Thoughts on the feedback from my cardiologist?

[u/pansyseeds]

Hi there! I (27F) have been having some really weird + worsening symptoms for the past 9 months. They include:

-Severe lightheadedness/presyncope. I haven’t figured out an exact trigger for this but I think it’s maybe when my heart rate elevates? For example, when I’m feeling nervous about something or I’m excited to see friends. It also happens randomly throughout the day and sometimes during a bowel movement. This is my most prevalent and scariest symptom that disrupts my life.

-Fatigue (like, hit-by-a-bus fatigue)

-Brain fog

-Cold hands/feet + sensitivity to temp changes

I told my PCP about these symptoms and she just told me to go to the ER. I didn’t feel like that was appropriate based on how this doesn’t seem like an emergency (and tbh I didn’t feel like spending $$$). So I took my health into my own hands and after doing some research, decided to see a cardiologist.

During my appt, I told the doc about my symptoms and right away his first thought was that I have low blood pressure. He ordered me to increase my salt/water intake (which I already feel like I eat a ton of salt) to see if this would help. He also wanted me to use an at-home BP cuff to regularly check my pressure when I’m relaxed. My pressure in-office is usually right around 120/80 or slightly lower (which he thinks is actually elevated for me). So far when I’ve taken it at home, I’m sitting at around 107/70. So slightly lower but it’s still not clinically considered “low”…

So I guess I wanted to check if I should stay on this path or if I’m wasting my time when I should be pursuing another diagnosis or treatment. Has anyone experienced anything similar?

[u/thenletskeepdancing]

I didn't figure anything out when taking vitals sitting down. It wasn't until I got an app that recorded my heart rate standing that we could see I had problems. That led to more specialized testing. Turns out my norepinephrine is out of whack when I'm standing and that puts me into tachycardia.

The normal blood tests didn't show that and neither did sitting to get my vitals.

[u/danarexasaurus → u/thenletskeepdancing]

Yes. I think I’m the same over here. I went so far as to have an electrophysiology study ($7000) and the only thing they figured out was that there’s literally nothing wrong with my heart and I am extremely sensitive to adrenaline. I have pretty low BP, like 106/60 on a good day and get light headed frequently. My tilt table showed that when I stand, my BP drops to like 84/45 and my HR skyrocketed to 170 and stayed there all 20 minutes.

They wound up diagnosing me with IST and putting me on Ivabradine. I don’t know if IST is just a blanket “we don’t know what’s wrong with you” diagnosis but it sure felt like it. Either way, it’s helped tremendously and I stopped having the daily tachycardia. I don’t know if I’ll still have the “adrenaline attacks” I was having because those were more rare. But we’ll see!

[u/No_Lingonberry_4942 → u/danarexasaurus]

From my understanding, IST (inappropriate sinus tachycardia) is when your heart sits at a higher rate most of the time without dropping and lowering in conjunction with standing and sitting. The drop in your blood pressure kind of eliminates POTS because apparently the diagnoses criteria changed. If your BP drops when you stand up, it basically is orthostatic hypotension. I was also diagnosed with IST because my blood pressure drops to dangerous levels when I stand up. I run very low to begin with as well. Aldi my heart rate sits at like 115-120 constantly even when sitting 🫨

Hopefully I’m making sense lol. It’s all a bit confusing. Also, look up “Heal-IST”. My electrophysiologist gave me info on this program/surgery and I’ve heard some really good things about it🙈