Best products from r/POTS

I was diagnosed with POTS back in April after randomly waking up in the middle of the night with a heart rate of over 180. A tilt table test a few days later confirmed.

I was put on Atenolol 25 mg (but I only take half so I take 12.5 mg a day). The first few weeks (really months) I HATED it. I was exhausted, my eyes were so tired all the time. I was nauseous, foggy, and just miserable. I finally have gotten used to it, my body has re-regulated itself and I am feeling much better. I definitely still am more tired than I remember being before my diagnosis, but it is worth it since it controls my POTS symptoms so well.

What I found works best for me is waking up around 530/6AM, drinking 20 ounces of water and 400 mg of salt, working out for at least 45 minutes (I was in really good shape at the time of my diagnosis, so I am fortunate that even though working out got harder I can still complete an hour long spin class, etc), drinking a full liter of water and a protein shake after, and then taking atenolol. Taking it after working out lets me get my heart rate up during my workout, which I have found to be really beneficial for my symptoms. By the time it is wearing off I am asleep so I don't really notice. Some days I take a second half if I am having a bad day, and my doctor said that is totally fine. Days I don't workout I feel much worse than when I do. I can say that getting up is hard, really hard. But once I do it is worth it!

Here are the salt tablets I use! They don't have that awful taste that some do! https://www.amazon.com/gp/product/B00OU7YXU2/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

For the first two weeks after my diagnosis I barely got up. I know how you are feeling and I promise it will get better. Having a positive outlook is one of the best things you can do. If atenolol isn't working for you, I would definitely let your doctor know and you can try something else. You will find something that works! Keep your head up. POTS is not easy, and some days I still feel awful and like I just can't do anything. On days like that, I treat myself to bacon with breakfast for the sodium, and then go for a brisk walk. Anything to keep yourself moving!! I am a software developer so I work at a desk all day. I feel MUCH worse during the week than on the weekend because I am not moving as much.

Good luck with everything. Let me know if you need anything. POTS isn't fun, but with the right support you can make changes to your life and enjoy everything that is wonderful!

Yes! This was something I put a lot of thought into when I was really sick.

• /u/mnicoleb1773 already mentioned body wipes, which is an essential for the spoonie life. We're living in the golden age of body wipes and I love it. There are the medical grade ones (like these) and the fancier ones they sell in stores now for, like, "active people on the go", and the deodorant ones just for underarms, or whatever. For vulva-owners, I definitely recommend a wipe designed for that area.
  
  
• After the wipes, a good body powder is sometimes helpful (I love Lush's "silky underwear" to use under arms and the underboob area).
  
  
• For hair, if yours is short enough you can use rinse-free shampoo (some even come in a shower cap form where you just put it on and smoosh it around and throw it out). I usually fared better with dry shampoo and a re-hydrating spray for curly/wavy hair since my ends tend to dry out.
  
  
• And then there's shaving. Get an electric shaver that works dry. I got this basic one for $18, and it's absolutely good enough. I even use it on underarms after getting the area clean and thoroughly dry (a tiny bit of powder rubbed in before is helpful to reduce friction).
  
  
• Another option for shaving is the shave cream by EOS. It can be used dry! And it works as long as your razor is good and sharp and you go a tiny bit slower. (I wiped a damp washcloth on my legs first and that seemed to help) And then follow it with a damp cloth to get the residue. And you can just be sitting on the floor to do this anywhere.
  
  
• When I was feeling ambitious enough to shower, a stool was essential. My shower is tiny, and this one still fit. If you've got a bigger shower stall (or even a tub!) you can find some cuter shower chairs, even.
  
  
• And I would sit to floss. And really just, any time that it was logistically possible.

Lyte Show is a life saver

ultima electrolyte drink mix

The ultima has no added fake sugar, or brominated veg oil or any of that crap and has a lot more minerals than Gatorade/Powerade. I love the raspberry but there's tons of flavors and they also come in individual packets but I prefer the scoop to make pitchers of it.


