u/Ducttapeurmouth

My recent tilt table test ended early when my blood pressure dropped to 58/44. I was on day 2 of my period and had significant anxiety going into the test, so my baseline heart rate was already elevated. When they tilted me, my heart rate only increased by 29 bpm before my blood pressure crashed. One of the 4 nurses that rushed into the room as I crashed told me before they let me leave that my period wouldn’t actually do anything to the results and I beg to differ. Estrogen drops and blood loss… seems pretty important for a bp drop in my opinion.

I believe the timing created a misleading result. On a typical day outside of my period, I have clear orthostatic tachycardia. Lying down my heart rate is usually 70 to 75 bpm, but it jumps to around 130 bpm when I stand. Even sitting at my desk, it regularly climbs above 100 bpm when previously I was a 65-70 (before 2024 when all this started happening to me - first episode was Feb 13th 2024 and I had covid and the flu type a at the same time… out of nowhere hr shot up to 175 and stayed. ED said it was just anxiety). I went to the ED 25+ times that year and some would say anxiety. Some said SVT. Some said PSVT. Some said POTS. And recently it’s been IST and dysautonomia. I just ughhhhhhhhhh.

In the past few weeks, I have also had several episodes of sudden tachycardia while lying down and trying to rest. My heart rate has spiked to 150 to 158 bpm out of nowhere. One episode led to an ED visit where they recommended restarting beta blockers, which I had been off for over a year. Last night and again this afternoon, the same thing happened. I managed it by cooling down with my head in the freezer and an ice pack, lying on the kitchen floor with my legs elevated, and focused breathing. It took 2 to 4 hours for my heart rate to come down to 80 to 100 bpm. The anxiety and symptoms were so intense that I did not fall asleep until 6 a.m.

My doctor recently prescribed three new medications, and I am very anxious about starting them, especially all at once. I am concerned I may not need all of them and would like more data before beginning:

Ivabradine 2.5 mg by mouth twice daily with food. I am most open to trying this one for heart rate control, but the pharmacy only had a few pills and the rest will not arrive for several days.
Fludrocortisone 0.2 mg once daily.
Midodrine 2.5 mg three times daily, with the last dose no later than 6 p.m. This one worries me the most because of the risk of high blood pressure when lying down. I am afraid of becoming symptomatic, needing to lie down, and then having a dangerous BP spike.

I would feel much more comfortable moving forward if they could just do an echocardiogram and arrange 24 hour or longer ambulatory blood pressure monitoring to better understand my BP patterns, especially any drops or spikes.

I was also recommended The Dysautonomia Project Second Edition and to look into the Rezzimax vagus nerve stimulator by my doctor… Unfortunately I cannot afford either right now, so I am trying to wing it with the information I already have.

I am really frustrated and scared about starting new blood pressure and heart rate medications after how difficult it was for me to adjust to beta blockers previously. I do not want to take something I might not actually need, but I also want to feel better and more stable.

Sincerely,
Sad, scared and frustrated.

✌🏻♥️🌮

I lasted a glorious five whole minutes on the rise part of tilt table test before my blood pressure decided to nope out completely. 58/44, with my heart rate doing its best to beat my supine baseline by 29 bpm. The tech looked at the numbers and went, “Eh, not quite 30, so it’s not POTS.”

I’m already a certified low blood pressure girly. My baseline is a cozy 90/60. So when I was laying there and it was bouncing between 88/48 and 99/59 like it couldn’t decide if it wanted to exist, I already knew something was off. Then they slowly tilted me up and my body went “bet” and immediately started the tingly pre pass out party. By minute five, four people came sprinting in like I was the main event at a medical rodeo and I was halfway to lights out.

I vaguely remember whispering , “I feel really weird and I’m scared,” while staring at my heart rate hitting a casual 158 bpm as my BP took a nosedive. It didn’t fix itself right away, so they were about two seconds from hitting me with the rescue drugs before it finally decided to behave… mostly. They celebrated this victory by handing me a cherry Gatorade and telling me not to take beta blockers. The same ones I’ve been telling my doctors for three years make me feel like absolute garbage, but hey, gotta control those random “your heart is trying to escape” episodes.

Now here I am, still undiagnosed, because of course the dramatic daily nonsense I deal with decided not to show up for its big audition at the hospital. I was also anxious, so my resting heart rate started in the 90s instead of my usual chill 68 to 75.

Since I’ve been home, my watch (TachyMon app), my finger pulse ox, and my blood pressure cuff have all been screaming “over 30 bpm increase” every single time I go from laying to standing like it’s their full time job.

Big ol’ defeated sigh. 😞

Also, just to add: I’d been off beta blockers for a whole year like a champ until three weeks ago when my heart decided to throw an all-day rave in the ER. It bounced between 130 and 158 bpm for a solid seven hours. By hour seven it finally calmed down to 103-110, and they looked at me like, “Cool, you’re good now. Go home and start taking your beta blockers again.”

You know, the same ones I’ve been telling every doctor for three years make me feel like absolute garbage. But sure, let’s restart those bad boys because clearly my heart just needed a seven-hour cardio session to remind everyone who’s boss.

✌🏻♥️🌮