/to me not AT me. Actually listened with the intention of listening and absorbing the information, not listening with the intent to say whatever he was already wanting to say and just waiting until i stopped talking (like the previous dr)

He took me seriously. After info dumping my 16 years of suffering he was already ready to get testing done and scheduled and i nearly cried when he left the room because HE LISTENED HE TOOK ME SERIOUSLY.

I had my testing done (tilt and breathing) and he saw me for the followup but they hadnt gotten the results back so he pushed the dept for the results and one hour after that appointment, he called me and said basically "yea you failed the test almost immediately and your results were consistent through the whole thing so I'm proceeding with the diagnosis of pots"

He explained the basic no cure but you can try xyz to help and you need to listen to your body when it's having symptoms dont ignore it to your detriment. All that.

I hung up. And cried all evening/night. Happy tears. Tears of relief. I got my answer. I was listened to. I actually got through it. But also tears of grief. For the girl who suffered. For the young woman who thought she was gonna die during pregnancy/birth.

I'd had (and still slip into sometimes) a harsh mindset of self hate for years. Why am i so lazy. Why am i so weak. Pathetic. Etc. It just spiralled all the time and pots + audhd is a shitty mix and to be approaching 30, with answers I've wanted and needed for half of my life.... I just... uff da! It's a lot.

I was diagnosed February of this year. So it's still kind of fresh for me. I'm still trying to find what works for me officially to navigate it. But I definitely am trying to give myself grace for all the years I thought everything was my fault. Or that I just wasnt trying hard enough.

I'm sure I've missed some things but my memory of my life is really patchy from audhd and trauma. But I think this covers the bulk of it and feels good to info dump about life when, for most of it, I bottled everything.