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Trioral follows the WHO's recipe exactly, with no additional sweeteners. You will probably want to add some kind of sweetener just to make it palatable.
Trioral or Normalyte Pure. I use both. I get Normalyte from my doctor (as samples) and I buy Trioral because it is cheaper (cheaper per packet, especially when you buy in bulk, and it has double the amount of electrolytes per packet compared to Normalyte). I use Normalyte for on the go (it is the right size for one bottle of your liquid of choice) and Trioral for home (I use half a packet and save the other half. A whole packet is too salty for my taste). They taste the exact same to me. I use them because artificial sweeteners and even stevia make me really nauseous.
Showering is a special type of evil. I try to take sink showers most of the time until I really actually need to shower. And then when I shower, it is an all day affair. Prepping (mentally and physically), then showering, then recovering for the rest of the day.
For sink showers, I use a wet rag and body wash. Soap up, rinse rag, rinse with wet rag. For my hair I use No Rinse shampoo. I put it into a foamer bottle (just a foaming hand wash bottle that I rinsed out) and it makes it SO much easier to distribute in my hair. You just massage it in then towel dry it. That is it! And you hair is actually clean, not just masked with itchy powder like dry shampoo. Not to mention, NASA astronauts use it (like, this specific brand)!! If NASA uses it, you know it is good!
I'd like to add that she needs medical grade compression socks, not just any compression socks. Look for something that is Medical Grade Class I (20-30 mmHg - I use this brand on Amazon that comes in cute patterns). Expect them to be tight. It was difficult for me to get them on at first, but they're fine after practice.
Make sure you actually measure for these to get the right fit!
This page discusses the different grades of compression stockings.
I have symptoms pretty much identical to your mom and those compression stockings have been a serious improvement for me.
Edit to add: She should wear the compression socks during the day only and not wear them to bed unless specifically directed by a doctor.
hey! a lot of the ones i know of do contain sugar or variants, but i have seen buoy and that is toted for not containing sugar or artificial sweeteners. i have heard they are working on a bottle return program for after the pandemic.
i have also used lyteshow before, and i really enjoyed it. no sugar added to this one either.
good luck!!!
I got one of these for when I have to do a lot of hiking and go to events. Really small and lightweight, with a strap I can carry across my back. And super affordable. Not super sturdy or supportive, but a good balance of convenience, weight, and cost.
This Amazon one is nice but you can also find them as outdoor/camping stores. https://www.amazon.com/dp/B000FXVAYW/ref=cm_sw_r_cp_apa_BGhGBbHSY035S
There's a whole suite of autonomic tests that they usually run along with a TTT that can support a diagnosis or point to a different type dysautonomia.
There's the valsalva maneuver (blow into a tube at a specific pressure for 5 seconds, for 3 reps) while they monitor heart rhythm and other stats. There's the one where they send a very low current through your lower legs and then your arm to test your nerve responses (I'm probably not explaining it right, but they look at what your nerves do in response, basically). That can help determine if you have small fiber neuropathy, which can cause POTS.
There's a couple others I don't remember because when I did it I was so exhausted by it, haha. But you can check here for examples. They might not decide to do all of those tests. (I know I didn't have each of those things done)
I used this just because I'm lazy and sometimes just want to sit. I have a tv I can see from my shower so sitting and watching TV while showing is fun.
Shower Head Holder Suction Cup Handheld Showerhead Bracket Adjustable Height Shower Holder, Removable Handheld Wand holder Wall Mounted Suction Bracket https://www.amazon.com/dp/B07Y2YLV14/ref=cm_sw_r_apan_glt_fabc_57WR0BG8J6XZ1BBFQYW6?_encoding=UTF8&psc=1
I recommend these. :) They are helpful to me! They are a fan that rests around the neck, so if you can tolerate that it would look into it! https://www.amazon.com/dp/B08Y1K3JZJ/ref=cm_sw_r_cp_api_glt_fabc_4QX7P5BAQQ745MZVC7JJ
There are many different models of cooling products out there and the collections are different in US than in Europe I've learned. The best is the ones with the fabric absorbing water and slowly cool you without making you wet! So nothing melts, it's just fabric that's soaked in water. Sports people use it very often!
I would say the best way to wear a cooling product as maybe a vest is to put it on whenever you are in a room that's not cold enought for you, or when you go outdoors out of the car. To sit in a AC controlled car with the cooling vest might get a bit too cold (how lovely that might sound!). Same with the hat - you put it on when you need it to cool your head.
And here's a cooling hatwith same cooling fabric functionality.
I have one of these. They work really well. And the opening of the window only has to be a few inches. BLACK+DECKER BPACT08WT Portable Air Conditioner, 8,000 BTU, White https://www.amazon.com/dp/B01DLPUWL2/ref=cm_sw_r_cp_api_i_lM2eFbDMPET0C
Definitely try getting a disability accommodation for the AC. I would recommend reaching out to a non profit housing rights or disability rights law firm if they say no because they’ll be able to help you navigate it & often offer free or significantly reduced rate support. I work at a non profit firm in Seattle and sometimes people just knowing that professionals who know the law are paying attention significantly change the behavior.
I just did a quick google search for Philadelphia (I think I saw somewhere that’s where you’re at?) and it looks like fair housing ada accommodations are similar to Seattle’s & I’d guess the AC would be an acceptable accommodation. Here’s a link: https://www.palawhelp.org/issues/disability/housing-discrimination-and-fair-housing
If it’s not though, you can get an air cooler which is like a tank you plug into the wall and fill with ice + water. It blows cooler air out through a fan! I have a variation of this one: https://www.amazon.com/Honeywell-Portable-Evaporative-Humidifier-CL201AE/dp/B00ILRBRQU?ref_=fsclp_pl_dp_7
It’s definitely better than nothing but I’d get the AC if you can. The air cooler isn’t nearly as strong/ effective, it’s really physically strenuous (for me at least) to fill it up with the amount of water it needs, and it makes the space it’s in a little humid + smell a little plastic-y.
