Jul 21
Being chronically ill is wild because what do you mean my condition makes me boiling hot but my meds make me freezing cold and they DONT CANCEL EACH OTHER OUT? I’m sweating and shivering, feel like I have a fever rn.
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Being chronically ill is wild because what do you mean my condition makes me boiling hot but my meds make me freezing cold and they DONT CANCEL EACH OTHER OUT? I’m sweating and shivering, feel like I have a fever rn.
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Hello Potsies, I’m starting midodrine twice a day tomorrow. What should I expect!?
POTS is so funny sometimes because some of the medications make you have zero bladder control. You can go from “oh I don’t have to pee at all. I’m fine :)” to “oh my god I’m going to piss my fucking pants in front of a room full of people” in less than 5 seconds
I know why they can’t, but this is one of those days where I really, really wish PCPs had a 24/hr medical question line.
Is this just a POTS flare up? Should I stop taking my medication? Should I go to the ER? The last thing I want to do is make an ER visit, it just surpasses having to see another new doctor.
Google is no fucking help, either.
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Y'all I started Midodrine today for my POTS and I can already tell that it's helping, which is amazing. However, I'm experiencing this fun side effect of being chilly for no reason.
This would be fine, except it's giving me goosebumps I can't get rid of and more specifically, it's making my nipples so cold they hurt. Like TMI, but I'm annoyed.
My partner had some side effects when they started this medicine but they only last a couple weeks. Hopefully that will be the same for me because I would love to be able to stay on a medicine that appears to work for my POTS after only one day. That's awesome.
April 25-27 (oops.)
I don’t remember exactly why I’ve been so crap at posting lately, but here’s me catching up in one post.
April 25
1:56 am HR 98 Symptoms: fatigue, brain fog, cold feet Notes: I have ran out of spoons but I wish I could have gotten more done. My feet are so cold that they made my socks cold, even though my room is warm. My neck hurts. I have to start waking up at 9 am to take my meds on time.
6:48 pm HR 112 BP 99 over 76 BG 185 Symptoms: heart palpitations Notes: My heart has been racing and palpitating since I ate dinner (life hack: eat slowly, adrian, and your heart will be less angry at you). I’ve worried my non-potsie friends, but now I’m starting to worry my potsie friends with how high my heart rate tends to get when I exercise. I’ve been told I need some midodrine and I agree wholeheartedly.
10:41 pm HR 111 BG 223 Symptoms: chest pain Notes: didn’t take blood pressure this time, but I noticed a sharp and random pain in my left chest and felt need to record it.
April 26
7:48 pm HR 100 BP 111 over 83 BG 201 Symptoms: fatigue, heart palpitations, brain fog Notes: my symptoms today seem to be never-ending. Salt tablets haven’t helped much.
April 27
I didn’t actually journal today so I’m just gonna... go for it. Today was okay but tiring. I found out walking is not a suitable exercise for me. An extra salt tablet helped, but I think I’m going to need another one to be able to keep working tonight. I have a study session that ends at 1:30 am, which isn’t that late to me (and no one can yell at me to sleep since someone else approved the time), but usually my brain is a little foggy at that point. I need to clear my phone, vacuum my room, do a bunch of homework, finish writing something that I was supposed to have finished weeks ago... hm. Anyways. I love you all and I hope you have a wonderful day, night, etc. Happy Ramadan. P.S., I hope you say the pink supermoon! I’m convinced the gods sent it in support of lesbian visibility day <3
hey can people with POTS/orthostatic hypotension who take midodrine give me some input? i'm having trouble telling if my midodrine isn't helping, or if i need to up my dose, or even if i'm taking too high a dose and need to lower it
my prescription is for 5mg tablets and i take 1 tablet in the morning and one in the afternoon. there's definitely less incidents where i feel very light headed and get the vision static thing upon standing up. but walking/standing for extended periods sometimes gives me what feels like heart palpitations, and/or white spots in my vision that seem different from the standing up static.
what time(s) of day do you take your midodrine? if you've had to lower your dose, what symptoms prompted that/how do those differ from regular orthostatic symptoms? what does it feel like to be on the correct dose of midodrine (i.e. would you say that combined with hydration and salt eliminates or just mitigates symptoms, and to what degree)?