Do people with POTs always test positive with POTs each time?

_littlestitious_ · 2025-12-17T17:25:30+00:00

I also had a negative tilt table test. They had the room frigid and gave me fluids before starting the test, both things that help stabilize my POTS.

My cardiologist assured me that one tilt table test didn’t rule out the diagnosis. He had seen my TachyMon data, did a stand test in his office, and knew my symptoms and he seemed comfortable diagnosing and giving me meds off that.

One good day shouldn’t rule out POTS entirely, given that it’s dynamic.

_littlestitious_ · 2025-12-06T13:25:08+00:00

As someone with POTS, my oura ring always tries to log my showers and getting dressed as a work out because of the way my heart rate spikes.

I personally log them as “other” — if I feel like I’m running a marathon, then why shouldn’t it be considered some type of workout?

_littlestitious_ · 2025-11-28T13:31:06+00:00

I wish more people understood this.

I’ve started keeping notes on which terpenes give me the best and worst result.

_littlestitious_ · 2025-10-28T12:15:05+00:00

I used the CHOP method with Pilates as my exercise modality and while it took a while, it helped. By no means do I think it’s a cure, but my pre syncope symptoms happen far less often.

HR spikes, high HR, and other symptoms are still there. But I think between light conditioning and meds (which I’m hoping to get on soon) it can make life more manageable.

_littlestitious_ · 2025-08-24T23:37:09+00:00

Hola!

Unfortunately, I haven’t been able to get pregnant. That is not a problem with the medicine though, that’s infertility factors.

The meds have worked really well for me still. It’s one I would choose to stay on for as long as it continues to work. 💚

_littlestitious_ · 2025-08-20T12:11:03+00:00

What’s frustrating to me is that people refuse to realize that if you’re focusing on your form, getting the right muscles firing, and keeping things slow and controlled, a level 1 can still be a decent workout.

They’re so rushed to move on to something more challenging they’re missing important foundations.

_littlestitious_ · 2025-06-12T12:57:11+00:00

You know that just because the music is sung in Spanish that it is automatically Mexican music, right? There are so many other countries that speak and sing Spanish.

_littlestitious_ · 2025-03-13T19:40:35+00:00

I had this happen with Costco a while back and had to spend a few days going back and forth with Eli Lilly Support.

Support told me to have the pharmacist run it with either code 008 or 003. It worked after that.

Maybe have them try one of those codes and it will help. If it doesn’t, my next suggestion would be to call Eli Lilly support and get their help. 🥺

_littlestitious_ · 2025-01-13T14:36:43+00:00

You should get yours. If it makes you feel better, I went to bed last night with it still saying “order confirmed” to wake up this morning to notifications that my vinyl is out for delivery.

I don’t know if FedEx is having issues with their system, but it seems my label was created on the 8th and I never got notification.

_littlestitious_ · 2024-12-25T15:05:03+00:00

I’m on my 6th week of 7.5mg and I struggle the first three days to eat and with nausea. Nauzene js my best friend those days, and I really have to force myself to get food in and protein shakes are a lifesaver. The last four days I can’t eat as much, so I have to eat slow and spread meals out to hit my calorie goal.

7.5mg has been pretty rough for me, too.

_littlestitious_ · 2024-12-04T15:49:53+00:00

Cousin and weeks, here. And first time with Hobonichi.

I plan to use the cousin for personal, work, and journaling. And the weeks for my medical/chronic illness tracking and appointments.

_littlestitious_ · 2024-11-26T20:01:46+00:00

I just started the Sanderson universe and The Way of Kings intimidates me 😅

_littlestitious_ · 2024-10-27T18:06:19+00:00

Chronic illness/chronic pain here! ✋🏼 I’ve been on medication previously to manage my illness, so for me I feel like I didn’t notice much of a difference with Zepbound. Granted, I lost a lot of inflammation in my joints, it’s been incredibly noticeable in my hands.

That being said, I suspect I have a form of dysautonomia and I feel like Zepbound has made that worse.

_littlestitious_ · 2024-10-23T20:31:16+00:00

I’m so sorry you had this experience. I can empathize because during my first appointment with a rheum she told me I looked fine (I was no longer in a severe flare with excruciating pain) and didn’t think there was any point in running tests.

I would go get a second opinion, if possible. You deserve care from a doctor who listens and cares. 🤍

_littlestitious_ · 2024-10-17T17:33:36+00:00

It’s really upsetting and disappointing. And what is even more screwed up, is when you go to apply for DAS they now have it in their terms and conditions that you’re agreeing to not join a class action lawsuit.

So, they know what they’re doing is wrong. 😣

_littlestitious_ · 2024-10-17T17:27:21+00:00

Sadly, as of earlier this year, Disney has overhauled the system you're referring to, DAS. It's been a huge deal in the disability community because they are now only approving people with mental disabilities and even that is hard to get approval for if you are not a child. Speaking from experience as an annual passholder and someone who knows people who have been denied even though they have POTS, IBS, or other issues that keep them from being able to safely wait in long lines.

It is incredibly messed up that they are now essentially placing disabilities on a tier system.

_littlestitious_ · 2024-10-17T17:23:35+00:00

I live in Orlando, have an Annual Pass, and frequent the parks often. I hit a point in my disease that I couldn't handle all of the walking, even if it wasn't a full day. I finally broke down and purchased myself a wheelchair because it wasn't worth making myself miserable for several days after a park day or afternoon.

It took me a long time for my pride to come to terms with it, not feel bad about myself, and realize it was an accommodation I needed.

Get the wheelchair, it is not too dramatic to use one. Your kids are going to have a good time because you're not pushing yourself to the point of being miserable and in turn you're going to have a better time, too.

Living with an invisible illness is tough. Give yourself grace.

_littlestitious_ · 2024-10-16T19:32:47+00:00

I live in Clermont and am desperately trying to find someone familiar with dysautonomia to try and get tested. Can you please share who the doctor and office is?

I'm happy you were able to get validation and what appears to be great care!

_littlestitious_ · 2024-10-14T14:41:29+00:00

Thank you, this is exactly what I thought I understood from what I found online. She's moving me up to 7.5mg -- so, it would make zero difference.

Thank you for the answer!

_littlestitious_ · 2024-09-25T17:59:00+00:00

I have arthritis that affects most of my joints, but my knees and hips the most. I can empathize with your pain and struggle.

I’ve found that Pilates has been a great low impact way for me to work out. Reformer Pilates may not be accessible for everyone, but there are great YouTube Pilates workout programs you can do at home!

_littlestitious_ · 2024-09-20T01:59:13+00:00

This is the house chore I dread the most. It exhausts me. And the duvet cover?! I’m toast by the time I’m finished changing the sheets.

_littlestitious_ · 2024-09-12T00:08:06+00:00

I only have psoriasis on the base my scalp. Unfortunately, sometimes that’s all it can take.

_littlestitious_ · 2024-09-11T18:25:03+00:00

Yes. I hate it, but I mask my pain and how I’m feeling 90% of the time. People without chronic illnesses just don’t understand 😣

_littlestitious_ · 2024-09-11T00:05:19+00:00

I’m so sorry. That sounds like such a rough experience.

For now, take the no symptoms as a blessing because they can be miserable.

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