Wishing you the best!! I absolutely get where you’re coming from on the heat. Overheating has brought me to the edge of an autonomic attack multiple times. It’s brutal!
/u/bookmonster015 /u/poodlepuzzles Sorry it came off this way -- I definitely didn't intend it to be another "it's all in your head" because I know we've all heard that before. I definitely understand how it can come off that way though. I do think things such as scheduling, improving sleep habits, and balance/moderation can definitely help anyone who's symptomatic. My exercise and meditation practices have definitely been huge too and I wrote about those benefits at https://wordpress.com/view/powerthroughpots.wordpress.com. I definitely think different things will work for different people and different conditions. Thank you both for your feedback and hopefully, those other posts can help!
I use something like this:
https://www.amazon.com/Chill-Pal-Multi-Style-Cooling/dp/B01K998LUW
​
I like to use it as a headband (I get a lot of cranial sweating) or around my neck. It won't prevent getting hot but it does make the summers a little more bearable!
Have you ever tried a TENs machine? I use one called Dr Ho, and I was first introduced to them by my physiotherapist when I had a really bad shoulder injury. For me, I often get debilitating headaches when my shoulders/ neck tense up (I call them muscle tension headaches). I put the electropads on my neck and at slowly increasing rate until it tenses up my neck/ shoulders without hurting them. It's been a huge game changer for me, because I would deal with these headaches for days. I don't know if they'll help you, there's alternatives to Dr Ho, and you might be able to find a used machine and just buy the electropads replacements which would be cheaper.
Yes I definitely have interstitial cystitis and I'm wondering how many of us do cuz I've actually already come across quite a few people that have a whole host of illnesses alongside dysautonomia.
So currently I use the product linked below it's the only thing I can tolerate for electrolytes because we can't have Gatorade cuz it's citric acid or B6 vitamins but then the thing is is all of these salt electrolyte tablets usually contain potassium so if you're already flaring and you take the salt sticks you're not going to be feeling great.. and yes I salt the crap out of everything too lol.
https://www.amazon.com/dp/B002IY96B0/ref=cm_sw_r_cp_apa_glt_fabc_KZZ51TB05AWP5FEBR50S
I absolutely understand! Sorry if it came off weird because text is fun to understand lol. Yeah totally, I named my lightning and have been zipping around the tight lower floor of my townhouse till I’m ready to bring it out to the streets. For ref: I have fibromyalgia and possibly dysautonomia.
Lightning the wheelchair Drive Medical Blue Streak Wheelchair with Flip Back Desk Arms, Swing Away Footrests, 16 Inch Seat https://www.amazon.com/dp/B00C2B6GBW/ref=cm_sw_r_cp_api_glt_fabc_QPXWHDD3P9SDBZYND4PR?_encoding=UTF8&psc=1
Thank you!.
I ended up ordering several styled from Amazon (The Dysautonomia Project Book suggested Spanks pull up one, but they don't make it in my size.)
I'm all about comfort, so waist cynchers kind of scare me & I'm not trying to reshape myself (which seems the concept behind that ine-not reshaping)
Medicare doesn't cover prescription wear but you can get the same hg graduated compression from Amazon for $70 less ($meducal store are $100 for SOCKS!)
I'm wondering if I wire ankle compression over the sock might help.
I found this line and it is tax deductible.
Not to be crass but I like the open crotch do you can wear underwear over it underneath & not have to take off the whole garment.
https://www.amazon.com/dp/B07D7JD3QF/ref=cm_sw_r_cp_apa_fabc_A0FHK83K538D5ZWS6B0K
They have a lot of other styles.
Bamboo, 100%.
It has been a lifesaver for me! I got my first bamboo bedding secondhand for $15, but I later found this. https://www.amazon.ca/gp/product/B07RWGM3MX/ref=ppx_yo_dt_b_asin_title_o07_s01?ie=UTF8&psc=1
(Could only find Canadian link)
It was on sale at the time and is probably the nicest duvet cover I own. Since I don't use a top sheet, I just have a duvet cover that I change regularly.
These guys make sheets, too.
They do wrinkle heavily, but they don't pill and are the softest and coolest material I've ever owned!
I used to get severe night sweats, but with this bedding, I'm so much more comfortable!! Definitely recommend!
“Salt Stick Caps: Buffered Electrolyte Salts” (aka salt pills). I get the kind without caffeine because my heart rate isn’t a fan of it. Caffeine one has a pink label whereas the non-caffeine one is yellow. I order it online from REI but you could probably order it directly from the company. Because no matter how much salt I consumed, it wasn’t enough to be beneficial. It doesn’t hurt my stomach since it’s in a capsule which is good because the first few years I couldn’t keep food or liquids down well. So if I ever slacked, I would wind up having to get IV fluids. I hate any type of liquid medication. My stomach just can’t handle them. Honestly that and the best thing for my POTS was compression stockings. Good luck
Swallowing them hurts or the contents of the vitamins cause a reaction? I have trouble swallowing larger pills (strains my throat and is painful) but the Wild brand Vitamin D3 & K2 is really small
https://www.amazon.com/dp/B07H4B8GR9/ref=cm_sw_r_cp_api_glc_fabc_4Wv7Fb9B6N92E
Sodium Chloride Tablets 1 Gm, USP Normal Salt Tablets - 100 Tablets https://www.amazon.com/dp/B000GCN130/ref=cm_sw_r_cp_api_i_CyHdCb63A6PZ2
I dislike promoting amazon but this is at least what to look for
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
I recommend putting the salt in capsules (OO capsules hold approximately 1gm each) or getting tablets. Here's the book I suggest:
That's so sweet of you to want to help! For me, the biggest thing is for people to educate themselves on my illness. Maybe you want to read this book:
Honestly, just knowing that you care is going to be the sweetest thing you can do. As time goes on and you understand the nuances of this person's particular symptoms, things will easily fall into place if you care.
