Best products from r/dysautonomia

I have

• Chill Pal PVA Cooling Towel (Ocean Blue) https://www.amazon.com/dp/B00XKLYWFU/ref=cm_sw_r_cp_api_i_ytOmDbPB9SMQ9this
  
  
• Chill Pal 12 in 1 Multi Style Cooling Band (Purple, Full Size) https://www.amazon.com/dp/B07D52VTW1/ref=cm_sw_r_cp_api_i_3tOmDbM1VCJKT
  
  
• Chill Pal Mesh Cooling Towel (Twilight Purple, 12 x 40 inch) https://www.amazon.com/dp/B06W9NBS28/ref=cm_sw_r_cp_api_i_ivOmDbP4BJATD
  
  They all work really well, but IMO the effects can be short lived and you frequently have to get up and wet them again. The PVA cooling towel seems to work REALLY well, I think it has something to do with the gel like consistency of the fabric. I think these are good things to have around. My heat intolerance is really bad, so every little bit helps.
  
  Also, I have an Embr Wave device, which I find brings short bursts of relief, but it takes a while between sessions and needs to be charged often. They’re also a bit pricey.
  
  Cold showers help a lot. When I’m overheating, even cold water doesn’t make me jump like it normally would, it feels very soothing. It’s just about finding the right temperature.
  
  Keep cool objects against your carotid arteries (basically just keep cold or cool items on your neck).
  
  Fans help. Use a plastic spray bottle filled with water and mist yourself. I’ve tried one of these and I actually find they work really well for me
  
  
• Handheld Misting Mini Fan, 4000 mAh Battery Operated or USB Powered Portable Fan with Cooling Humidifier, 4-15 Hours Battery Life, Water Spray Fan, 3 Setting,Quiet Air Conditioner for Travel and Women https://www.amazon.com/dp/B07Q3QJ4RZ/ref=cm_sw_r_cp_api_i_TzOmDbJ8YDEWW

Thorough info I really appreciate it And as someone who has gotten the most relief/answers from naturopathic / holistic doctors, I really appreciate that you are open minded enough to go to an ND. Can't tell you how much hate ive gotten whenever I write about my experiences with ND's. Yet not one western doctor MD has yet t ask about my diet, and when I asked my primary care UCLA doctor where I can get tested for vitamin deficiencies she said "I have no idea."

I really hope you start feeling better soon. Also, since you are open to trying things that are outside of the box, I recommend looking into this company's products: https://ancestralsupplements.com

I am on a mostly plant based diet myself which has helped, but supplementing with their spleen reversed my years-long mystery anemia. I also take their heart and bone marrow. The owner is incredible and responds almost immediately. Sometimes he even sends out a free bottle for you to try if you explain your situation. He can give good advice on recommendations. These organ supplements have natural bioavailable nutrients more so than any other food on earth. I recommend looking at their amazon reviews which are so inspiring. There are a lot of very chronically ill people getting their life back with the help of these supplements. Wish u the best! https://www.amazon.com/Ancestral-Supplements-Grass-Liver-Desiccated/dp/B01MSBZYQW

EDIT: Check out their kidney supplement which has high amounts of natural DAO (histamine inhibiting enzyme) https://www.amazon.com/Ancestral-Supplements-Kidney-High-Selenium/dp/B078K8L672/ref=sr_1_2_sspa?keywords=beef+kidney&qid=1562023339&s=hpc&sr=1-2-spons&psc=1

Sad thing is, all of this is 100% more than possible with our technology but nobody's invested in making us that comfortable T_T

Real talk tho, the blog Not Done Living has great advice for us bedridden folks!

I've found that having a day bed or recliner plus night bed helps a ton, and keeping a [multi-layer cart](3-Tier Utility Rolling Cart with Large Storage and Metal Wheels for Office,Kitchen,Bedroom,Bathroom,Black 130839 https://www.amazon.com/dp/B07DD9B6WP/ref=cm_sw_r_cp_apa_i_AyFnDbPCXE0QS) next to you to store all the things is very useful.

Make sure the cart is somewhat heavy-- I made the mistake of first getting a very cheap light one, but you can't hang anything from it. For the one I linked above, which I saved up and got eventually, I use a [cloth hanging pocket](Surblue Caddy Hanging Organizer Bedside Storage Bag for Bunk and Hospital Beds, Dorm Rooms Bed Rails(8 Pockets) https://www.amazon.com/dp/B06XWN5CVF/ref=cm_sw_r_cp_apa_i_sAFnDb7CD99XB) to hang my laptop and small things like pens (I just had to cut a small fabric divider in the inside) and some [hanging organizer trays](2Pack Dormitory Bedside Storage Baskets, YIFAN Mesh Origanizer Caddy for Books Phones Drinks Office Home Table Hanging Organizer Desktop Corner Shelves - Black https://www.amazon.com/dp/B0714HTQ9H/ref=cm_sw_r_cp_apa_i_hBFnDbFAR3P8P) for extra storage.

