Hi all. So bit of history for you. I woke up in 2012 with tachycardia, which has never gone away.
Over the years I've been diagnosed with pots, IST, hypothyroidism and awaiting a formal diagnosis of HeDS.
I take Ivabradine which keeps my resting heart rate between 100 - 120. Since the pots diagnosis I was referred to specialists in London who have focused on managing symptoms. I was eventually put on midodrine (currently at 7.5mg) which helps. So long as I can avoid standing still and heat I can manage it pretty well.
The IST has never been the focus of appointments for 6 years and yet that is what is causing me 90% of my problems. I never feel rested, fatigued and currently have no quality of life. When I'm well enough I go into work, then come home and lie down. As my heart rate never reduces, even in sleep, I don't feel like I'm ever improving. Every year I just get worse and worse.
Doing my own research and ablation seems the next step for IST, and a possible cure, but for some reason it can make pots permanently worse? I don't understand this and I've only just started bringing up the idea of an ablation with my specialsts. I saw a neurologist today who agrees that after doing another 24 hour monitor I should be talking about an ablation with my cardiologist.
So I'm looking for more information. Why does an ablation of the sinus node worsen pots? And I guess can it make the pots so much worse that it out does the benefits to IST.
I'm desperate to actually receive treatment and am fed up of six years of being told to drink more water and pump my leg muscles.