I like this adrenal support herbal supplement by Crystal Star. I have tried other brands, and they're good, but this one is my favorite. I hope it helps. My local Nature's Grocer sells it cheaper, but you can get it from Amazon or direct from their website.
I get mine from amazon. These, I bought in x-small and medium, so they feel like 30-40mmh and 15-20mmhg respectively . I put the x-small ones on for days when I know I'll be out for a while. Note that some colors have a zipper on the back (not really functional pocket), which can be uncomfortable (I have black ones w zipper and a grey one w/o).
I have never tried salt stick but I use the Oral Rehydration Solution from the WHO daily in a bottle of water and sometimes with a bit of pineapple coconut water for my salt and electrolyte intake. I never feel nauseous from it though it certainly tastes better mixed with more than water. I usually have at least one packet but often have at least 2 a day and 3 when active or on my period. Highly recommend.
Oral Rehydration Salts ORS (100,... https://www.amazon.com/dp/B00OG8G9UM?ref=ppx_pop_mob_ap_share
Surprised to find this question in a dysautonomia sub, but not surprised ignorant people are down-voting it. Thought my 70+ year old doctors are some of the few doctors who still know that chronic throat clearing can be caused by mucus dripping down from the nose due to autonomic nervous system dysfunction (aka dysautonomia).
I've had the dysautonomia kind of mucus for over 50 years 24/7/365. My doctors know it's a reaction to neurotoxins in the air, so every time I take a breath of neurotoxic air, my brain tells my nose to create mucus, then thick mucus drips down my throat until it clogs my throat and I cough it up. It sounds like wheezing to doctors and I usually get misdiagnosed with asthma or sometimes acid reflux but medicine for those conditions made it worse.
Here's what I've tried:
- Every med that ever worked is no longer on the market.
- The mucus is yellow unless I use a nasal spray for sinus infections.
- Sleeping on a wedge makes it worse. Sleeping on my stomach or side is better because my nose isn't so far above my throat
- Drinking hot liquid helps because the heat thins out the mucus better than just putting my nose in the steam.
- ENT considered surgery but he wasn't convinced that it would help if I still have to breathe neurotoxic air.
- Eating pushes the mucus down, but causes weight gain.
- SinuOrega stops the mucus forming for about 30 minutes. Similar ingredients as OP's recipe but adding oregano oil makes the big difference.
Welcome to the club. I take Northera, it helps alot. I also use this abdominal binder which helps alot as well. https://www.amazon.com/ORTONYX-Breathable-Abdominal-Postpartum-Postoperative/dp/B07CW362CZ/ref=sxin_18?asc_contentid=amzn1.osa.929b900a-691f-448b-baeb-315ab22adba2.ATVPDKIKX0DER.en_US&asc_contenttype=article&ascsubtag=amzn1.osa.929b900a-69...
Salt + water to increase blood volume Saltstick is great because it's got magnesium etc as well
Compression socks/stockings/leggings Start using compression socks with less squeeze but this is where I'm at https://www.amazon.com/JOBST-Relief-20-30-Compression-Closed/dp/B0012041J8
Feet in air while laying down + massage the feet and legs to get blood circulating and get blood back to your upper extremities
Midodrine to increase blood pressure (propranolol slows heartbeat)
I've got this blanket and it's pretty good. One side is soft if you want to be warmer and the other side is like a silky material, which feels much cooler than a regular blanket.
Palmitoylethanolamide (PEA) is something I tried as a Hail Mary because it was mentioned and I never had heard of it before that. I have lots of failures on that but occasionally I get a winner.
I pretty sure it was the PEA that stopped the internal vibrations on waking up most days. It’s a food item that’s found in eggs and soy and a few other things - been studied since the 1930s.
When I first googled it, some of the first stuff was saying it caused feelings of euphoria … made it almost sound like something to get high on. It does seem to both lower anxiety levels a bit and take an edge off the pain levels.
My husband and I take it daily - I give to kids as needed for growing pains from being hypermobile kids. Much safer for their systems than Tylenol or Ibuprofen in my opinion plus it’s considered a mast cell stabilizer.
Hopefully I linked the full name and what i order
Here's a couple of things I do because I'm convinced that lines are out to get me, especially if I just walked around a store and am starting to overheat:
(1) I take advantage of stores' delivery or pickup services whenever possible. Lots of grocery stores have free pickup, and so does Target. They'll bring a cart to your car and load your stuff into your trunk, back seat, or passenger seat. I'm ready to ride the coattails of other people's privilege.
(2) I got two of these collapsible stools. I keep one at home and one in my car. If I go to an actual store, I take it with me. Line? Pop that sucker out and make everyone jealous. At home, it's good for sorting laundry, cleaning out the fridge, or scooping the cat litter while staying upright.
I have a collapsible stool that I can carry in my backpack and it is a life saver in these moments! I just used it at the airport and when waiting to board the plane and waiting at baggage claim, it helped me feel so much safer and kept my pain to a minimum. Here is the link to the one I got.
