(Part 2) Top products from r/POTS

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.

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.

That I don’t know. Great question for your doctor, maybe along with testing for other electrolytes. Otherwise you’ll have to use your own judgment on what seems helpful.

If you do increase your sodium, it may be prudent to match it with potassium. You lose potassium when your body flushes out the sodium, and many people don’t get enough to begin with.

I haven’t decided on a recipe yet, but I’m making a new electrolyte mix. Probably with potassium chloride and sodium bicarbonate. Bicarbonate is an electrolyte as well (our bodies can produce it). At the right ratio I can get around 1:1:1 sodium, potassium, and chloride. Plus bonus bicarbonate. I might pair it with a magnesium drink as well, or buy the ingredients and add them to my mix. I salt my food heavily, so my electrolyte mix is mostly to fill in gaps and avoid imbalances. I’ll probably take 7-10g of the mix daily to start, which will only be a couple grams of sodium.

Hopefully that helps? I’m still learning about electrolytes.

Speaking of which, if you are able to invest some $$, I recently bought myself this:

https://www.amazon.com/Stamina-15-9003-Deluxe-Conversion-Recumbent/dp/B000TK4GYW/ref=sr_1_2?ie=UTF8&qid=1472949345&sr=8-2&keywords=recumbent+rowing+machine

Cost me a month's rent, and I am extremely, extremely low on cash, but I was housebound and desperate not to get any worse than I already am. I have not regretted the purchase. If I run out of cash next month and get evicted, I still won't regret it, and you better believe that this thing is coming with me.

What's great about rowing is that it is a full body cardio workout. Then, this machine also has just-arms or just-legs options, which is great for when my other symptoms take one set of limbs out of the running. Plus, being so low to the ground and recumbent, I don't have to worry about injuring myself if I get woozy. It also has built-in HR.

There are significantly cheaper rowers out there, so definitely take a look even if $600 is too much, but avoid anything less than like $300. There is a steep dropoff in quality after that point. The cheap ones use a different mechanism for the band and so are wont to leak oil everywhere, and have something of an elastic recoil vs the smooth resistance of the magnetic dynamo used in more expensive models. Still, rowing machines are unmatched in terms of bang for the buck among exercise machines, especially considered how low-impact they are. If you can sit upright and bend your joints, you can use one - though, the recumbent one above does not even need that much ability to use!

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!

Try these: Heat Factory Merino Wool Socks with Toe Heat Warmer Pockets, Medium https://www.amazon.com/dp/B000LZCM46/ref=cm_sw_r_cp_api_i_.UAxCbVMKZPQ9

They are socks with a little pocket for those single-use hand warmers. The same factory makes gloves as well.

Jobst Ultrasheer has compression at the waist.

They are quite different than the Jobst Relief and Jobst Opaque in the waist.

Sigvaris is on Amazon

The Eversheer/Sheer - 780; Sigvaris Comfort 860; Soft Opaque 840 all have compression briefs / waists.

Pharmacies and large superstores like Walmart will have them. Here is an Amazon link: https://www.amazon.com/Omron-Pressure-Monitor-Reading-Memory/dp/B004D9P1A8/ref=zg_bs_3777151_3?_encoding=UTF8&psc=1&refRID=9E693YYA44R7DS4D2TFQ

I really like this book so far!
https://www.amazon.com/POTS-Together-Stand-Riding-Dysautonomia/dp/1466371501

We haven’t tried anything out yet but here ya go:


Elegear Twin Size Cooling Blanket... https://www.amazon.com/dp/B07SYYLW3N?ref=ppx_pop_mob_ap_share

NatraCure Cold Therapy Socks -... https://www.amazon.com/dp/B003L4WONS?ref=ppx_pop_mob_ap_share

oaskys Twin XL Mattress Pad Cover... https://www.amazon.com/dp/B0756VY8NY?ref=ppx_pop_mob_ap_share

You could try this.

Such as this:
Exerciser 2265 Aerobic Pedal for Arms & Legs https://www.amazon.co.uk/dp/B0002DMK80/ref=cm_sw_r_cp_api_i_D5o1DbF883KKF

These are my favorite ones. However they are extremely firm compression so the first ones are a bit hard to put on but worth it imo. Some people say you need ones that go at least to your thigh but personally I find they work about the same, if not the socks better than the hose. I used to have very severe POTS and these helped a ton. However do NOT ever sleep in them, it’s unsafe.

Compression Socks 30-40mmHg (1... https://www.amazon.com/dp/B01CYI94ES?ref=ppx_pop_mob_ap_share

ITA-MED Microfiber Knee Highs -... https://www.amazon.com/dp/B001D06BZE?ref=ppx_pop_mob_ap_share