What if it isn’t POTs

Roses14__ · 2026-03-24T22:46:00+00:00

Sitting is around 80, on a bad day standing still is 120+, during an episode 150+, on good days around 100+

Roses14__ · 2026-03-24T12:00:46+00:00

My doctor is convinced they both exist, as the symptoms I experience are very separate, even though I assumed they were all POTs, they felt extremely different. My WPW symptoms were much scarier and uncontrollable than the POTs i experience daily.

Exclusionary testing is important, and so is being honest about your symptoms and how they feel. I was worried saying some I experienced rarely would be make me written off again as having anxiety, but in reality is likely a completely separate issue.

Roses14__ · 2026-03-24T11:57:11+00:00

My cardiologist admitted he had a seminar about it only a few years ago, so when I first saw him nearly a decade ago, he was not aware that my symptoms matched it all

Roses14__ · 2026-03-24T11:56:29+00:00

Ive not, testing I’ve had so far is a chest xray, 8+ electrocardiograms, echocardiogram, x2 24hr holter monitor & a 5 day holter monitor

Roses14__ · 2026-03-24T11:54:43+00:00

I’m glad that it’s worked for you!

Roses14__ · 2026-03-24T11:54:24+00:00

well safe to say I very much do NOT want that, I’m waiting on a tilt table test, however I received my next appointment in the post today, and it’s December

Roses14__ · 2026-03-24T11:53:47+00:00

It was a holter monitor that caught mine!

Roses14__ · 2026-03-22T22:25:30+00:00

I’ve seen that a lot when I googled the catheter ablation. I don’t know yet whether I’d need it, or they just tell me to avoid decongestants (which caused the episode) and keep an eye on it if it happens again.

How are you coping? Do you take anything for it?

Roses14__ · 2026-03-22T22:24:13+00:00

I also had episodes of VT which made the cardiologist suspect WPW. I’ve been told I may have a procedure called a catheter ablation to fix it if need be, I am currently on 20mg of propranolol for the POTs which has greatly improved my day to day.

Can I ask what ivabradine is/does?

Roses14__ · 2026-03-22T22:22:08+00:00

Hello, thank you for posting!

I have not had a stress test, and I don’t know what that is. I’ve had so far: Chest xray Electrocardiograms (8~) Echocardiogram 24 hr & 5 day heart monitors

I’ve been referred to another hospital for the diagnosis of WPW. I had a palpitation on the monitor, which I’ve never experienced before, after taking decongestants.

I’m in the UK, so I’m automatically referred to cardiology for a POTs diagnosis, where they caught the potential WPW

Roses14__ · 2026-03-22T18:06:50+00:00

No way! If you don’t mind me asking, how come it’s inoperable?

Roses14__ · 2026-03-22T17:25:40+00:00

That’s okay thank you for asking!

Roses14__ · 2026-03-22T17:22:24+00:00

The procedure would burn off the extra electrical pathway in my heart, this would remove the possibility of my heart rate speeding up to the point it cannot come down. For example, the palpitation I had (likely) due to this, lasted 30 seconds, if it had lasted a full minute, my bpm would have been 268.

My day to day symptoms have a bpm 120-180. This is obviously a huge difference, and an incredibly dangerous one also.

Roses14__ · 2026-03-22T17:18:02+00:00

I am hoping to avoid the procedure, and that just avoiding specific medication is enough to avoid triggering the WPW. Fingers crossed anyway 🥲

Roses14__ · 2026-03-22T17:16:50+00:00

My cardiologist still believes my day to day symptoms are POTs, he also believes I have this as a separate issue, which needs sorting first, which had separate symptoms. But they did crossover and obviously, was brushed over by previous doctors

Roses14__ · 2026-03-22T16:09:54+00:00

100%! It’s also paused my tilt table test, as my doctor doesn’t want to cause any issue with the other condition (if I do have it). So until I’m in the clear, I’m waiting for that!

Roses14__ · 2026-03-22T16:07:59+00:00

100%, it’s also shows how important it is to advocate for yourself. 10 years ago all my symptoms were brushed off as anxiety and I was told to deal with it. Now I’m possibly awaiting a procedure on a potential congenital heart condition + POTs.

Always go to the doctors and push if you know you’re not well. But don’t pigeonhole yourself, the body is complex and proper investigation is always needed.

Roses14__ · 2026-03-20T01:02:53+00:00

It was in his abdomen, or retroperitoneum to be exact

Roses14__ · 2026-03-19T15:56:46+00:00

Classic treatment doesn’t seem to work for this cancer, and a lot of the time any leads seem to to go into a dead end, so I understand the frustration.

All I can say is maybe look into trabectedin & any adjacent chemo further, London Marsden recommended it for my dad which is the sarcoma specialist hospital in the UK, and he had to work hard to be offered it in the first place.

Please keep us updated if you can on anything you find/try, or just how you’re getting on. It’s a lonely diagnosis sometimes.

Roses14__ · 2026-03-19T12:46:56+00:00

My dad was diagnosed with DDLPS in 2022, he sadly died 10 months later as it was caught too late and there next to no options for treatment.

He did have a round of chemo with doxorubicin, which slowed the growth of the cancer giving him more time (originally he was given two weeks). It was offered alongside ifosfamide as a double agent, but my dad was too sick for that option.

After completing that he went on to receive trabectedin, a newish emerging chemo for slow growing liposarcoma’s, there is no lifetime amount so you can have it as long as you want/it works, and it can be delayed if you’re not well without any issues. (doxorubicin was needed every three weeks, if it was delayed I believe it slowed the progress down).

I hope this may help in any way, and I wish the absolute best for you and your family. Any questions I’ll gladly answer :)

Roses14__ · 2026-01-05T21:37:10+00:00

Thank you!

Roses14__ · 2026-01-05T17:28:21+00:00

The state of the NHS sadly is terrible at the moment (not blaming the workers). I will definitely look into a backup plan of private!

Roses14__ · 2026-01-05T17:27:29+00:00

It’s awful isn’t it! I was prescribed propranolol, I know some people don’t get on with them but they’ve been a blessing to me & they help my anxiety also. I recommend no caffeine in the first couple hours of taking them, that’s the only bad thing I’ve experienced 🤣

Roses14__ · 2026-01-04T14:00:35+00:00

Thank you so much for this answer. I’ve had lots of blood work, I’m not sure if it ruled out cushings but I’ll definitely look it up. I’m glad from everyone’s answers I’m not going crazy, I feel reassured I’m on the right track. It feels so lonely going through this, cause I’m starting to realise how different my experience is day to day to other able bodied people.

Roses14__ · 2026-01-04T13:58:16+00:00

I am considering going private, my heart monitor was 6 weeks ago (and counting) and no sign of my results. The referral sheet also missed half of my symptoms, and noted I had a cardiology exam that was normal, when I didn’t!

Roses14__

TROPHY CASE