I do really well with these, take them with food in your mouth because they aren’t coated! I tried the vitassium capsules but just wasn’t doing well on them for some reason.
Sodium Chloride Tablets 1 gm, USP... https://www.amazon.com/dp/B085VH1NM9?ref=ppx_pop_mob_ap_share
I'm very photosensitive, and I feel like blue/ white light is the worst for me. Even, like, daytime sky sometimes : (
Glasses now have an option for a blue light filter coating (they might call it something like screen light filter). I got that at the highest option I could, and now my glasses have a green tint. (You can't see it unless you hold the lense up to a white cloth.)
I feel like yellow glasses work better for me than regular sunglasses. They cut the brightness better somehow without makeing things harder to see. (I can wear them when I drive at night - headlights are hell!).
In a similar vein, any "night time" or "sunset" filter I can turn on for screens always helps me. f.luxf.lux will add it to computers and other devices that don't already have it, and you can set it up with your sleep cycle.
Are you drinking electrolytes with sugar? You can skip the sugar - I use this recipe minus the sugar:
https://lifehacker.com/make-your-own-sports-drink-on-the-cheap-5334003
Seriously consider talking to your doc. Peeing all night isn’t normal, just no one ever mentions that you can do something about it.
I wear thigh high compression stockings that are 20-30mmhg (although they could be a bit stronger so 30-40 might also be good). Got them off Amazon (here ). I’m also from Canada, don’t remember the shipping cost but it was way cheaper than the $90 pair that I got at the pharmacy. One thing is though that the toe part is cut off, idk if that would affect its efficacy for blood pooling. They work quite well for me.
Liquid IV, battery powered fan, snack, water. I LOVE my fan, enough so I just bought a second one. Battery lasts for ages and its a lot stronger than I expected. Here is a link.
Let me clarify in saying it’s not compression gear I’m sleeping in just a good snug pair of high waisted leggings. I put my compression pants on as soon as I get up and don’t take off until end of day. A lot of my issues occur at night so the right yoga pants are a compromise.
+MD 15-20mmHg Women's Open Toe... https://www.amazon.com/dp/B077JYBH32?ref=ppx_pop_mob_ap_share
These are my light, good day tights that I started out with. Again, 30/40mmhg is recommended but this is a good start.
Yeah I feel you. The only thing that they do currently is put you on a good b-complex vitamin which I guess can help with the nerves themselves.
Look into mag threonate. Like this one cuz it's got both the body and brain mag in one. Threonate specifically targets the brain which controls the rest of our mangled bodies 😝
I also forgot to add that Dr. Wilson has a very helpful Instagram. It's called PotsWilson. He is so dedicated to Pots patients. He and the staff at The Cleveland Clinic do a wonderful job. Last year they had a virtual art show with art created by people with pots. It was a beautiful and moving experience to participate in it. Dr. Wilson and one of Tha patient advocates also wrote a book about pots. It's on Amazon. It's called Mind Games. I haven't read it, but they are both amazing, so I would bet it is too. MIND GAMES https://www.amazon.com/dp/B09TWVVCNK/ref=cm_sw_r_apan_0YDYPQ92J2PNBG1ZW21X
especially the watches. i bought a fit bit after deciding i was done dealing with the pulse oximeter making it feel like my finger was burning. my entire lower arm went numb, and the band wasn’t even tight. pain went away about an hour after having it off. i’m probably gonna try this next but i don’t have high hopes
The Dysautonomia Project is the title of a book my cardiologist recommended and I know other people with POTS have read it and found it helpful too. https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243
OMRON Blood Pressure Watch is the only one that I know of, but it's super expensive and doesn't have very good reviews
i would try something like this. there are many different good ones but I read oxide is the least effective: https://www.amazon.com/Life-Extension-Magnesium-Vegetarian-Capsules/dp/B00A7HDABW/ref=sr_1_5?crid=2JZ2ISR29X9NL&keywords=life+extension+magnesium&qid=1660239424&rdc=1&sprefix=life+extension+magnesium%2Caps%2C83&sr=8-5
The one I got doesn't appear to be sold anymore, but it wasn't a specific brand, it was one of the cheapest options off Amazon. This one looks exactly like it, and I see others that also look the same being sold by different companies under different brand names. I figured that for monitoring how my bp reacts to walking and such, the exact numbers weren't as important to know as the pattern of changes. Works very well for that, is pretty accurate on the numbers as a bonus. Only problem is, it's finicky about the slightest movement you make while it's measuring.
I also had low blood volume and couldn’t even tolerate licorice root because it gave me weird heart rhythm changes. I found Blood Vitality through divine intervention (seriously). It worked so well so quickly, it took away my tachycardia and shortness of breath.
I’ve tried 5 or 6 different neck fans and this 6 speed has been my favorite so far
Look on Amazon and Walmart. They weren't "snazzy," but not just white. Here's the one I got (I have a narrow tub). It has some blue: https://www.amazon.com/gp/product/B09CZ1CBLB/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Have you tried any medication for it? Midodrine and ivabradine are drugs to consider. I've just started Midodrine and the difference is incredible.
I recommend reading this book: https://www.amazon.co.uk/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243
I’m a guy and I used to be an endurance trainer; my legs are huge. I have to use these in like 3x. They are from Amazon. They work well for me.
Mojo Compression Stockings For... https://www.amazon.com/dp/B08J4HJZCZ?ref=ppx_pop_mob_ap_share
I don’t drink ice water, even at restaurants. At home, I microwave my water, crystal light lemonade, etc…Also, wool socks have been life changing for me. I use these https://www.amazon.com/dp/B07VXKPYVL?ref=ppx_pop_mob_ap_share
Also, merino wool can be quite expensive, but I use Poshmark to find lightweight wool sweaters to use as a base layer. Merino wool is nice because it’s breathable and since I am prone to getting hot flashes and overheated, it helps.
