Lies

03 Aug, 2024
- Dysautonomia

I was 15 years old when I learned about HRT as I was discovering I might be trans. I immediately knew I had to get it as fast as possible, I could not stand seeing my body transform into a gender I know I am not every day that goes by, I thought, hormonal treatment would put an end to that, it would even correctly shape my body, as a woman. HRT is most certainly a privilege; some states and even entire countries have banned it, and some people cannot have it for health concerns, not to mention how expensive it is. Thankfully, I had amazing support from my mom who helped me find a doctor who could oversee the treatment and write an Rx, my mom would buy me a box of both Estradiol and Spironolactone every month, and when we moved to the US, she bought me a stockpile to have while we found a doctor here. As time went by, I became the person I should have always been, both inside and out, I really cannot express how grateful I am!

Everything went just fine having found a doctor who could oversee my treatment, just one street away from home. But if you have read my previous posts, you may know I began having a hard time, mentally. The usual routine visit with my doctor goes as follows: I get some labs done at least two weeks before my meeting; it’s always interesting to see how my testosterone is just dead on the ground, not even there, lol. During my visit, she begins by asking which changes I’ve noticed in me since we last met, it’s always hard for me to tell, I don’t know why, I just know I love the overall changes. I mention just a small aspect and we move on. She then asked me about pill compliance, to which I respond no doses missed. Next comes mood changes, self-harm thoughts, I deny. Some more questions, enough water? standing up frequently? I nod. Lastly, a quick physical examination and that’s it, return in six months. I don’t think I have ever told her the complete truth.

Drinking enough water as a trans woman is very important, the meds we take can be very hazardous to the kidneys. Those meds can mess with arteries and cause blood clots, and spider veins therefore it is important to not sit for long periods. I experience frequent fainting, usually when getting up or stretching, which has led my mom to believe I might be anorexic or maybe it’s the HRT meds that are affecting me negatively. I however think I might be lacking in some vitamins and a proper diet since I’ve had these episodes long before HRT, my earliest memory 13 years old, 2018. Anyway, I shared this with my doctor who hurried to grab the blood pressure meter cuff and told me to lie down for a while and then stand up slowly.

I have no explanation for my frequent fainting, it’s just so weird. Almost every time I get up, immediately my sight goes dark, like tunnel vision starting from the edges to the center until everything is black, can’t see anything, this lasts max five seconds. At this point I begin feeling very weak and need to rest on something, I feel an annoying pulsating sound in my head, like my heartbeat. Another five seconds, after which my sight is back, any weakness is gone, I regain balance and can move on like nothing ever happened. This can also be triggered somewhat on purpose, by stretching, I can usually feel it coming and thus know when to stop, sometimes out of curiosity I’ve tried not to stop, I lose consciousness entirely, just drop dead to the ground, no hands. This happened once, in 2018 in front of my entire family one Sunday, I stretched, overdid it, and fell. People said my eyes were gone, I was gone. Out of nowhere, I get up, like nothing happened, not dizzy, nothing, just annoyed everyone around was hogging me, trying to help, really. By that time I had become accustomed to it, just wait ten seconds and get over it, but I had never fully passed out. I usually can hear and reply to people, that time I felt unable to speak or move. My mom got really scared. Some time later we went to the doctor to discuss this issue and all I can remember is an oxygen meter and her pressing my fingernails really hard, telling me they didn’t recover their color quickly and that I needed more vitamins.

Doctor told me to drink enough water and to be careful when standing up, to do it slowly. When I returned home I checked our visit log, every single response ever is there, I located the vitals of the little test she did, and scrolling further down she wrote that my heartbeat increases when changing position but not my blood pressure, however, what was written after was a little scary. She wrote she might consider lowering my Spironolactone dose but my testosterone might increase. To avoid this from happening I was determined to improve my water intake habits; I got myself a water tracker app and tried my best. It didn’t work, I am terrible at staying on top of my water needs, I don’t know why, not even with the app I could do it. During our next visit, I just told her the fainting had gone away somewhat. Notes say: “ She has been drinking plenty of water. No dizziness, no lightheadedness.” I feel very, very stupid, but that is not the only time I’ve lied to her. August 2023 was when my suicidal thoughts came back, the beginning of a very draining time. I had my meeting with her on the last day of the month. I denied the suicidal ideations question. As I turned sadder I began forgetting doses, just the evening dose, both doses, both doses two days in a row; I kept denying having missed doses. I feel very ashamed, and I feel the need to come clean about everything.

Yesterday I began feeling tingling in my hands and feet at around 8 pm, at first I thought my position on the couch caused them to go numb, but then I stood up and moved around, and the feeling remained, it’s now 9 am, still feel it. I couldn’t fall asleep; out of nowhere I remembered I could purposefully trigger the full fainting by stretching, somehow I thought it would help me fall asleep faster if I just passed out. I stretched, multiple times, but it didn’t happen; nothing weird, I don’t blackout a hundred percent of the time. Staring at the ceiling I began detailing in my mind the two types of fainting, when standing up and when overstretching. Halfway through I had the brilliant idea to type out that list to ChatGPT and have it tell me what those symptoms amount to; it is such a GPT prompt, I have no idea how I never thought of it before. Anyway, it’s AI, not a doctor, so my research wouldn’t stop there.

