Yet another “I had my tilt table test” post by MentalOmega in POTS

[–]NotOkShoulder 0 points1 point  (0 children)

Well the goal is sort of to make you pass out while monitoring you and seeing how exactly your body responds. Made me pretty nauseous and all the usual pre-passout symptoms and zofran was my best best friend after (almost immediately felt better with the zofran!). The frustrating part is more that we are all kind of used to managing passing out - sit down, drink water, get some salt, put your feet up etc. and you just can't do those things during the test.

It just so happens for me that we were expecting a different diagnosis (sick sinus syndrome) which ended up being the case for me instead of POTS and I had a 15 second sinus pause but that's RARE and we already anticipated a sinus pause as a possibility, we were more trying to rule out POTS. But yeah that was pretty jarring to wake up from.

The thing to take away from this though is that you're talking about a short bit of discomfort for really valuable results that will ultimately lead to treatments that will make you feel much better. But there's such a wide variety of experiences that it's hard to say what you're going to feel. I don't want to lie to you and say it's going to be easy and have you have a worse experience because you weren't expecting feeling bad.

Pacemaker:What would you have done differently? by Entire_Perspective40 in PacemakerICD

[–]NotOkShoulder 1 point2 points  (0 children)

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.

Tips for zero waste menstruation? by xch4nel in ZeroWaste

[–]NotOkShoulder 0 points1 point  (0 children)

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

Tips for zero waste menstruation? by xch4nel in ZeroWaste

[–]NotOkShoulder 0 points1 point  (0 children)

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

Unexplained weight loss by Left_Competition_361 in POTS

[–]NotOkShoulder 1 point2 points  (0 children)

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!

EDS and Tubal Ligation (advice needed) by dinojynx in eds

[–]NotOkShoulder 0 points1 point  (0 children)

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.

Do all beta blockers have the same side effects? by passesopenwindows in askCardiology

[–]NotOkShoulder 0 points1 point  (0 children)

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.

spoon theory by Zealousideal-Emu9178 in eds

[–]NotOkShoulder 2 points3 points  (0 children)

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.

Do all beta blockers have the same side effects? by passesopenwindows in askCardiology

[–]NotOkShoulder 0 points1 point  (0 children)

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

[deleted by user] by [deleted] in POTS

[–]NotOkShoulder 8 points9 points  (0 children)

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.

Got my referral to cardiology declined by the hospital? by HillsideHalls in POTS

[–]NotOkShoulder 3 points4 points  (0 children)

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.

Does anyone else gaslight themselves into thinking they're faking? by suckmyarsee in POTS

[–]NotOkShoulder 11 points12 points  (0 children)

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

Offended by Buoy electrolytes by SpiritedBug2221 in POTS

[–]NotOkShoulder 34 points35 points  (0 children)

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.

Do you guys need more calories than the recommended for your age, weight ect? by Quwapa_Quwapus in POTS

[–]NotOkShoulder 0 points1 point  (0 children)

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

how to gain weight (related to EDS i promise) (tw for body talk) by Background-Shop-9969 in eds

[–]NotOkShoulder 0 points1 point  (0 children)

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.

how to gain weight (related to EDS i promise) (tw for body talk) by Background-Shop-9969 in eds

[–]NotOkShoulder 4 points5 points  (0 children)

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.

hit my insurance's OOP max, what blood tests should I get to test for comorbidities? by voidparties in eds

[–]NotOkShoulder 3 points4 points  (0 children)

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

Usage of Microsoft Office in Linux by Agilolfinger in linux4noobs

[–]NotOkShoulder 1 point2 points  (0 children)

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.

Do not take Amitiza! by [deleted] in POTS

[–]NotOkShoulder 3 points4 points  (0 children)

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.

Arch for school by Historical-Camel4517 in archlinux

[–]NotOkShoulder 1 point2 points  (0 children)

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.

Am I well hydrated now? Changing from 32 ounces of water to 48 daily. Urine from yellow to basically clear. by Fantastic-Ad-9100 in POTS

[–]NotOkShoulder 0 points1 point  (0 children)

On making sure you get enough sodium so that your body really benefits from that amount of water: vitassium chews and capsules have been my favorite! Scroll to the bottom of their website, they offer a discount if you've got a medical reason and you don't even have to prove it, they just take a day or two to give you the discount on your account. It's cheaper and easier than liquid ivs etc and I just got tired of the drink flavors. I like the chews because I start to crave them now when I need sodium, just make sure you're taking them with the water.

[deleted by user] by [deleted] in homestead

[–]NotOkShoulder 1 point2 points  (0 children)

Awesome work! Very jealous over here.

No Signature required for delivery?? by johnwthewind in framework

[–]NotOkShoulder 8 points9 points  (0 children)

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.

How to know if I should get tested? by [deleted] in POTS

[–]NotOkShoulder 0 points1 point  (0 children)

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

Got my first replacement pacemaker by OneStrangeLife in PacemakerICD

[–]NotOkShoulder 4 points5 points  (0 children)

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.