Top 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

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.

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

Sure! I use Morton Regular Salt (it’s important not to use iodized salt long-term because you can get iodide poisoning) and potassium citrate powder. I fill these vegetarian pill capsules, which are the same size as the Vitassium capsules.

The Vitassium label says in a 2 capsule serving there is 500 mg sodium and 100 mg potassium citrate. So, I figured out what quantity of my ingredients had those amounts, which broke down like this:

According to the labels of my ingredients:
.25 tsp salt = 590 mg sodium
.05 tsp potassium citrate = 100 mg potassium

Because I wanted to be able to measure out my ingredients with normal US baking utensils, I ignored the extra 90 mg/serving of sodium instead of calculating the exact amount of salt that would equal an even 500 mg in teaspoons. If you want to be more precise you can redo my math with weight instead of teaspoons, I just didn’t have a kitchen scale.

So, pretending that 590 mg is 500 mg, the milligrams of sodium/potassium per serving of my ingredients were already (roughly) the same as the milligrams per serving on the Vitassium label, meaning the serving sizes on the packages I had were (basically) the correct ratio already, but since I can’t measure .05 teaspoons of potassium with measuring cups, I multiplied both of the serving sizes until I had more convenient amounts to measure, which gave me my final ratio of 5 tsp salt : 1 tsp potassium.

So, when I make them I mix 5 tsp salt with 1 tsp potassium powder in a bowl and spoon the mixture into the capsules so the extra just falls back in the bowl. This gives me about 30 pills. But if I want to make more/less, I can use any measurement as long as it’s 5 parts salt and 1 part potassium.

These pills don’t necessarily each have exactly 500 mg sodium and 100 mg potassium in each 2 pill serving, but it’s comparable. A size 0 capsule holds 400-800 mg (.8-.16 tsp) and as I showed above, it takes .3 (.25 + .05) tsp of my ingredients to have 500/100mg. Two of my capsules would hold .16-.32 mg, which makes the serving/pill comparison pretty close.

Sorry for the novel, hope this helps!

edit: forgot some decimal points

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.

I put 1.25 teaspoons of salt in a liter of water. I drink 2-3 of these a day.

Get an abdominal compression wrap. Such as this one:

NYOrtho Abdominal Binder Lower... https://www.amazon.com/dp/B005DLKEM0?ref=ppx_pop_mob_ap_share

Is there a chance of you getting better? Or worse? Yes to both. It sucks.

The abdominal compression will help a lot. Like--I went from not being able to stand for more than 2 mins to going back to work (I'm a personal trainer and work 20 hours a week).

If you like Omron, it looks like they make models that pair with your phone via bluetooth:

https://www.amazon.com/Omron-Wireless-Pressure-Bluetooth-Connectivity/dp/B00KW4PO82/ref=pd_lpo_121_bs_t_2

Dude, don't give up. Doctors so often just give up on tryng to really find a diagnosis for their patients when it gets too complicated. There's a good book on a lot of these misbehaviors and miscommunications I'm working through (because often my doctors latch onto simpler diagnosis as well) called How Doctors Think by Jerome Groopman - http://smile.amazon.com/How-Doctors-Think-Jerome-Groopman/dp/0547053649/ref=sr_1_1?ie=UTF8&qid=1418403865&sr=8-1&keywords=how+doctors+think&pebp=1418403868809

Terramed Women Advanced Footless Graduated Compression Microfiber Leggings Tights (Small, Black) https://www.amazon.com/dp/B00M19WAJM/ref=cm_sw_r_cp_api_lwcwyb039588F

These are what I use. When I've run out before, and Amazon couldn't ship it to me immediately, I've also found them behind the counter at pharmacies.

Try this! Add to water! Tastes soft (minerally) but I don't notice it too much.

Elete Refill Electrolyte Bottle, 8.3-Ounce https://www.amazon.com/dp/B0025URYHK/ref=cm_sw_r_cp_api_4YzOzbAV4KFPF

https://smile.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243/ref=sr_1_1?ie=UTF8&qid=1469366892&sr=8-1&keywords=dysautonomia+project

I got this one
https://www.amazon.com/Non-GMO-Citrate-Excellent-Creating-Spherification/dp/B00D393SVS

It's sodium citrate, not trisodium citrate, but I don't think it makes that much of a difference.

Automatic cuffs are nearly always inaccurate for me, especially when my blood pressure is misbehaving. I switched to a manual cuff made to be used on yourself; the stethoscope is sewn into place on the cuff to aid in one handed use. I had no clue how to take blood pressure when I purchased it, and was a little intimidated at the thought of learning how. However, as it turns out, it is simple!

Omron Adult Home Blood Pressure Kit

I figured out my automatic cuff was giving me inaccurate readings when I took it with me to the doctor to check it against their manual cuff. Prior to that, I had no clue! The systolic measurement was off by 10 or more each of the 3 times we checked it. My cardiologist said automatic cuffs are inaccurate for a decent sized chunk of the normal population - by far not enough where they are useless, but enough where it is worthwhile to check if they provide you with the same reading as someone gets manually at a doctor's office.

I use a pulse ox for my pulse.
CMS 50-DL Pulse Oximeter

I have confirmed systemic nerve damage. I’ve been told that it falls under the dysautonomia umbrella rather than the direct POTS umbrella. I have both, along with EDS and others.

There are meds that supposedly help with the pain but I’ve never found those useful. My go tos are
Nerve blocks- for spinal disc degeneration/nerve pay.
TENS unit- TENS 7000 2nd Edition Digital... https://www.amazon.com/dp/B00NCRE4GO?ref=ppx_pop_mob_ap_share
Biofreeze
Cutting caffeine and stimulants when things are bad
Intermittent fasting
Meditation
NSAID
Nerve blocks (seriously I get these every six months to keep the pain under a 10/10).

You can find a pain center/doctor and get a nerve punch biopsy to confirm if need be.

In all honesty nerve pain is just as big of an issue as POTS for me, and they both can fall under dysautonomia.