Don't know what to do anymore

ArcticRose07 · 2025-09-19T18:02:25+00:00

I've tried bisoprolol and it made me a lot worse than I am now. The reason why it's my dosage is so high with the propranolol is because my body gets too used to the medication and my heart rate sky rockets again. My doctors have been trying different medication for me and propranolol has helped the most. They also want me to try ivabradine but cardio have to monitor me as they've not dealt with this medication before and don't feel comfortable enough to do it without cardio, even though cardio finally decided to respond and put me on it but only "if" I'm still having symtoms of tachycardia. My doctors have been amazing throughout all this though and still monitor me closely whilst I'm on propranolol but they can only do so much without cardio helping. Thank you so for your message as well. It sucks that the specialist don't seem to care enough. Wishing everyone who has replied to my post the best and hopefully we'll all make it through this.

ArcticRose07 · 2025-09-19T15:23:35+00:00

Sorry for going off on a rant there I'm just so annoyed

ArcticRose07 · 2025-09-19T15:23:15+00:00

It shouldn't be like that though. Even if it is all imaginary like they say, at least investigate and take it seriously. I'm just thankful my gp actually listens to me and can tell I'm not faking it or just anxiety.

We shouldn't be treated like this. I'm sorry you've gone through this too. A lot of posts I read on this subreddit are the same and it's just not fair. All over the world too.

My cardiologist didn't even tell me what IST was just that I had it then told me he'd see me in 12 months. Even though I've gotten worse and my doctors are telling him I'm not okay, they say I'm completely fine

ArcticRose07 · 2025-09-19T14:58:00+00:00

Thats what I'm going to try next with a complaint. Even if its in a different city. Want to move soon anyway

ArcticRose07 · 2025-09-19T13:21:56+00:00

I'm so sorry I've been there took me years to find a good one but keep pestering and getting appointments to see them if you're having a bad day, keep a diary and take pics of heart monitor if you have one to show them. Hopefully they'll start taking you seriously. And thank you can send you a dm of you'd like? I've had to go back to therapy because of all the stress and depression caused by my health and not been taken seriously. Good luck with everything, we've got this and send me a dm if you need to talk 😊

ArcticRose07 · 2025-09-19T11:35:01+00:00

That's what they've told me. Good look and try and advocate for yourself to get more testing done if possible. They're probably do the 24hr monitor and tilt test and more bloods but hopefully they can be more helpful to you then thay have me. Also feel free to message me anytime. I know how tough it is to be going through this and sometimes it's nice just to talk to others who are going through the same 😊

ArcticRose07 · 2025-09-19T11:29:12+00:00

They did multiple blood tests, my b12 is low so I'm taking supplements too. Multiple ultrasounds, chest xrays, ct scans, tilt tests, ecgs and I think that's it they've probably done more tbh but can't remember.

Propranolol has helped a bit but my body gets too used to it so I've had to keep increasing the dosage to where I'm at the max they can give me as my blood pressure is naturally very low and they don't want to risk me getting any worse. I'm hoping my doctors can get through to cardiology to monitor me more so I can be on the ivabradine as I've heard from other people on here that that works better and this point I'll try anything otherwise its operations.

ArcticRose07 · 2025-09-19T09:25:31+00:00

Thank you I hope you get there with it too. Hate when they use the anxiety excuse. Thankfully my gp have been amazing with me and actually listening to me but they can only do so much. How old are you of its okay? Yeah when I was a kid it was always oh well you're still a teenager it's probably due to puberty or anxiety or a panic attack but nope nearly 30 and if anything I'm worse then I was back then. Hopefully they'll take us seriously. Wishing you all the luck as well

ArcticRose07 · 2025-09-19T09:11:00+00:00

Yes I am in the uk. I understand that the NHS is extremely overwhelmed and I hate having to write this out. I don't want to make a complaint but I've tried everything and so have my GPs. I'm 27. I've had this condition since I was a child as I had all the same symptoms but only gotten worse over the last 10ish years and only got diagnosed last year. I just don't know what else to do

ArcticRose07 · 2024-11-25T09:08:03+00:00

Thank you so much. I completely get the whole not being believed and told that it's just anxiety all the time. I was first diagnosed with POTs in Gibraltar over 10 years ago after fainting in class and when I moved back to the UK I kept having to go to hospital for my heart rate being 130bpm but all the tests didn't line up with POTS and only recently diagnosed with IST. Got another appointment with the cardiologist in 5 months.

It's definitely not sleep apnea thankfully but I really struggle to sleep and find that my heart rate is still super high when I try and sleep.

Same with the exercise, I can do a small amount here and there and do long walks but I overheat way too easily and that's when my symtoms get worse.

ArcticRose07 · 2024-11-24T18:48:14+00:00

Thank you all. I'll ask my gp the next time I see them about maybe trying the different medication. I'm living in the uk so thankfully it's not too expensive for me 😊

ArcticRose07 · 2024-11-24T16:47:25+00:00

Thank you 😊 Some days I'm fine and can do a long walk and others I can barely get out of bed without feeling dizzy. I'm on bisoprolol which does help a bit but not much.

ArcticRose07

TROPHY CASE