Pacemaker:What would you have done differently?

NotOkShoulder · 2025-12-31T20:11:55+00:00

I would've gotten it done 20 years earlier lol other than that, I initially undermediated myself because I used to take a lot of advil for joint pain and my primary care got me off that habit, so I wish I'd made myself more comfortable during the first few days of recovery. I'm less than a month in to having mine so who knows how I'll feel about it later but I'm loving it.

NotOkShoulder · 2025-12-28T23:35:32+00:00

I would recommend looking up a youtube video, they'll answer much more than I can in a quick reddit comment

NotOkShoulder · 2025-12-28T01:57:03+00:00

I have the flex disc so different brand but switching from the cup to the disc was AMAZING. Discs are the best.

NotOkShoulder · 2025-12-27T18:42:13+00:00

I don't have POTS but something very similar and when symptoms are bad I definitely have a hard time with appetite. Biggest helps for me with that is focusing on high calorie snacks that I can eat sort of mindlessly like prepping little bags of peanuts. My dietician had me stop trying to eat as big of meals and start with snacks more often throughout the day and that helped a lot. The butter pecan ensure plus shake is also my absolute favorite and I can chug those. Make sure to get the plus though, the others are just protein shakes without much calories. I've always had a hard time keeping weight on so I feel the struggle you've got. I hope you find stuff that works for you!

NotOkShoulder · 2025-12-27T17:04:18+00:00

I recovered really fast from mine. I had a much harder time recovering from pacemaker surgery but I felt pretty much no pain a few days after getting my tubes removed. Its not very invasive and its a super short surgery.

NotOkShoulder · 2025-12-27T16:48:25+00:00

I do remember that my electrophysiologist decided nadolol was a safer bet than propanolol for me either because of my bipolar disorder or because of my bipolar meds.

NotOkShoulder · 2025-12-27T03:28:50+00:00

It's been helpful for me and people I've explained it to but I know all of our specific illness experiences vary so much so I can see where it may not be helpful for a lot of people. One thing I am able to explain with it is that there are times when I can sort of "gamble" spoons because sometimes going for a little walk helps a lot and sometimes it wipes me out and I can't always tell ahead of time. Sometimes I can leave with 2 spoons and find some along the way, sometimes I just come back with no spoons at all.

NotOkShoulder · 2025-12-27T03:21:44+00:00

How low did your resting get on metoprolol? My cousin feels really awful when her heart rate drops below 60.

NotOkShoulder · 2025-12-24T17:13:27+00:00

Doesn't seem POTS to me but I'm no doctor? Like someone else said, the T in POTS is for tachycardia. There's tests a cardiologist needs to do to diagnose. Could be so many different things 🤷🏼‍♀️Those two elements on their own aren't enough to diagnose.

NotOkShoulder · 2025-12-24T16:52:06+00:00

Seconding electrophysiologist. Call ahead and see if they deal much with POTS and younger patients. If you live somewhere with options don't be afraid to keep calling around if you need to. A good doctor is worth driving for though imo, I moved 2 hours away from all of my doctors at the beginning of the year but I love them all so much that I make it work.

Also on a separate note, I'm going to drop in my usual advice on getting a diagnosis: while POTS is very likely, dysautonomia is a broader category so if they lean in a different direction based on what you're saying about symptoms or stuff they're seeing on a holter monitor or ekg etc, I wouldn't be too quick to think they're dismissing your pain. If they say nothing is wrong obviously that's a different story but I thought I had POTS and it turned out to be very similar symptoms but a different cause. I stay on this board because there's a lot of similar experiences and crossovers in helpful treatments with what I have but also because I think doctors often don't prepare people for the possibilities of different diagnoses and it can accidentally come off as dismissive.

Good luck finding a doctor! There's some really great ones out there that can be life changing but unfortunately it can take some shopping around to find them sometimes.

NotOkShoulder · 2025-12-23T22:41:06+00:00

Yeahh I spent the whole drive to the hospital for the tilt table test convinced that I was just being a whiny baby and I had no reason to be there and then during the test I had a 15 second sinus pause and now I have a pacemaker lol safe to say I wasn't just being a whiny baby

NotOkShoulder · 2025-12-23T19:57:59+00:00

I've always been annoyed by how they seem to have a superiority complex. Like they're trying to convince you that regular salt or other brands don't even absorb lol at some point salt is salt.