Perhaps these for the next heatwave: https://smile.amazon.com/Daytime-Privacy-Non-Adhesive-Decorative-Control/dp/B07P9Q4ZP8
Reflective film for your windows. Super cheap.
DGL is not used for POTS and OH. DGL means it’s deglycyrrhizinated so that it will not raise blood pressure. People with normal or high blood pressure take that form. But for POTS and OH it’s necessary to take pure licorice root for the very reason that it will raise blood pressure and blood volume. I use this:
Nature's Way Licorice Root Capsules, 900 mg per serving, Premium Supplement, 100 Vegan Capsules https://smile.amazon.com/dp/B000633BUC/ref=cm_sw_r_awdo_BFXD5ST5TSJF2CF2EKVD
I strongly recommend getting a shower chair as soon as you can. One with a back and maybe arms. Some shower stools are flimsy with no back support.
I really like this one and it’s relatively affordable -
Drive Medical Bathroom Bench https://www.amazon.com/dp/B002VWK0WI/ref=cm_sw_r_cp_api_i_8MJJD2DJXZ4QZMBNHV2Y
I know what you mean though. I turned 35 yesterday and it feels like what’s supposed to be the best years of my life have been ruined by medical conditions. Just have to take it a day at a time. If you have friends or relatives nearby, ask for help with some household tasks like laundry and cleaning.
Waist support (also helps with dysautonomia): www.amazon.com/dp/B01N2YVYCU
SI stabilization belt: www.amazon.com/dp/B000NIFVM6
Soft neck collar (also helps with sleep on a plane): www.amazon.com/dp/B01N0XNAD5/
Any sort of pillow for the small of your back (a wadded up blanket does the same): www.amazon.com/dp/B00HANX2VO/
An all purpose neck/low back/other pillow I’ve always loved: www.amazon.com/
Also, roll out a lot when you arrive. One of my favorites is using this type of device from sacrum to neck, multiple times a day. It helps get everything aligned again: www.amazon.com/dp/B01M3PTP1C
You’re welcome, I hope you feel better soon! I have a pesky tooth that likes to cause problems, too, and I can’t afford to get it pulled right now because my money is tied up in a probate case so I’ve been using this product as needed and it seriously works wonders. I was shocked to find a natural product that actually quells infection and it doesn’t mess with my dysautonomia. It’s not meant to be taken every day but when I feel sick and I take some it makes me feel pretty darn amazing!
Don't know where you live but if you can find the Gastrointestinal Gel from Silicea you must give it a try!!! It really helps after frequent use for a couple of days. Also stop the immediate nausea feeling.
Most of my symptoms go away pretty quickly if I lay down. I also have a portable neck fan like this to help me cool down and I use lemon flavored things to help with bouts of nausea. I usually throw up right before I faint so I've spent a ton of time trying to find things to help with that and the best thing I found was straight up licking a lemon slice, but lemon mints and candies are more convenient lol. If I'm home I use an ice pack on my forehead, chest, or back of the neck but that fan is surprisingly effective too
Possible benzo replacements. I've tried lots of herbal remedies but these actually work
Kratom. DM me for a list of places to order from that are quality without breaking there bank
Suntheanine Stress-Relax Chewable Suntheanine L-Theanine 100 mg by Natural Factors, Non-Drowsy Stress Support for Mental Calmness and Relaxation, Tropical Fruit Flavor, 120 Tablets https://smile.amazon.com/dp/B00B95I5GQ/ref=cm_sw_r_cp_api_i_KT0509H68JKTP8ZPPG5G?_encoding=UTF8&psc=1
Pharma Gaba Stress-Relax Chewable Pharma GABA 100 mg by Natural Factors, Non-Drowsy Stress Support for Relaxation and Mental Focus, Tropical Fruit Flavor, 120 Tablets https://smile.amazon.com/dp/B00B95J2QI/ref=cm_sw_r_cp_api_i_JSYQTEWFQXJMQYWZG9Z8?_encoding=UTF8&psc=1
Good luck!
I am not sure you are able to use this, as it does have fragrance added (though it is very lightly scented, fragrance is still fragrance), but is has been a life saver for me. It is No-Rinse shampoo (amazon link). I also have skin sensitivities and have no issue with it, though I can use some fragrances. I still have to use natural deodorant and soap though. I can not use dry shampoo like batiste as they irritate my scalp too much.
I bought a foaming soap bottle (just a foaming hand soap that I washed out) and put it in there, and it pumps out as a foam and it is much easier to apply to your hair. I use enough to throughly wet my hair then towel dry. You have to towel dry it though or the oil just stays in your hair. But when it dries, it feels like I actually washed it. It is not just a cover up like dry shampoo, it actually cleans it.
I can now take showers again (though I still have to take them as cool as I can stand and they zap all my energy), but I still use this to extend the time between washes.
As for body washes, I take sink showers. I take a washcloth and wet it, put my body wash on it, then soap up, rinse washcloth, and then wash away soap with rinsed rag a few times and I am good to go. I still use this as well to quickly wash my underarms real quick without having to shower.
I completely get where you are at though. A year and a half ago, I could not even be in the bathroom with the shower on, as the steam alone would make me pass out. Not being able to shower sucks so bad and is dehumanizing. People have started talking about it on here though more and it is becoming less of a taboo subject in this sub, as TONS of us experience this. I would search "showering" on the sub and you should find tons of posts.
I wish you the best of luck!
My cooling neck thing.
It uses phase change cooling so it stays 58° and you recharge it in 20 min in ice water.
