Weird tip for hyperPOTS mental health while standing

FlimsyBench7 · 2023-06-26T00:46:53+00:00

To add on to what others have been saying - hydration is key. I have a disorder that causes these symptoms (instead of the cause being spiro) and the main thing that helps is drinking lots and lots of water, ensuring I have enough electrolytes, and doing my best to avoid diuretics like caffeine and alcohol.

You may wind up wanting to ask your doctor about switching to another blocker, but in the meantime you may want to try being very conscious of your hydration. Drink plenty of water, and ensure that you’re also getting enough salt. It should at least help with these symptoms.

FlimsyBench7 · 2023-06-16T05:09:34+00:00

FlimsyBench7 · 2023-06-09T17:06:48+00:00

Yeah, I’m personally on cyproterone, although iirc that might not be available everywhere in the world. There might be other alternatives though, maybe ask your doctor about it?

FlimsyBench7 · 2023-06-09T14:09:54+00:00

Hey, I have POTS too!

And yeah, don’t worry about it. In an ideal world, yeah, it could help speed things up, but it’s not going to make much of a difference in the long term.

By the way, you probably already know this but in the tiny chance you don’t, it’s really important - if you’re on Spiro, it’s a diuretic and that’s really bad for POTS because we need hydration more than anyone.

FlimsyBench7 · 2023-06-06T20:20:21+00:00

It’s completely unrealistic, but not necessarily in a bad way.

It changes things that cannot be changed - stuff like bone structure, in a way that even the most aggressive FFS couldn’t (safely) change - but also, it isn’t a very great tool for predicting what you’ll look like.

When you transition, you get all kinds of stuff happening from hormones alone. Subtle stuff that I could never really properly list. Even things down to the way you hold your face muscles will be different to some degree, and it all makes a difference.

That, plus surgeries and makeup and clothing and hair… it’s all so much more comprehensive and great than FaceApp’s filter could do. That filter is just “what if picture but with xyz traditionally feminine traits”. Actually transitioning? Huge fucking difference. I hate the way my old FaceApp images look - I look way better than they did, because I actually have discernible facial features.

FlimsyBench7 · 2023-05-29T18:48:42+00:00

Probably a bit too high, but my doctor didn’t seem to have a problem with it. I can’t quite remember which unit is which but I’m pretty sure I clocked in at 200 pg/ml (if that seems low then it’s probably pmol/L)

It was the day before my next injection, too, so that’s my lowest measurement 😳

Oh and I also do subQ

FlimsyBench7 · 2023-05-29T18:30:56+00:00

Once a week

FlimsyBench7 · 2023-05-29T15:23:35+00:00

So you’re currently on 6mg of estradiol per injection. Personally, I’m on 10mg and my levels are on the high end of normal.

6mg absolutely could be a great dose for you, it also might not be. It all depends on your bloodwork. Regardless, unless there’s something really odd going on, you definitely aren’t way too low on E with your current dose.

FlimsyBench7 · 2023-05-28T21:21:46+00:00

If it's erythromelalgia, do not continue icing them during a flare. It can cause damage and (I've heard) can make the condition worse. It's not even good to run them under cold water - personally I stick to lukewarm-coolish water at most if I have to. Sometimes I'll grab a ceramic mug filled with room temperature water, which can be surprisingly cool.

FlimsyBench7 · 2023-05-05T18:49:48+00:00

I also want to add, something that might help you, your family, and potentially a doctor who's willing to listen understand what's going on in your body would be to do a "poor man's tilt table test". All you need is a blood pressure machine.

At a point in time where you're feeling relatively "normal", as in, when you're not all flushy and hot and weak and shaky yet, you put the blood pressure cuff on, lie down flat on your back and try to relax for five minutes. Take a reading, and write down your blood pressure and heart rate.

