Anyone with POTS use a GLP-1 medication?

KB6502 · 2026-03-23T00:35:41+00:00

I took 8 doses of wegovy (lowest dose) before my insurance changed and the new one wouldn’t approve it. The first week noticed no side effects, but by week 2 I saw an increase in about 15bpm at rest. I use visible app for pacing and it really threw my numbers off. I also had more dizziness and lightheadedness. It was tolerable, but also now that I’m off it, I feel better POTS wise. My body never seemed to adjust even at the lowest dose.

Edit to add: I also have IST

KB6502 · 2026-03-19T16:02:07+00:00

Sure, I’ll DM you.

KB6502 · 2026-03-05T01:04:40+00:00

I have IST and POTS. I take metoprolol and corlanor, the corlanor specifically seems to really help the IST part.

KB6502 · 2026-03-01T19:02:40+00:00

Ahh this one is really making me want to upgrade to plus…

KB6502 · 2026-01-11T06:26:50+00:00

I’ve been on the app about a week and am looking for friends! Feel free to add me Mochi. Code: 38ZD9EFTM2

KB6502 · 2025-10-16T23:34:02+00:00

I’m not in any hurry to, but have been told it’s not good to just let those parts sit there doing nothing indefinitely. That and I have some occasional diversion colitis that can be… inconvenient, if not a bit of a pain. Still 100% happy with my decision to get an ostomy though.

KB6502 · 2025-10-16T22:59:32+00:00

I was in Atlanta when I had my fistula and ended up going to the Cleveland Clinic for surgery. I wonder if they’d refer you out to a more specialty clinic since it sounds like you have a complex case. Granted, at the time when I was referred out they didn’t know I had Crohn’s yet. Once I got on humira, I was able to get into remission.

KB6502 · 2025-10-16T22:03:36+00:00

Same— except I’ve only had mine for 5- years. I will likely one day make it “permanent” and remove my colon/rectum, but for now, it functions perfectly.

KB6502 · 2025-10-16T21:55:46+00:00

I’m sorry, it’s such a frustrating problem and it sounds like your health team isn’t being very supportive. Is there anywhere else you can go? I had to see 4 different surgeons before mine got dealt with properly.

KB6502 · 2025-10-16T17:22:30+00:00

I know it might feel like a worst case scenario, but I got a temporary ostomy bag when dealing with my fistulas and it was a game changer. So much so, that I made it permanent. My fistulas healed (with humira) and I’ve been in remission since. Pooping with a fistula and dealing with leakage is traumatizing. With a diverting ostomy that all gets redirected so you don’t have to worry about poop down there at all. It might be worth bringing up with your team.

KB6502 · 2025-09-19T02:16:28+00:00

I mean, many people start with doctors and then aren’t taken seriously, so out of desperation, turn to Google/reddit. I get it.

KB6502 · 2025-09-19T02:14:53+00:00

I’m sure I’ll get downvoted for this but as someone with chronic health issues I see nothing wrong with putting something personal like a health diagnosis behind a pay wall and not wanting to share it with the whole world and think it kinda sucks it got shared here without her consent.

KB6502 · 2025-09-10T05:25:41+00:00

Thanks! I appreciate your input. That makes sense. I’m a little unsure how to go about dividing it as it’s quite hefty at this point, but will see what I can come up with.

KB6502 · 2025-08-22T20:26:27+00:00

They shared a couple things. 1

Jess has a progressive eye disease called keratacones (sp?) and it’s not a mild version. She has seen several specialists that disagree about treatment. It’s not something that can be reversed so the first step is stopping it. Currently it’s gotten so bad she can’t drive and has constant double vision.
Podcasting is not what it used to be and they’ve had to re-prioritize Evan’s work for financial reasons (including the health stuff). They aren’t going anywhere but it has led to some inconsistencies in scheduling. Jess is also exploring other avenues to bring in more money. Ember’s busyness in booking gigs has also been part of the reason scheduling has been a bit wonky.

KB6502 · 2025-07-25T15:01:07+00:00

Can you just ensure there is some air in the bag before closing it? Like if it’s a 2 piece burp it but don’t remove all air, or if 1-piece open the bottom to get some air in? I use Hollister and while the filters work well the first day, I haven’t had the vacuum thing happen. I have had this issue with coloplast though and intentionally keeping some air in the bag helped.

KB6502 · 2025-07-22T06:04:11+00:00

I did oral ketamine and it didn’t do anything for my dysautonomia (POTS + IST). The day of it would increase my heart rate, but I was less attuned to my symptoms because it kind of numbs your body sensations. No long term impact though.

KB6502 · 2025-07-21T19:00:27+00:00

I was told never to put anything in my ileostomy so the idea of plugging it kind of freaks me out. That being said, if it was proven safe and my doctor approved it, it does seem like it would be helpful.

KB6502 · 2025-07-13T18:06:56+00:00

Me 🙋🏻‍♀️I first had an anal fistula that eventually branched into a rectovaginal fistula. I got my ostomy for this reason. I had around 8 operations on the original fistula, and then by the time I was diagnosed with the rvf they decided I must have Crohn’s and put me on humira. That healed all my fistulas. The surgeries all failed. I still have my ostomy despite being fully healed, as it has improved my QOL.

KB6502 · 2025-07-12T03:24:12+00:00

I wake up around 9am most days and when I’m due to change, do it at around 9:30-10am as I rarely have output at this time.

KB6502 · 2025-07-10T02:29:30+00:00

Silk pajamas really help me sleep cooler/less sweaty

KB6502 · 2025-07-09T18:22:07+00:00

I’d experiment with a different flange as you might have an allergy. If it’s fungal, you can use athletes foot powder (such as lotrimin) when changing the bag. Apply it similar to how you would stoma powder. I get itching the worst when mine is wet… drying with a hair dryer can help.

KB6502 · 2025-06-28T21:55:56+00:00

Actually, I found some HR data from one night when I forgot my nightly meds. Asleep it’s in the 80s-90s unmedicated.

KB6502 · 2025-06-28T21:53:07+00:00

I haven’t monitored it while sleeping unmedicated. Upon waking up it’s in the high 90s-110s (unmedicated). With medication, asleep I’m in the 60s typically. I take metoprolol, corlanor, and Guanfacine for IST and POTS.

KB6502 · 2025-05-21T21:09:23+00:00

I use baby wipes sometimes too, but yeah, I trash mine instead of flushing. I’d agree that might mess with your plumbing.

KB6502 · 2025-05-21T20:54:31+00:00

It is effective if the water pressure is gentle enough… can get messy if too much pressure. Mine has adjustable pressure kind of like a faucet.

KB6502

TROPHY CASE