It actually helps a ton to have more stuff in arms reach, and keeps your lap and chair/bed less cluttered. For my bed, I have a cheap metal four poster thing, with bars connecting the posts. Not weight bearing, but good enough to hang a [few things](mDesign Metal Wire Cabinet/Wall Mount Hair Care & Styling Tool Organizer - Bathroom Storage Basket for Hair Dryer, Flat Iron, Curling Wand, Hair Straightener, Brushes - Holds Hot Tools - Bronze https://www.amazon.com/dp/B074JCKXFF/ref=cm_sw_r_cp_apa_i_HCFnDb36WJH90) from bungee cords.

Then just attached a medicine cabinet to the wall by my bed, though honestly they get full so fast. >< I need to get rid of all the old meds I don't use.

So, I use chicken bone broth to get both my liquids and salt content. It really helps me to stay hydrated which is just as important as increasing your salt content. The broth is low-calorie but high in protein. So, it helps me with my weight-loss goals as well. I have found that a lot of other options such as sports drinks, etc. have a great deal of sugar in them which adds a great deal of calories. I drink the broth straight from the carton and don't even bother heating it up because I am a full-time teacher working on average 60 hours per week. Here is a link to the hand-held product I order on Amazon though it is also sold at my local grocery store. Hope this helps. Feel free to let me know if you have any questions.

First, learn a bit about what copy editors' and proofreaders' roles are in the publishing process. Here's a good primer (it's written for authors but gets the point across).

If you think it's work you could be good at, take a copyediting course. Many local community colleges offer them in person and online. Here is an online course from a school near me. The syllabus is a pretty solid introduction, anything similar would work. I can't see a newcomer breaking into this without a class, because the work is more than just spotting typos and checking grammer, there are a lot of subtle details to be aware of.

In addition to, not instead of, a class, The Copyeditor's Handbook and The Subversive Copyeditor are books you need to have on hand, as references but also to get a detailed sense of the work.

Once you have started learning the job, you can try to find work. It's a very insular field--if anyone wants to DM me for some contacts feel free, but knowing who to ask does not equal getting work. Everyone will send you a copyediting test before hiring you, and some are really picky about reviewing your results. But if you do enough networking, and can get a couple of projects under your belt, you can meet more and more people to work for.

Proofreading starts at around $20-25/hour (assuming you can edit ~12-15 pages/hour) and copyediting starts at $25-30/hour (assuming you can edit ~8-10 pages an hour). Rates go up for rush projects or specialized content (legal proofreading, cookbooks, technical copyediting) so if you already have domain knowledge you can apply then look into publishers for those subjects. Note those rates are gross receipt; you're an independent contractor so you still have to pay taxes out of what they pay you.

Hope that helps! Feel free to DM me if you have any questions, it can be tough to break into it but is a great option to have in your pocket if you can.

1. This page, and all its links, is a great place to start for someone who also wants to understand in depth: http://www.dysautonomiainternational.org/page.php?ID=29
   
   
2. I found an amazing brochure by Mayo Clinic (geared at teens, but great for anyone) that explains the basics extremely well, but am now having difficulty finding it again on the internet. I'll try to find it and get back to you.
   
   
3. If you are interested in the scientific details and enjoy reading hardcore science journal articles, start by reading abstracts on PubMed. Message me about papers or topics and I'm happy to pass on what I can!
   
   
4. This book is less science-y, but has loads of relatable tips, stories, information- a very good place to start: http://www.amazon.com/POTS-Together-Stand-Riding-Dysautonomia/dp/1466371501

I have two. I had no idea about their usefulness for dysautonomia, but I bought one of these for an event, and then found I felt better while wearing it and so kept doing it. Apparently, I was unintentionally treating myself, interesting. The two I have are Squeem and Rago. The Rago is cheaper, and honestly I like it best, but it has ribbing, so if you're looking to wear it for long periods of time, you may find the Squeem more comfortable.

I recommend watching this video, at the 9 minute mark there is a graph showing all cause mortality drops rapidly as you approach 4-5 grams sodium, then slowly increases beyond that. So it’s difficult to overdose. Your body should simply excrete the excess sodium.

If you get an electrolyte mix such as NormaLyte it may have 3g of sodium chloride and sodium citrate, but table salt is about 40% sodium. So even that only has ~1.2g sodium. Sports drinks are mostly just sugar water, and don’t really support general health, in my opinion.

Put another way, it would take 12.5g of table salt (over 2 tsp) just to reach the upper end of the ideal range. You could double or triple that and never reach the risk levels caused by low sodium. Salt is safe.

As far as water, I drink around a gallon a day, but there’s a wide range that is probably healthy. If you find pounding water helps your symptoms, it’s fine to drink a lot. If you don’t notice much difference, don’t stress about it too much. I don’t know how scientific it is, but there are water calculators out there.