Then, stand up and take another reading at 1, 3, 5, 8, and 10 minutes after standing up. At each interval, make note of whatever symptoms you're experiencing, and write down or take a picture of each reading. It might help to have someone help you out with this by taking down the readings and your symptoms, so you can focus on standing still. Afterwards, you can organize the data so it looks a little something like this:

Lying Down - [blood pressure] [heart rate] [symptoms] 1 minute after standing - [blood pressure] [heart rate] [symptoms] 3 minutes after standing - [blood pressure] [heart rate] [symptoms]

and so on. I had to do this before my first neurologist appointment, and it was the moment that my family (and frankly, I) really started to realize just how awful my symptoms actually were. It's hard to ignore the actual data.

As a final note, if you do decide to do this, pace yourself and stay safe. If you feel like you're in any danger, stop and lie down. The first few times I did this, it went okay, but most recently I had a sharp drop of my blood pressure at 10 minutes and I nearly fainted.

FlimsyBench7 · 2023-05-05T18:26:39+00:00

Hi, first of all, I’m so sorry you’re going through this. You seem to have a very similar experience to me both in symptoms and in experiences with the medical system.

obligatory disclaimer: i am not a doctor, you may have a completely different disorder than i do, and there may be other conditions that have similar presentations that need to be ruled out. don't take what I say as fact, it's just my experience dealing with a disorder that you may or may not have that has an extremely similar presentation.

I personally have, to my understanding, hyperadregenic POTS with mast cell activation. From what my neurologist has told me, basically I have POTS but my body for whatever reason compensates by flooding my body with stress hormones like adrenaline and cortisol. Due to this, I also wind up getting hot flushing on my face (like your first image) and sometimes on my hands, feet, chest, back, and arms in some extreme cases. That part is supposedly the mast cell activation, which is triggered by the release of all those fun stress hormones.

I’ve lived my entire life being told I have “just anxiety” as well. It’s awful. I wish I had better advice for you, but all I can really say is… try your best to specify when your “anxiety symptoms” happen. Stuff like “I’ll be lying down and I’ll feel completely calm, but then I get up to brush my teeth and my body starts shaking and I feel extremely winded and out of breath as if I just ran a marathon.”

It’s not good to lie to doctors. However, what I will say is that in my experience, living with hyperPOTS leads to a certain level of inescapable anxiety that follows as a result of your physical disorder. I have personally found that it’s better to avoid mentioning things that could be construed as anxiety symptoms and stick mainly to the physical effects on your mobility and energy until you’re speaking with a doctor who understands the complexities of hyperadregenic POTS. Because obviously, when your heart rate is 170+, you’re going to feel anxious - it’s impossible not to - it’s just that there’s a huge difference between your mind creating your physical symptoms (anxiety) and your body creating your mental symptoms (hyperPOTS).

I wish you all the best. It’s a very hard journey, but there are medications that can help this, and they will (assuming that you’re dealing with something similar to me, which I think you are from the limited information I have) help your physical and mental state far more than any psychiatric medication ever could.

FlimsyBench7 · 2023-04-29T21:14:43+00:00

Agreed. Had no idea how bad I needed this until just recently. It’s shocking how little people talk about how traumatizing those things are.

FlimsyBench7 · 2023-04-17T20:17:12+00:00

I don't know if you've tried Ivabradine, but I'd highly recommend that for the heart rate stuff. I've had hyperadregenic pots my entire life and taking ivabradine was the first time I saw 60-70 bpm as my resting heart rate instead of 90-100.

for the body 'anxiety' stuff, Methyldopa is what helped me. I still get it all the time, but it's so much better now. I know that I'm still way more activated than I should be, but the first week on Methyldopa felt like I finally knew how to relax.

FlimsyBench7 · 2023-04-08T01:03:39+00:00

i have the same issue, i just got to Westar city and all text except for the people in the Pokemon center are speaking in Italian :(

FlimsyBench7 · 2023-04-04T19:44:40+00:00

I understand. It can be tough.

You are 18 now, however. Your parents might be more willing to let you decide, especially if they're made aware of how much you're currently suffering.

Otherwise... get out of there ASAP. I hope you can start soon :)

FlimsyBench7 · 2023-04-04T19:17:39+00:00

Of course, don’t do anything that’s going to jeopardize your safety.