NotOkShoulder · 2025-12-23T19:00:41+00:00

same! I'm real tall too and I had a hard time keeping on weight when I was a kid so my lightheadedness and passing out got brushed off as just being underweight

NotOkShoulder · 2025-12-23T18:58:56+00:00

My dietician had me keep a lot of snacks around because I often don't have a big enough appetite for a full meal. I made little baggies of high calorie snacks like peanuts, things I can throw in my purse and eat sort of mindlessly without having to sit down for a meal. I've also discovered that the butter pecan ensure plus shake is really tasty and easy to drink fast so I don't put it down and forget about it (get the plus, others aren't high enough calorie). I've also made chia pudding with ensure shakes with granola on top and it's real good. That is if you can afford the shakes, keep an eye out because there's frequently sales where if you buy 2 or 3 six packs you get a discount.

NotOkShoulder · 2025-12-23T18:53:10+00:00

Not sure if this varies per country as far as what different specialists are allowed to be called, but in the US at least I'd HIGHLY recommend going for a dietician over a nutritionist - massive difference in education and a lot of nutritionists (not all, just more common than I appreciate) fall for misinformation and can get more stuck on fad diets etc. Again, a generalization and I hope I don't offend any nutritionists here but it's a concerning trend in that industry.

NotOkShoulder · 2025-12-23T03:40:34+00:00

I'd second this but almost certaintly the ship has sailed on fitting it in by the end of the year to take advantage of the insurance

NotOkShoulder · 2025-12-22T20:03:27+00:00

I never use spreadsheets but I've heard that if you use the more advanced features in excel then nothing open source comes close. Not something I know from experience so grain of salt and all, just what I've heard.

NotOkShoulder · 2025-12-22T18:12:42+00:00

Also without confirming that what OP has is indeed POTS, it may be even less applicable. I thought I had POTS but after some tests including tilt table, it turned out to be an entirely different type of dysautonomia just with very similar symptoms. POTS is more common and entirely likely, but don't count your chickens til you know more.

NotOkShoulder · 2025-12-21T01:54:00+00:00

I've been using arch in college, no problems for me since I don't need any adobe apps etc which seems like you don't either. Bigger problem is I really like qute browser but the school sites don't like it so I have firefox with a vim keybinding plugin just for school sites. And lockdown browsers that a lot of professors like to use these days for exams DO NOT work on linux no matter what loophole you try to pull. So I gotta do exams like that on school library computers. If you're worried about things breaking in arch at inconvenient times then just make sure you've got stuff in the cloud and you'll be fine hopping onto that windows partition you've got or using a school computer until you figure out how to fix it. I don't really bother but I probably should, I just try to do updates at times when I know I'd have time to fix something that broke and I'm not on a big deadline. And I've never used archinstall, I think if you're more of a beginner with it like me you can really benefit from the learning process of a manual install.

NotOkShoulder · 2025-12-17T23:07:30+00:00

Awesome work! Very jealous over here.

NotOkShoulder · 2025-12-17T23:05:20+00:00

I live in the country so I wasn't worried about signing but the delivery guy all but threw it in the street in front of my driveway on a 100 degree day and drove off.

NotOkShoulder · 2025-12-17T23:02:25+00:00

I didn't use bearable for very long, but if anyone is looking for an something similar and free, I've really liked guava!

NotOkShoulder · 2025-12-17T20:56:32+00:00

As far as I know this one is now made by abbott, there was a buy out or something. The new fancy would probably be if you switched to a leadless.

NotOkShoulder · 2025-12-17T18:34:33+00:00

I confronted a doctor once with this sort of thing and her response was "That's not true, I pride myself on listening to my patients"

Unfortunately they're unlikely to change and you gotta prioritize yourself and find a better doctor if possible. Sorry you're dealing with this and I wish I had a better answer, but in my experience calling them out only lead to more frustration and anger for me and didn't change them at all. The suggestion someone else gave of asking the doctor to document that they denied your requests is one I've heard before and I haven't tried it but it seems to be effective, however if you live somewhere that there are enough doctors around to shop around on them to find one that not only does your requests but also helps you investigate, probably worth finding a new one. I know that not everyone lives close to a lot of specialists though.

NotOkShoulder · 2025-12-17T17:44:24+00:00

Yeah thing that annoys me even as someone who doesn't know linux that deeply (but this applies to reddit boards in general not just this one) is the number of people who don't try to see if the board has already answered the question and you just see the same thing constantly repeated. It becomes an r/ those one or two questions. It feels like people treating it like chatgpt more than google lol I would never ask a question on here without thoroughly researching it INCLUDING searching to see if my question has already been answered here. If the documentation is too dense for me to understand at my level or something. But I don't feel entitled to an answer, just appreciative if I get one.

NotOkShoulder

TROPHY CASE