The lyte show is great to keep in your bag for when you really need help. It's also great for athletes and binge drinkers because of how quickly it replenishes. It does taste like salt water but not as bad as you would
Think. The other option will
Taste better and be easier for you to drink but this is for when you need it quickly...and it really doesn't taste that bad


I swear by both of these.

That sounds awful. Kudos to you for getting through your work days.

For diagnosis, is the doc who gave you the beta blocker working with you to get an official diagnosis?

For the blood pooling, have you tried a footstool? Or for the light flickering, sunglasses? There are pricey ones specifically for fluorescent lights but you might try cheap dollar store ones to see if a certain brand helps. I know the helpfulness of these things varies widely, but if you have an opportunity to try I hope you get at least some small relief.

Are you working on any exercise program? I imagine you are completely wiped out on your off-days, but if you can do even very gentle stretching or leg exercises while lying down on a regular basis it can add up to a big difference over weeks or months.

The shakiness and the dazed-vision are pretty common in POTS. They are not risk factors for anything (no seizures!) and so apparently aren't interesting enough to study. They are definitely scary and debilitating and I am sorry you are experiencing them so regularly.

I hope you have some positive things happen to you today!

Thanks so much for your reply! Great stuff in your comment. We've talked a lot about days where she doesn't have the energy and days she does. Still a struggle, but not an issue (if that makes sense). I'm pretty high energy, so often need to adjust. We're great on communication, and actually tend to balance each other out.

She uses dry shampoo a lot, never realized that was a POTS thing! I'll try to keep a can at my house; she's pretty picky on her brands.

I guess I'd never thought about the loneliness aspect; that must be really tough. I'll talk to her about her feelings with that.

Going along with that and the shower stool... She has a shower stool at her house currently. A clunky, medical-'for-the-elderly'-looking one. She hasn't said this directly, but I imagine she hates it.

She's mid-twenties, has a lot of spunk, and a ton of style. Obviously her shower stool doesn't fit her style at all. I kinda wonder if it's a weird reminder. Like an eyesore that reminds her that she's only 26 but needs a shower-stool.

I may be totally wrong about her feelings, it's just something I think about. Wanted to get your opinion on this. It's totally her style, and I want to surprise her with it. Is this something you'd use? Or do you think would cover your needs of what you need a shower stool for? It's a bit expensive, so want to ensure I'm on the right page. If so, I think she'd love it. May make a post about it to get the communities opinion.

Sorry for the ramble; thanks for your help!

There's a TL;DR at the bottom for convenience lol.

It sounds more complicated than it really is. Basically I looked up low histamine diets on the various MCAD/POTS groups I was in on Facebook, and they had a few documents about some things there to start with. It was either Christmas or my birthday (I forget which one) and my parents got me these books (book one, book two). There's another book or two around here somewhere but I can't find it at the moment to get the info.

They got me the printed form, but these books seemed like they were printed as an afterthought, and were meant to be an ebook instead (price confirms theory). Low histamine is a pain to stick with, especially if some of the staple items that they suggest to eat cause issues for you (like me), but me and my girlfriend went through the various plans and basically picked out meals from each of those books and a couple other meal plans we found online. She was previously a strict vegan for a handful of years so she has recipes for that we incorporate into our meal plan with twists on the ingredients as needed.

We make sure to try and purchase as healthy as possible ingredients, least processed stuff, less dyes, less artificial sugars, etc. I stay away from dairy with exception of eggs. They have to be either hard boiled or fully cooked scrambled - ie pretty much the dry chalky charred point or they'll give me a histamine fit that will turn into a IBS-D fit with me running straight to the bathroom. Essentially we just kind of tried different things to see what we all liked, and what was easiest/cheapest to make out of the plans, and then kinda went from there.

TL;DR: What I'd recommend is to educate yourself on the major histamine trigger foods and eliminate them or at least educate yourself on histamine foods in general. This book goes over a lot of the bigger ones if you want a quick read to get up to speed. Then create a food journal because with MCAD we are all so vastly different it's hard to really give detailed diet plans to one another. We all have to kind of start somewhere and see what works for our own selves.