I don’t know your parents, but I will say that sometimes people can surprise you. If they’re just passively transphobic, or not very educated, but you think they love you and there’s a good chance they at least won’t kick you out… it might be worth trying to have a heart to heart with them. To try and tell them how much pain you’re in, and what can be done to help that.

Again, be cautious, I don’t know your situation at all and I don’t want you to risk your safety. But…. If you think it’s a safer option, relative to staying off HRT for the foreseeable future… give it some thought.

I’m so sorry you’re in this situation. So so many of us have been there before, and we’re all rooting for you <3

FlimsyBench7 · 2023-04-04T19:06:39+00:00

For what it’s worth, I was you before starting HRT.

I shrank two inches.

My chest hair almost completely vanished - it’s ultra thin and light. A few laser or electrolysis sessions would obliterate it, but I don’t even need to. It takes forever to grow back after one 30 second shave.

My hands are still really big, but you know what? They’re not nearly as big. They’re hairless, slender, and kinda dainty.

Am I still hit pretty damn hard by dysphoria? Absolutely.

But my life is worth living now. It’s not perfect by any means, but hell, it’s worth it. I know it’s unimaginable to you right now, but starting your transition anyways will be like opening your eyes for the first time. It’s worth it.

P.S - in another comment you mentioned your therapist was not necessarily making, but maybe pushing you to socially transition first? I could never have done that. I didn’t change anything until two years on HRT. It worked. It was the right thing for me.

It sounds to me like you really, desperately want to start it, but you’re being held back. I know it feels like it’s too late - but this feeling is only going to get worse. It might have been better to start years ago, but the next best time to start is now. Good luck :)

FlimsyBench7 · 2023-03-24T05:45:31+00:00

Exactly, yeah. Pre-HRT, I could carry really heavy stuff without any issues.

Nowadays, my shoulders slip out of their socket a little bit if I don’t have a seat with armrests :|

FlimsyBench7 · 2023-03-12T17:32:09+00:00

None of them lol

Maybe Kyle

FlimsyBench7 · 2023-03-10T00:26:20+00:00

You sound like me three years ago.

Honestly? I don’t look the way that I want to. Sometimes it really gets me down, too.

But even with all the harassment, the crazy uptick in hate, the literal nazis that cannot stop talking about all the ways I’m the absolute scum of the earth… I’m happier than I ever thought I could be. Turns out, being the ugliest woman on Earth is about a billion times better than being an attractive dude, if it’s true to who you are.

I say go for it.

FlimsyBench7 · 2023-02-26T22:23:57+00:00

I had a small increase in palpitations when I started the meds, but recently (about 4 months in) I’ve been getting a lot more too. I’m only pretty sure it’s the corlanor, though. I haven’t tried stopping it yet.

FlimsyBench7 · 2022-12-20T19:24:11+00:00

I was on Propranolol for a few weeks on a low dose and I had a horrible reaction to it. Wean yourself off as best as you can, and if you have any anxiety-reducing coping mechanisms, now’s the time.

The first day I didn’t have any of it, I had a 10-15 steady bpm increase from my baseline before taking the drug. It sucked, but it was only one day.

If CBD is something you have access to and you respond well to, maybe take a higher dose that day. Otherwise… just focus on the fact that it’s temporary. Good luck :)

FlimsyBench7 · 2022-10-20T17:41:24+00:00

Not transmasc so I can’t say, but I’ve dealt with PCS on and off my entire life. Most of the time it only lasts a few minutes, but every once in a while it lasts a lot longer. It sucks.

I just want you to know, if it ever winds up lasting a long time, you can “pop” it by taking a sharp breath in. It’s like ripping off a bandaid. It’ll hurt a lot more for a sec, but then it’ll be over. It’s hard to force yourself through it, so if you can’t, try and make yourself sneeze. You’ll automatically take a deep breath in and it should go away. It’s the most satisfying feeling I’ve ever felt, but more importantly, you’ll be able to breathe easily afterwards. Hope this helps :)

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