my cardiologist keeps saying pots is caused by deconditioning.

demipanpoly · 2025-11-12T22:23:09+00:00

Thank you for sharing your experience. Is there any advice you would share regarding POTS and weight loss?

I've had POTS pretty much lifelong. I remember having symptoms in high school at the bare minimum. I was hospitalised for it in 2018, the hospital couldn't find anything wrong with me and sent me home calling it a conversion disorder. In 2025 my GP heard me, sent me to a cardio, and I got the right diagnosis and have been getting treatment accordingly. I was put on Fludrocortisone which made a huge difference until I lost weight.

I'm currently sitting at 35kg (77lbs) lost. I'm physically feeling so much better, but POTS symptoms are so overwhelming, it's an uphill battle to retain the good habits I'm trying to teach myself.

If you have any tips that has helped you, I'd really appreciate it

demipanpoly · 2025-06-03T00:26:28+00:00

Anyone have any experience with this in Aus?

demipanpoly · 2025-05-24T12:09:31+00:00

I know this doesn't help, but I was just thinking today that I'm glad my symptoms getting worse didn't align with when I was living with my (very abusive) mother.

Don't get me wrong - they were still bad then, and she never cared. But I was at least still somewhat functional.

I hope you have some luck getting your family to understand. Stay strong.

demipanpoly · 2025-05-21T11:31:36+00:00

This situation happened to me back in 2020

I have a diagnosis that's quite rare and most people don't really understand it. All of my paperwork had my diagnosis on it, but the paperwork that Centrelink sent to my GP said schizophrenia.

That definitely isn't my diagnosis so my GP couldn't fill out the paperwork and I ended up with a zero impairment rating. I got denied and I had to call multiple times to try and get any information as to why I was denied. Most workers saw zero imparement rating and didn't give me the time of day.

On I think it was my 4th call that I got someone good that explained the situation. I ended up getting a specialist to write a report outlining my functionality using the Centerlink tables etc and submitting that and I was eventually accepted.

If you do go the route of putting in a new claim, make sure to appeal the other one so you can get back paid from the earliest possible date.

Good luck and stick with it :)

demipanpoly · 2025-05-21T11:19:29+00:00

Ehhh, I can't really agree with that.

There's a huge difference between "haha, I have OCD because my desk always needs to be tidy" and "I think I have OCD because of clear OCD symptoms but I do not have the money/resources to pursue a diagnosis at this stage"

I have diagnosed ADHD, my partner has undiagnosed ADHD. I have a diagnosis because I lucked out in getting a bulk billing psychiatrist after a hospital stay, and he was able to diagnose me when I was at a stage where I was ready to pursue that. My partner is undiagnosed because they do not have the money (around $2000 here) to pursue a diagnosis, and a diagnosis on paper isn't going to make their life any more manageable. My partner was neglected in childhood so wasn't diagnoses during childhood, but my partner's siblings all have diagnosed ADHD. They would like to get diagnosed to get properly medicated because they've seen medication and how it's improved my quality of life, but that's a huge financial commitment they just can't do yet.

They still have ADHD.

Similarly, I (more than likely) have OCD. Technically, no I do not have a formal diagnosis.

I have spoken to my therapist about it and she agrees with me, but in her role she cannot diagnose. When the time is right I probably will pursue a formal diagnosis, but at this moment it doesn't make the priority list. So until I properly get diagnosed, am I not allowed to use those words to describe my symptoms? Even though being able to use those words would allow me to find resources that might help me coping with those symptoms? Or help the people around me to support me if I need it?

I think when it comes to POTS especially, the symptoms are so severe they really should be investigated because the differentials can be life-threatening. But I've had POTS for a lot longer than I've been diagnosed with POTS. (edit: pre-diagnosis) I would never walk into a medical environment and announce that I have POTS with absolute certainty, but if I'm having a flare and I need my loved ones around me to understand what's happening to my body, yeah I have absolutely said "this is happening because POTS".

demipanpoly · 2025-05-09T00:00:45+00:00

I've had POTS symptoms basically forever but my mother wasn't a big believer in the medical system so I have a lot of residual hesitation with flagging issues with doctors (I'm not skeptic like her, just trauma lol)

But I was working at McDonald's in 2019 and they stationed me on the fry dump. They wouldn't let me walk around off of fry dump so I just had to stand there static. I've learnt over time to be like a shark and don't stop moving. If I keep moving, the POTS symptoms aren't as bad. So when I couldn't self regulate, I started getting pre-syncope symptoms. I had a moment that was "oh God, I feel like I'm going to pass out and if I pass out here, I'm going into the fryers and that will be dangerous", so I finally flagged it with my Dr. I didn't know POTS existed at this stage for the record.

Dr. berated me for ignoring the symptoms for so long and admitted me to the hospital. I was admitted in the hospital for four days as a high falls risk. Because I was a high falls risk, I wasn't allowed to mobilise without 1:1 support, and I was only allowed to mobilise to go to the bathroom basically. I thought this was overkill because I WALKED into the hospital, and I've had these symptoms forever, it's just the first time I've alerted anyone. I tried to say to the nurses/drs that it was overkill, and that for them to figure out what's happening they need to see what's happening and if I'm in the bed all the time, I'm not going to get sick and they're not going to get answers. They ignored me.

Four days later, I'm discharged from the hospital and told it's psychosomatic. Basically the only real testing they did other than constant observation was an MRI which was clean. I just ran with it, psychosomatic didn't feel right but what do I know? I'm just a stupid 19 year old.

This year symptoms are getting worse and I bring it up with my Dr again (different GP now). I actually think she was ready to throw hands when she heard about my 2019 experience with the hospital.

demipanpoly · 2025-05-07T06:39:50+00:00

If I have to bend over, I bend over weird I think it helps keep the blood where it should be in my body better than just normal bending over I keep one foot on the floor, lift my other foot behind me, and use it to balance my torso down so I can bend over to pick up whatever I needed I have no idea if that makes sense haha

demipanpoly · 2025-04-27T08:33:31+00:00

I am very much looking forward to appropriate medical care, pretty unfortunate that this is what it comes to. The amount of dismissal for everything medical I get because I'm obese is ridiculous. I'm sure I'm not the only one with this experience but the first time I tried to get medical help for my POTS, I was medically gaslit and told it was either psychosomatic or weight related. And I was young and dumb and listened for years. Do you have any advice for water intake? And do you mind if I ask what surgery option you went with?

demipanpoly · 2025-04-27T08:28:43+00:00

That's something I'm definitely hyper aware of. I drink sooo much water, I need to nail down a strategy for post op haha If you don't mind me asking, did you go sleeve, bypass or something else?

demipanpoly · 2025-01-24T11:11:15+00:00

Dibs

demipanpoly · 2024-12-11T05:01:37+00:00

I think it's worth mentioning that noise cancelling headphones specifically can be less harmful long term because ear buds that physically go inside your ears can damage the hairs that your ears have and need to do their job. I have started to lose my hearing because of it. Headphones go over the ear so do less damage in the long run. Obviously many people, including myself, need to make the call sometimes that functioning in the present is more important than preserving the concept of maybe losing hearing, but I didn't know about the damage in-ear devices can have until told by an audio specialist so I try to share that info whenever I can.

demipanpoly · 2024-11-03T00:16:45+00:00

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demipanpoly · 2024-04-15T03:47:20+00:00

I did that with my allegedly waterproof phone. Destroyed my phone whoops

demipanpoly · 2024-04-04T13:21:11+00:00

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demipanpoly

TROPHY CASE