Having to consider either loop monitor or pacemaker for dysautonomia - 37/f

Hi all, never thought this would be a community I'd join! Especially since I'm very active/work out almost every day. I'd love some feedback as I try to think of questions for my follow-up with my electrophysiologist next week. A little about me: I'm a tv production graphic design manager, mom of a disabled toddler, and saxophonist in an indie rock band as well as an indie community marching band.

I only just started seeing a cardiologist this year due to random tachycardia (I normally have bradycardia) and random inappropriate rhythm. I also have a lifelong history of passing out once every few years. In my 37 years, I'd guess I've probably passed out 15-20 times, which has almost always been caused by period cramps/heavy period. And I also "stand up too fast" and gray out/get dizzy to varying degrees multiple times every day. The graying out is worse on days that I don't do cardio or take vyvanse (I have ADHD). I'm also about to be evaluated for hEDS next month.

I had a tilt table test last week; for the first 20 minutes my BP and HR did fluctuate but I didn't pass out, then they gave me nitroglycerine and my heart stopped for 25 seconds. I posted the story last week over in r/dysautonomia, if anyone is interested; my BPs and HRs from that test are listed there. Unfortunately, I still don't have any official info on my diagnosis from the test other than the list of BPs/HRs; I'll get that info next Wednesday. I did already have the dysautonomia diagnosis.

Immediately after the test, the electrophysiologist said my options are the loop heart monitor, which would likely lead to a pacemaker, or I could just go ahead and opt to get the pacemaker. It's been a lot to process, especially waiting to actually have a discussion with him about what happened - I was so out of it after I passed out ^((died)) that I couldn't think of any questions at the time, and it came back to me in bits and pieces over the next few days.

I would say all-in-all, I don't have a poor quality of life like many with dysautonomia. I haven't passed out in over a year (caused by period cramps as usual)... I can always feel it coming on, react accordingly, and haven't collapsed from it since I was 16. It's obviously very annoying getting dizzy when standing up too fast, but I have never passed out from it (though I have had at least one or two times this year when I grayed almost all the way out). I do recognize that just because I haven't passed out and hurt myself doesn't mean I won't. I feel like I'm probably in denial a little bit, and have likely been living in denial due to medical gaslighting my entire life - I truly can't tell how serious this is, (but lol, I went asystole for 25 seconds) but I guess I'll find that out at my follow-up.

A cardiologist nurse practitioner friend of mine very casually said "I'd just go for the pacemaker! Then you'll never pass out again!" So I guess I'm leaning toward pacemaker, but it's just so bizarre to be leaning more toward that than the loop monitor, because that also sounded outrageously extreme to me when the doctor said it (I recognize it's not outrageously extreme, but when you go from thinking they're just gonna say "yep, you have POTS, keep eating more salt," to gravely telling you "we need to put a computer in your body, you just have to choose which one," both options sound SO shocking).

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So my questions for y'all (these are all on my list of questions for my doctor too, but I like going into a medical decision with answers from people have experienced the thing as well):

- If you got your pacemaker for dysautonomia/POTS/syncope, has it improved your life? Does it eliminate dizzy days and standing up too fast?

- Has anyone here with dysautonomia gotten a pacemaker and it didn't help?

- Would it keep my heart rate from varying so much? Like sometimes I'll just be sitting here and my HR goes up to 85 (which feels like my heart is pounding since my resting HR is in the 50s).

- I kind of feel like the issue above might contribute to my being fatigued a lot of the time - does having your heart paced regulate your energy better?

- Does it help with overall circulation? Would Raynauds occur less?

- What have you found are limitations in your life due to having a pacemaker?

- How long would I not be able to pick my son up (35lbs)? He still reaches for me a lot, and I'd hate to miss or cause the end of that.

- Any wind instrumentalists here? How did a pacemaker affect you while playing?

- My aunt told me to ask whether electric vehicles affect a pacemaker? I'm assuming no, but she has Parkinson's and may end up having to get the neurostimulation device implanted and she heard somewhere about interference in EVs and said she thought she heard pacemakers were also affected by them.

- If I already do cardio for 40-50 minutes 5-7 days a week, would my recovery time be quicker? When would I get to at least start walking on the treadmill again?

- And hands-down, the most unreasonable question: if you were me, a person who doesn't pass out often, but does have some annoyingly variable heart rates and gets mild tunnel vision when you stand up, would you get the loop heart monitor or go with a pacemaker?

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If you made it this far, thanks for reading my long post... I'm happy to get answers to any/all/none of these, suggestions on other questions to ask, anecdotes, encouragement, whatever. This is a really weird situation to navigate, and would love some support from others who have been through it. Thank you!!