You should get knee-high/thigh-high compressions! I wear shorts with mine at home. I prefer the ones that stop at my ankles ("footless") because my house has slippery floors. I highly recommend the thigh highs, but they can bunch up under the knees and become uncomfortable (I sit on my legs or squeeze myself into my chair tho). They also have silicon circles at the top to hold onto your legs better, but I fold them outwards because they leave dents in me and make me itch, they also aren't really needed since they hold on pretty good anyway, otherwise I love them.

thigh-high w/o foot = https://www.amazon.com/gp/product/B07L8XTN7L/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&th=1

thigh-high w foot = https://www.amazon.com/gp/product/B072TLJ9TP/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&th=1

You might also consider a no-rinse shampoo cap, found here No Rinse Shampoo Cap (5-Pack) https://www.amazon.com/dp/B009I12STI/ref=cm_sw_r_cp_api_KQ.TBbVSAGTCM

A shower chair (or just a cheap plastic stool) is a must.

Long term, if you can gradually increase your activity, it will help almost every aspect of POTS. Just start wherever you are, and do a bit more of it. Can you just barely walk to the kitchen and back to bed? Try to do that twice today. Maybe in a week do it four times, etc. I started barely being able to walk around the house, and just did a tiny bit more each day. I can now walk a couple miles every day, and my POTS symptoms are substantially better, including my ability to be in the shower.

Good luck to you! I hope you find something that helps.

EVERYone is different... it depends on your weight, severity of POTS etc. I'll use myself as an example- I have two 2-3 normalyte packets in water a day (https://www.amazon.com/NormaLyte-Rehydration-Salts-Yields-500mL/dp/B01IE8PMDE), I LOVE salt so I add a ton to almost every meal, and on days when I need extra support I'll take a few to several salt sticks. My POTS is mild-moderate, and I am light weight.

I just ordered their Vitassium product, which is higher in sodium and a smaller pill, so taking several of those daily along with my usual regimen should be a good amount for me. Also happy cake day!

To help you cook the soup (because I know it can be tough to watch and stir and then clean the pan) I just bought this little electric pot:
https://www.amazon.com/gp/product/B015S8B48K/ref=oh_aui_detailpage_o00_s04?ie=UTF8&psc=1

It's big enough for one, maybe two ramen packages, or a full can of progresso soup. I just used it today for the first time and it's SO easy! The outside stays cool (well, warm) so you can eat right out of it. Just rinse it out and give it a quick wipe, all good! Boils within a few minutes and can be used for a lot of different things (hot water, boiling eggs, oatmeal, pasta). My daughter can make her own soup now without getting off the couch.

Consider a little plastic stepstool like this one:

https://www.amazon.com/PRIMO-Freedom-Step-Stool-White/dp/B000P26I0E/

It is small and light enough to carry around and stow, and will dry quickly after a good shake. You'll be seated low to the ground, but it's better than nothing, and certainly better than the floor!

Also reach out to your adviser to get you in touch with the department in your school that handles ADA stuff. There may be specialized facilities, or ways that they can relax certain rules, to make it so that you don't have to drop school just yet. Heck, what would they do if a kid was confined to a wheelchair? They would need to have options. There's no reason that you can't be given the same options if your condition requires them.

Mine was very sudden as well. Ended up being able to pinpoint it to a virus (hand, foot, and mouth) that caused pericarditis (inflammation of the lining of my heart). I didn't feel sick at all, but started having chest pains, increased heart rate, and passing out. First 3 ER visits all said I was having panic attacks.

From being in a similar situation, I know that the change can be rough. I went from working out 1-2 times a day, playing all day volleyball tournaments, and running half marathons - a year later now sometimes I am too tired to get off the couch, throwing up and passing out after 3 miles, and experience incredible soreness. Sometimes there are good days, some days are not so great.

Btw - found this to be great for hydrating https://www.amazon.com/gp/product/B00EISFBYA/ref=oh_aui_detailpage_o04_s00?ie=UTF8&psc=1