After combing through this fantastic site I figured it was time to start interacting . I'm almost 28 and was officially diagnosed with IST last summer after years of on-again-off-again symptoms and testing. I now have a wonderful cardiologist who was the first doc to tell me right off the bat that it's not all in my head, caused by anxiety, or my ADD meds like every other doc had told me.
When I was around 13 or 14 I started getting these awful, pounding headaches that increased to several times a week (made worse by standing). I would also feel really weak in the legs and head, especially on standing. It's now second nature to stand up, walk a few steps, then stop and bend at the waist until the tunnel vision goes away. Other symptoms include low bp (~90/60 without meds), resting hr 90-100, inability to regulate my temp (I can go from shaking cold to melting in a snap), palpitations, sob, and terrible sleep.
After getting diagnosed, I was put on propranolol and that's helped my hr but I still get palpitations and side effects of mild to extreme fatigue and really low bp (~65/45). I've upped my salt and water intake which helps some and I prop my feet up at my desk job. My cardiologist tried switching me to Corlanor/Ivabradine but it made me feel so sick and gave me a nasty headache so back to the propranolol it is. I just had my first appointment with an EP this morning and, again, he was wonderful! He agreed with IST diagnosis and is very against ablation for it. He wants me to do a TTT and start playing around with different meds to find one that works better.
The frustrating thing I guess is learning that I really do have limitations (not laziness), how to live with them, and that it's a lifelong condition-symptom management only. I don't have a husband/SO and no kids so aside from parents about 20 min away, I'm on my own which gets a little depressing sometimes (thank God for the internet). Are there any tips anyone can give that have helped keep spirits up? It's kind of a waiting game right now for me and I really don't have much energy at all.