I read some articles from the NIH and the AI seems to be accurate. Anyway, I finally know what my near-fainting might be, Dysautonomia; I’m so happy to know after all this time. I definitely want to tell my doctor that I keep experiencing the fainting. I went back to my visit notes from August 2023, my mind was so focused on the thought of my Spironolactone dose being lowered and my Testosterone levels increasing back then that I glossed past the beginning of the bullet point: orthostatic symptoms.

I really need help, I know I can’t get past my psychological problems on my own, perhaps my doctor could refer me somewhere, but I can only imagine what would happen if I told her everything. Because of the fainting, she might lower my doses, but because of the suicidal thoughts she might take my meds away altogether, and she’d probably have to call my mom and get her involved. But I think that’s the best thing for me right now, she’d be a third party who would explain to my mum who refuses to recognize the state I’m in. And about the meds, I don’t even take them because I forget, so what I’d lose—I know that’s not really how it works. Whatever happens, it will be significant, but it will really help me out. For now I’m glad to finally have something to call these weird episodes.

I hope everything will be fine.

Update 15:00

I decided to grab the blood pressure monitor and run one of the tests I had been reading about. It consists of laying down for at least five minutes, take BP. Stand up as normal, take BP after one minute standing, and again five minutes after. I found that my blood pressure increased, a lot.

Reading format: Laying down / delta / after standing up / after 5 min

SYS: 106 / +48 / 154 / 124
DIA: 62 / +25 / 87 / 85
BPM: 70 / +47 / 117 / 105

POTS diagnosis +40 bpm (until 19, onset 14) / I got +47

My heart rate increased by 47 beats per minute after standing up, more than what’s required for a POTS diagnosis. I’ve always thought my near-fainting was just a little more extreme case of what everyone experiences, nearly everyone can feel dizzy after standing up sometimes. Looking at the numbers, I mean, I realize how serious this is, and I just write it off as a little 15-second annoying moment. From lying down to slowly sitting on the edge of my bed to standing up my bpm went into a little tachycardia from 70 to 117! When I walk with my mom in the park my Apple Watch reports my bpm to be +30 that of hers, and we are walking at the same pace. I don’t know, there’s something significant going on, and I promise to tell my doctor about it, perhaps show her this post.

Update Monday 5, 4:10

I have been reading about common symptoms of POTS such as intense fatigue, a lingering pain all over, nausea, and of course the near fainting, and loss of vision. And I experience all of this, and I never thought those symptoms could be related to my near fainting, I mean, even the fucking massive hiccups I get for like half an hour sometimes are related to dysautonomia, my hands getting red at times, and my need to lay down and not do anything from intense pain and tiredness, what my mom loves calling ’ laziness’ once every bloody hour. I don’t know how I could feel so much general pain and think is normal; it’s like being sore all over, limbs feel heavy, lots of tingling, and pretty much ignored it. My experience showering and washing dishes I detailed in my autism post, both activities are done standing, and I hate them, I always sit down to do things when I can. When my mom spots me sitting she goes “why are you sitting? You don’t do that sitting, you’re so lazy,” when ironing or putting clean laundry away, I guess my body recognizes how draining it is yet my brain doesn’t get the memo. Anyway, both activities leave me drained for a long while and all I want to do is lay down.

So a couple of hours ago I had a little moment of optimism, just like I had when I began seeing my autism as my complement, traits that make me who I am; dedicated, curious, clever. I thought of dysautonomia as the key to my massive self-esteem and optimism. If you think of it, my sole existence is a challenge, painful sometimes, yet I prevail, because I push through things. Getting to my classroom involves lots of walking in the sun from my car, and so many times I’ve arrived nearly passing out, and when I enter the classroom, all sweaty, people start coming up to me to see my homework sketches; I happen to have made some fame from my sketching. But I wouldn’t be there with my amazing sketches if the night before I hadn’t pushed through my pain to get up and work. And this philosophy extends elsewhere, my drive to always deliver, most times more than I’m asked for. Like my trash can last winter; teacher wanted us to make a trash can model out of cardboard, he provided sketches, a 3D model and instructions on how to make the mechanism to make it functional, but allowed freedom to change the mechanism. I despised the way the design looked with such mechanism, I wanted a cleaner, modern look, it was a challenge, lots of planning, doing, redoing, but I did it, I didn’t give up, I committed and pushed through the challenges, which also included driving to school and back, walking to my car. It makes me so proud and reassured that despite my challenges I can still do it, I can get through this chronic pain even while setting myself an extra challenge; I feel I could do anything. So, ‘lazy,’ fuck that, I literally work out just by standing up.