(Part 3) Top 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.

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!

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.

Hi! These are the capsules I use! I buy Himalayan sea salt from ShopRite, since it is healthier than regular salt and full of minerals, and I pour it into a bowl. I then open up the capsules and just fill them with salt! How many I need per day depends on how much I am doing - or how much heat I am exposed to - but they are extremely helpful on the go. I bring them around in a little container in my purse. I also do the same thing with sodium ascorbate vitamin C - which is a natural mast cell stabilizer! Also - if any of you are struggling with anxiety from POTS, or low energy, I honestly cannot recommend magnesium malate enough. Please check with your doctor and titrate up slowly because magnesium can lower blood pressure, but this article explains how low blood pressure can actually be a result of a long-standing magnesium deficiency. I highly encourage you all to check out magnesium. It has been shown to have interaction with the benzodiazepine receptor. I also have found pharma gaba to be very helpful in a pinch for anxiety - but take caution as this one can really lower blood pressure. TINY amounts can be extremely helpful in anxiety-provoking situations. If any of you have anymore questions, please feel free to send me a message. I have done extensive research on all of this! :)

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!

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.

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

Taking one of these salt packets each morning has really helped me. Gives me a lot more energy. https://smile.amazon.com/TRIORAL-Rehydration-Organization-Electrolyte-Replacement/dp/B00OG8G9U2/ref=sr_1_3_a_it?ie=UTF8&qid=1524527783&sr=8-3&keywords=trioral+rehydration+salts

Meditation/yoga/stretching seems to help me a lot with random chronic pain.

I put a capful of Lyte Balance electrolyte concentrate in my coffee everyday. It has really helped me. You can buy it on Amazon: https://www.amazon.com/gp/aw/d/B009I4H25U/ref=mp_s_a_1_2_a_it?ie=UTF8&qid=1540297946&sr=8-2-spons&keywords=lyte+balance+electrolyte+concentrate&psc=1

You could try this.

I had awful silent reflux (diagnosed by an ENT with a camera down my throat) due to POTS. The more I got my POTS symptoms under control, the better the reflux got. These antacids really helped me. Reducing my sugar and carb intake helped. Giving up coffee (unfortunately) helped. Exercise also helped, though it was quite difficult at times.

These small changes helped deal with the reflux, but really, getting appropriate treatment for the POTS is what made a big difference.

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