Very ergonomic.
This was totally worth it
Black Ice CCX Personal Cooling System Cool Collar https://www.amazon.com/dp/B00NGYDKEA/ref=cm_sw_r_apan_i_VNDBFFAWQF957NER5XVN?_encoding=UTF8&psc=1
But i have trouble when things touch the front of my neck so i put it in one of these (actually i got them at the same time & the polar Ice one stinks because the ice packs dont conform to the neck so i put the black ice ones in the neck
(For some reason something was wrong about the picture of the black ice and the number you get... Only order the black ice from the black ice amazon store or their site).
You can also get a fishing vest or construction vest and make the $$$ dual phase polar ice for pennies (ok maybe a few dollars) with some of those water absorbing gel crystals and a food vacuum saver.
I need to add that part to my gear. (A vest).
DIY vest. I am maybe going to get something slightly more fashionable and add pocets, or make my packs the right size for what i am going to buy
https://www.dinet.org/forums/topic/23594-diy-phase-change-cooling-vest/
All that said. I try to just stay in temp controlled environments.
I want to do more outdoor stuff, but not sure what yet.
Frozen icepacks in your purse or backback that you can take out and place on back of neck, wrists, tummy is a cheap simple option
Also moist bandanas kept in a waterbottle with ice pack, that way you can take a bandana out and wrap neck, forehead or wrists with it
Personal fan with mister
If you have some crazy pocket change and this is a common issue for you, there is this device ive heard of, but never personally used. Its in my dream medical equipment list lol
I’m not sure, but tooth infections are hard on the body - especially if you’re in pain - so it seems possible that it could trigger some dysautonomia symptoms. I don’t have insurance so I use a natural product called Christopher’s INFX to quell tooth infections and it works like a charm!
Thank you so much. Ever since I was a child I noticed myself things were always off. Always asked kids if they felt weak or shaky after jogging in hot weather and a lot of them said no. Figured it was just mild heat intolerance. Bus rides home were ridiculous being the first one on and last one off during brutal heat. By the time I got home, this weird shakiness would ensue and would have this paleness on my face. It would immediately resolve upon eating too which was weird.
Just this 2016 I stopped sweating a lot. I do sweat but just mildly. Was babysitting a friends kids and they all pointed out to me why I wasnt sweating and that’s when it clicked. Took awhile for me to come to terms that I had autonomic dysfunction. Neurologist and cardiologist kept brushing it off bc tests came back normal. No POTS so they said neurocardiogenic syncope. Buffered salts did absolutely nothing for me and they still dont. Nuun, Thermotabs, Drip Drop, nothing had helped. My heart rate has been steady in the mornings now too. Have a pulse ox and every morning my heart beat would go 96, 83, 61, 90, 99, 110, 65, 76, 89, 81, 85- - all over the place.
So far have felt a bit of palpitations from the vit b1 but nothing too bad. Really hoping this helps me as i’m out of options at this point. This woman’s story resonated with me 100%. Just feel bad I didnt start sooner, even here on the forums and facebook groups so many people told me to take thiamine but I would roll my eyes thinking they were crazy lol. I was the one that was crazy
Check out this book:
Activate Your Vagus Nerve: Unleash Your Body's Natural Ability to Heal https://www.amazon.com/dp/1612438741/ref=cm_sw_r_cp_api_i_Q5VY6B7V8KZNGTFS5ZDC
It’s really empowering. I also have a severe case of dysautonomia and POTS.
For the compression socks, I like Bombas. Downside is they’re expensive. There’s some on Amazon that work well too. The 10-15 mL of compression works perfect for me but there are stronger socks out there. I’ve attached the links below for both.
SB SOX Compression Socks (20-30mmHg) for Men & Women – Best Compression Socks for All Day Wear, Better Blood Flow, Swelling! https://www.amazon.com/dp/B01N7QMYOE/ref=cm_sw_r_cp_api_i_83TQS4S9TGMDBBBM3GQS?_encoding=UTF8&psc=1
Copper Compression Socks For Men & Women Circulation-Best For Medical Running Hiking Cycling 15-20 mmHg https://www.amazon.com/dp/B07PDJM68F/ref=cm_sw_r_cp_api_i_JQ8J5AZKWAH6HSWRMSDB?_encoding=UTF8&psc=1
The copper ones are thin, but less compression. Sometimes you might get rubbing issues with those. The sb Sox are thick but can be a lil warm.
Liquid IV is NOT the same thing as WHO rehydration salts, it will make the dizziness worse. You can also overdose on one of those b vitamins if you use multiple a day. WHO rehydration salts is a specific formula to fix dehydration. Here is a link:
https://www.amazon.com/Rehydration-Organization-Poisoning-Electrolyte-Replacement/dp/B00OG8G9UM/
They don't taste good.
I actually got mine about 10 years ago from my PT at the time. I do see them even on Amazon now!
Occipital Release Tool for Pivotal Therapy - Cervical Traction Neck Pillow - Lumbar Dysfunction, TMJ, Denneroll, Neck or Shoulder Pain Relief, Soft Tissue, Spinal Alignment, and Tension Headaches https://www.amazon.com/dp/B07LH8XTX7/ref=cm_sw_r_awdo_BD97PWEDPB1CGQM6SX4R
Thigh High Compression Stockings, Closed Toe, Pair, Firm Support 20-30mmHg Gradient Compression Socks with Silicone Band, Unisex, Opaque, Best for Spider & Varicose Veins, Edema, Swelling, Beige M https://www.amazon.com/dp/B0778G16PY/ref=cm_sw_r_apan_glt_i_G5JS6050DA75RX9SWVMZ?_encoding=UTF8&psc=1
These are the ones I've been using for the past year. They're much more affordable than most others and they hold up really well. These have the best compression out of the ones I've tried without spending hundreds on name brands or medically fitted ones
Oops, forgot I was in the dysautonomia sub.
