u/Status-Tart-4654

guys guys guyssss hear me out!!

violet tells bodhi his signet doesn't work on venin. bodhi has watched xaden defend their group FROM venin WITH his venin powers all this time. what if he decided to turn venin because he thinks he could possibly use his signet on the venin while staying "good" like he sees xaden trying to do? maybe he thinks he can save everyone like xaden? and then he realizes he's in over his head.

I am getting onto this amazing community where I have lurked and read a lot of extremely helpful things. At this point, you guys have helped me more than all of my combined doctors appointments, so I thought I would go ahead and write this because one of you may have insight, or at least share my problem.

I'm 24 years old with a bmi of 20 and a reasonably low resting heart rate, typically around 60 bpm. I have been aware of my racing heart when I stand up for months now, but before that I only knew I was exhausted, in pain, and sometimes feeling faint just from standing. For some reason I believed I was just out of shape instead of being concerned. Now, with knowing to check my hr on apple watch, I have learned that my heart rate can get up to 146 just from STANDING.

I've been to the doctor, and we have started the process of getting officially diagnosed, but it seems that new requirements are being introduced at each doctor's appointment, which draw everything out so much longer than I can handle. We got the labs and the holter monitor done, so now I need a heart ultrasound. Why didn't I get the heart ultrasound after the last appointment? Maybe this is standard protocol but it feels so drawn out when I'm struggling just to exist right now. The doctor prescribed me propanolol for the heart racing and suggested it would help with the fatigue, but now my insurance has flagged it and delayed it because they aren't sure I need it. What I need is to be able to stand up throughout the day.

We are also addressing hypermobility concerns, since I'm apparently an expert at shoulder joint subluxation, which I thought was normal until I realized everyone else in yoga does not have shoulder joint bulges on either side of their bodies when they raise their arms up. Mobile kneecaps, insane frog-like splayed fingers, the works. I can't afford genetic testing atm so this is gonna have to be on the backburner for now.

My labs came back normal. There is a secondary issue, though. My cycles have always had a tendency to be long, sometimes up to 73 days. They regulated it with birth control for a bit in high school but the side effects were rough on my autonomic body and so I stopped it. My cycles regulated at 35 days and I loved it. No issues with pain and barely any cramps. I was happy. Then I got on birth control again, and my cycles disappeared with that. Well, fast foward to a couple years ago, where I realized that I have a really hard time taking pills at the same time daily and that if birth control makes me more stressed about getting pregnant (bc of missed pills) than other contraceptives, what am I doing? So I got off the pill, and my cycles slowly but surely climbed back down...

Until the beginning of this year. I started a new position that, I guess, was the perfect storm for ALL of the issues. I was on my feet in a stressful environment for long (8+) hour days, and I stopped being able to EXIST like I always have. Granted, I can recognize these symptoms going back years. However, it has NEVER been this bad. I am now on the 145 day cycle mark. I quit that job and now work a lovely one, but my symptoms have not abated; if anything they have gotten worse. Now let me tell you what's going on at the doctor's office:

We got the hormones back. Testosterone is at 37, estradiol is at 32.1, and progesterone is at less than .50. Thyroid is normal. Anyway, the doctor is now trying to treat me for PCOS and put me back on the pill to regulate me. We already did a progesterone test that did NOT induce a bleed, so I am concerned that my body is actually not experiencing PCOS but rather stress-induced amenorrhea. Wouldn't this line up with my symptoms?

To be honest, I'm worried my doctor doesn't know much about this condition. She's so focused on the PCOS, and she doesn't really have any guidance for how to make me feel better daily. I'm happy for the beta blockers if they ever come through, but she told me to be careful how much salt I consume because too much salt gives HER diarrhea. I'm sorry, but isn't consumption of salt supposed to save my life or something? Sometimes salt can make me feel kinda normal for a while, and I've never gotten sick from it. Does she know that's part of the POTS protocol? I'm just feeling really alone on this right now.

My body makes me feel like I'm sprinting when I stand up. I have basically stopped exercising because even going on walks makes me extremely tired afterwards. This heat wave is brutal. I used to be an active person, so my legs ache with the inactivity but I'm just so tired. And now my medicine that's supposed to help is delayed, I'm having to advocate so much for myself just to try HRT instead of the pill, and I can't even stand up to make food for myself most days. My laundry sits on the bed for weeks because putting it away is a major commitment. And I feel like I'm going to go mad before this is over.

Sorry for the long explanation. I'm trying to put all the pertinent information out there because the informative posts on this sub have helped me more than anything else. So, that being said:

Does anyone have amenhorrea with POTS? Anyone had a similar situation to mine? Any advice?

Hey everyone! I'm u/Status-Tart-4654, a founding moderator of r/bellagracemagazine.

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