u/BriTheArtist

I notice that when I lay down to sleep at night I get palpitations, restlessness, and anxiety. This has happened in the past when I was on too high of a dose of clonidine and my BP was low, but my vitals are all fine when this happens currently. It doesn’t feel like normal anxiety either. I also have suspected MCAS so I’m not sure if this can be attributed to this too. I also notice this happening more around times when I change any of my meds, even non pots ones.

The past three months (or longer) have been rough for me. I’ve been on fludrocortisone for just over a year and it started giving me issues (weight gain, hypertension, stretch marks, peeing a lot and also thirsty), my cardiologist told me I could go off of it and to try half the dose. Not long after this I was ‘discharged’ from them into my pcps care, turns out my pcp doesn’t know enough about pots to treat me, she sent me to another cardiologist (he was shit).

All while this is happening I try a non-stim adhd med, had a bad response to it and had to call 911, and still am in between cardiologists. I cut the fludro in half, my average/resting BP decreases. Flash forward a month I’m dealing with hypertension constantly again (not just while standing- I have hyperpots btw). Try going off of fludro, made me hella restless, no help from doctors. Decide to cut fludro into quarters (currently on this dosing), still restless but more bearable (this also happened when I’d originally halved the dose too).

I see my pcp again before going down to quarter dose, she almost sends me to the er cuz my BP is super high again. Tries referring me to Cleveland clinic, doesn’t want to touch my pots meds, they tell me they don’t take out of state patients for their pots program. Refers me to another random cardiologist. Then I go down to the quarter dose of fludro, pots symptoms inevitably get worse because the fludro was helping but BP gets better.

I decide to call my old cardiologist today, turns out since I’ve been seen within 3 years I’m not officially discharged and they can get me in (not until October though). I talk to a nurse, and I’m hopefully going to go up on my ivabradine (I’m on the lowest dose, 2.5mg, 2x/day) to help worsening pots symptoms. Goal is to stop the fludro completely because it will inevitably make my BP start to go high again like the past two times.

Now I didn’t really like my old cardiologist to begin with (the one I called today). She pushed me to exercise despite me suspecting I have CFS/ME (though I didn’t outright tell them this, I did however tell them exercising made me worse and they just wanted to send me to pt and wouldn’t listen to me). They also kept me on fludro despite me having hyperpots (I did not know fludro could raise BP at the time). It feels like they’re my only option right now though, and I’m not seeing the actual cardiologist just a PA or NP, but they still push exercising (I’d come to ignore it in the past). However she is knowledgeable when it comes to pots so weighing my options I decided she was my best bet now. I’m both relived I can get into her office yet dreading the appointment all the same. At the very least I can get off of fludro and up ivabradine (hopefully).