If it's worse at night it could be that your autonomic nervous system leans parasympathetic when you lie down and that can make your nose run. My ANS used to be parasympathetic 24/7, but lately, it's only at night.
Neuro-peptides help me with the runny nose and other dysautonomia symptoms but after a while, they stopped helping as much. So I added SinuOrega, which numbs my mucous membranes so they don't generate mucus for a few hours.
i also have sensory sensitivities with clothes and the ones i wear are really great. sometimes i even forget i have them on. here’s the link to them
I hate almost anything on my legs, I have ridiculously sensitive skin and everything from fabric to moving to sweat (even someone elses) makes my legs itch horribly. I bought these and I could tolerate them: https://www.amazon.com/dp/B01N6N3DXV/ref=cm_sw_r_awdo_TYMKR22DX72Q8ZJN15E8
I could leave them on for 8 hours without overheating or wanting to rip my skin off.
That being said, I don't feel any compression gear ever helped me, and I've passed out in quite the variety. My current Dr told me not to bother trying, that he's only seen evidence of it helping in pieces that go all the way up - ankle to bust - and that no one's ever willing to wear that much. Of course that's anecdotal and you may have a different experience.
I just got this one and I am in love!!
LEAGOO Fabric Padded Armless Home Office Desk Chair, 120° Rocking Mid Back Ergonomic Chair Computer Task Chair, Swivel Vanity Chair with No Wheels https://www.amazon.com/dp/B09J8MVJ7L/ref=cm_sw_r_cp_api_glt_i_GY4Y1MHHHA0TXVPM3FCP?_encoding=UTF8&psc=1
I got a little fan that hangs around my neck- It's powered by batteries and it blows air straight up at my neck and chin so at least while wearing the mask it doesn't feel like my entire face is on fire. Links below.
I mean, I feel you, because I sweat like I'm trying to cause a tsunami with just my person- it's ridiculous.
Ok, so here's the thing that blows upward, I also have a million mobile fold-up paper hand fans because they fit in pockets and purses and plus they just look so chic sometimes. I've also eyeballed these things because they might be cool to point at my forehead? full disclosure I have never actually bought one of these things so I have no idea how well they work.
OMRON PeakAir Peak Flow Meter, Measures Changes in Your Lung Air Flow to Assist in the Detection of Asthma Attacks (for Children and Adults) https://www.amazon.com/dp/B000N3YFA0/ref=cm_sw_r_cp_api_glt_i_M363RDHR5PG2VQ7HDVGW
You got it!
You're welcome! I tried a couple and this one is my favorite. It's well made and the adjutable band is nice for when you want to loosen or tighten up, for example loosening while eating, tightening when standing for long periods. https://www.amazon.com/gp/product/B07CW37W64/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I can’t live without it. When I wake up with the pain, I get the hat and crawl back into bed and sleep a little more and when I wake up it’s at least a 75% reduction. It looks so stupid on but it’s holy grail for me.
I learned from TMJ setting off trigeminal pain to heat and ice at the same time and rotate. So I’ll have the headache hat on and the shoulder heating pad. And then switch to one of those microwaveable heat packs on my head and a neck ice pack. For some reason the ice and heat at the same time confuses the nerves and can shut them off. I’d say half the time it works for me and the pain ends and I am just left with the “hangover” of the episode. As long as I have one on the occipital and one on the trap trigger point it seems to stunt it.
This is the hat I have.
Headache and Migraine Relief Cap - A Headache Ice Mask or Hat Used for Migraines and Tension Headache Relief. Stretchy, Comfortable, Dark and Cool (by Magic Gel) https://www.amazon.com/dp/B07DG2Z1NH
Thank you for all the tips! I ended up choosing this one and it’s more comfortable than the sport band it came with. I just need to wash it as it has a bit of a chemical stink. ENJINER Stretchy Nylon Solo Loop Bands Compatible with Apple Watch 38mm 40mm 41mm 42mm 44mm 45mm iWatch Series 7 6 SE 5 4 3 2 1 Strap, Sport Elastic Braided No Buckles Clasps Women Men Wristband https://www.amazon.com/dp/B08Q32886S/ref=cm_sw_r_cp_api_glt_i_N4YP8QT0TXPR7P87KHQC?psc=1
I had the same problem with the original band. I like these nylon velcro style bands. No itching, inexpensive, and I can swap them out to wash them.
Swhatty Stretchy Nylon Solo Loop Bands Compatible with Apple Watch 41mm 40mm 38mm, Adjustable Braided Sport Elastics Women Men Strap for iWatch Series 7 6 5 4 3 2 1 SE (Black, Rose pink, Cream) https://www.amazon.com/dp/B093H47MGW/ref=cm_sw_r_cp_api_glt_i_HN5CX2PD4YXDM6C9ZWTQ
I have heard a lot of people suggest CompressionZ brand of waist-high compression leggings. They can be purchased on Amazon.
I used to wear knee high compression socks exclusively but waist high is what makes the difference.
Here is the link for the socks I bought in the States.
I just purchased the Old Navy brand PowerPress leggings on their website here in the States, but they have a site for Canada shoppers.