I figure if I’m on the high end of water consumption, I should be on the high end of electrolytes as well. I made an electrolyte mix based on the Normalyte ratio.. I think it’s in section 2.3 of this doc. I add a few grams of that to my protein shakes, and salt my food aggressively, and I still don’t come near a concerning amount of sodium.

Methods and Resources for Hypermobility/EDS & POTS Management 1.0

Hope that helps.

http://www.dysautonomiainternational.org/page.php?ID=44

Increase Fluid and Salt Intake

"It is often recommended to increase both fluid and salt intake in order to increase blood volume, which is typically low in POTS patients. This has proven to be particularly helpful in patients with blood pooling, hypovolemia, or hypotension.2 Except for the hyperadrenergic subtype of POTS, a fluid intake of approximately two liters and an intake of three to five grams of salt is typically recommended per day.3 Note that salt includes sodium and chloride. One gram of table salt contains approximately .393 grams (393 milligrams) of sodium. That means that five grams of salt contains approximately 1.965 grams (1965 milligrams) of sodium. This number can be useful when tracking salt in food with nutrition labels, which often list sodium content."

5 grams of salt sounds like so much. I think it probably varies for each individual. I'm seeing a specialist soon and definitely going to ask about the salt because I don't want to be taking too much.

Edit: I take salt pills and you're right that sprinkling a little salt on your food is not enough. Forgot how much salt is in each off the top of my head.

2nd edit: https://www.amazon.com/SaltStick-Electrolyte-Replacement-Capsules-bottle/dp/B002IY96B0/ref=sr_1_3?ie=UTF8&qid=1496179412&sr=8-3&keywords=salt+pills These are the ones I take, they have 215 mg in each pill and I take a minimum of 3 a day.

I carry a pretty large bag as well. I carry at least two bottles of water in my purse when I go away from home at all times and I carry a cloth insulated cooler w/2 of the blue freezer frozen cubes and 4 or 5 bottle waters and snacks w/me at all times as well (cumbersome *sigh*).

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I've even considered using one of the "purse on wheels" something like this maybe https://www.amazon.com/dp/B00CEWTW06/ref=twister_B073K42ZJ1?_encoding=UTF8&psc=1 from Amazon but don't know if I'm ready to take that step and haven't thoroughly thought it through as to where it would actually prove a better situation or not (all things considered) but w/ the purse I carry being so heavy w/all the load of water it wears on my shoulder so that I don't need to add anymore bulk to it b/c I need the room for the water.

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It would be nice though if I could figure a way to be able to carry the instant ice packs for when I'm away from home and get in a pickle and have to find somewhere to lay down b/c can't make it to the vehicle in time (has happened a couple of times when away from home).

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I carry a small cloth w/me to wet down and use so it's not like I feel that I HAVE TO have the instant ice pack but at same time I wouldn't be spilling water on floor w/the instant ice pack and the instant ice pack would be cooler..... I noticed where the instant ice packs state to cover it w/a cloth instead of putting it on skin directly.....

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Having some type of SMALL hard plastic cover may be doable tho. I couldn't figure any other way(s) of having it on my person. I suppose I will have to order 1 or 2 and just try it out.....see if I can maybe find something new or to repurpose that's the exact size and shape as the instant ice pack.

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EDITED: to add: something like this maybe https://www.amazon.com/dp/B00CEWTW06/ref=twister_B073K42ZJ1?_encoding=UTF8&psc=1 from

I've learned the vessel for my beverage influences a lot about its perceived drinkability, if that makes any sense - particularly the lid/drinking edge. It's subtle, seems irrational, and highly individual -- but something to think about.

I like drinking Vitamin Water Zero but I have this sneaky suspicion it isn't as effective on the electrolyte front; my wildly ignorant armchair broscience thought is that the water soluble vitamins (C, etc) have a diuretic effect that counteracts the benefits of drinking it. (That's not really a great endorsement, I guess?)

I've bought a Roar Organics a couple times at the store on sale, but that's going the opposite direction of your affordability question. They are excellent, though -- delicious -and- helpful, and not full of junk.

Have you experimented with coconut water-based drinks?

Hi!

I was diagnosed with POTS a year ago, so I know how scary this is. I urge you to get this book! It has a ton of tips! POTS - Together We Stand: Riding the Waves of Dysautonomia by Jodi Epstein Rhum.

If you purchase the book from Amazon ($24.99), please be sure to login at smile.amazon.com and choose Dysautonomia International as the charity of your choice. Amazon will donate a percentage to DI!

Hope this helps. :)

ME/CFS, POTS, and dysautonomia here: my CFS specialist basically said to have salt/electrolytes with every drink. I typically use a very small pour of lemonade/juice, lots of water, and a packet of ORS - Oral Rehydration Salts ORS (100,... https://www.amazon.com/dp/B00OG8G9UM?ref=ppx_pop_mob_ap_share - includes more than just salt.

Definitely get checked for diabetes but in my experience this amount of thirst is pretty normal.