Here's a link that goes directly to the PowerPress leggings on the Canada site m
No, but I make my own salt pills which is so much cheaper, and you don't taste them. I use this simple filler since others get jammed up with the salt:
https://www.etsy.com/listing/1058600908/quik-pill-supplement-filling-tray-made
And these capsules since they're already separated so it's much faster:
PurecapsUSA – Empty Clear Gelatin... https://www.amazon.com/dp/B07GNTYKB6?ref=ppx_pop_mob_ap_share
00 capsules hold just under 1 gram each, and I take them two at a time 4 times a day with around 16-24 oz water. Then I put as much salt on my food as I like.
I hope that helps!
I just switched all my light bulbs with these Himalayan Salt Bulbs and my light sensitivity is so much better now.
(http://Himalayan Glow W1651B-4PK Patent Design Himalayan Salt lamp, 4 Pack, LED Light Bulbs https://www.amazon.com/dp/B08KBTB6LS/ref=cm_sw_r_apan_glt_i_KHM2FMDF7420B7RC05B0)
I had a cutting edge POTS doctor pop in when I was seeing my neurologist. She said that midriff compression is more effective than leg compression for POTS owing to the large number of blood vessels in the abdomen. Give something like these a try.
I also bought a real corset.
Unfortunately, I don't know. I know about the website because I was coming off of Klonopin and my psych nurse refused to help me because she believed I couldn't be dependent on it after being on it every day for a year. Baclofen, a prescription med for muscle spasms, can help with withdrawal symptoms, but doctors don't prescribe it for that, so in desperation I took the risk. The pills were in legitimate packaging and when I look them up, they matched. The pills made me sleepy as Baclofen would.
Also decided to get tretinoin for my new stretch marks (caused by my meds causing extremely rapid weight gain) since my doctor refused to prescribe it because I'm "overmedicated". Unfortunately, I have trouble keeping up with taking it and it generally takes a few months to see results, so I can't say if it's real or fake. However, a side effect is pimples (it's main use is severe acne, it's known to get worse before it gets better), and now I have pimples after months of clear skin lol. Many people get tretinoin from them. I also have heard of people who get inhalers from them.
They have over 14,000 reviews on TrustPilot and a score of 4.8: https://www.trustpilot.com/review/alldaychemist.com
They don't have any controlled substances (understandable), but otherwise that site is a lifesaver for so many people.
I've tried several over the years. Coconut water is a good one, but it was a lot of hassle buying the cans. Currently I'm using one called Keto K1000 which has been working well for me.
I make my own salt pills which is so much cheaper than buying tablets and stuff. I use this simple filler since others get jammed up with the salt:
https://www.etsy.com/listing/1058600908/quik-pill-supplement-filling-tray-made
And these capsules since they're already separated so it's much faster:
PurecapsUSA – Empty Clear Gelatin... https://www.amazon.com/dp/B07GNTYKB6?ref=ppx_pop_mob_ap_share
00 capsules hold about 1 gram each, and I take them two at a time 4 times a day with around 16-24 oz water. Then I put as much salt on my food as I like.
I hope that helps!
In my experience, the listing for the compression socks you want to purchase will provide measurements that include any combination of shoe size, calf circumference, ankle circumference, or arch circumference. The bulk of the pressure is at the ankle and the top of the foot to encourage blood flow out of the foot. The calf is a bit more forgiving, but it can still be a problem. There are plus size compression socks that account for wider calves if other compression socks are too tight in the leg for you.
Some examples:
https://smile.amazon.com/gp/product/B08CK9285R/
Third image down has a size chart for ankle circumference and shoe size.
https://smile.amazon.com/Compression-Largefor-Circulation-Support-Recovery/dp/B09CM2DXN8/
The last image in this listing for plus sized compression socks is a size charge for ankle diameter, shoe size, and calf diameter.
I bought this one for my parents to keep after we all had covid this year. I have another one by the same brand that has worked well for years. My PCP uses the same one also!
https://www.amazon.com/Zacurate-Fingertip-Oximeter-Saturation-Batteries/dp/B07PQ8WTC4/ref=mp_s_a_1_3
If you're able to sit up, what works for me is the [DeskCycle 2 Under Desk Bike Pedal Exerciser with Adjustable Leg - Mini Exercise Bike Desk Cycle, Leg Exerciser for Physical Therapy & Desk Exercise https://www.amazon.com/dp/B07BDRFMZK/ref=cm_sw_r_apan_glt_fabc_N4HN4BSF5MA3C6NK38KH?_encoding=UTF8&psc=1
So, it depends on what I am doing/where I am going.
For just running quick errands where I will only be out for an hour or two, I generally do not carry a purse or a bag, and I only keep my little wallet change purse thing on me. For these times, I keep a little pill container that is small enough to keep in my wallet/change purse. These are the ones I carry. They do make that shaky pill container noise that drives me crazy, so I just fold up a bit of tissue and put in there to keep them from shaking.
For days that I will be out of the house for a while, like days I have class all day, I keep a Vera Bradley pill case (this one). It looks nice and not obviously a pill case, but has plenty of room to fit what I need for the day. I know this one is expensive though. I bought mine at an outlet for like $10. I just looked it up on amazon, and if you search "zipper pill case" you can find some for $10. It just makes it a little less obvious that it is a pill case. It also keeps the case from accidentally popping open in your bag.
>It makes me wonder what my blood pressure is doing daily..
I bought one of these. It's a little pricey, yeah. You can set it to record every 30 minutes, hour, etc., all night long and also all day long. It produces a night report to show the doctor of what your blood pressure is doing each day.
https://www.amazon.com/gp/product/B07G9Z76MM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
It can always be resold on Ebay or something later to recover most of the money after you're done.
These acupressure canes are amazing:
LiBa Trigger Point Fibromyalgia Pain Relief Cane Therapy https://www.amazon.com/dp/B07P5PFFMZ/
We have a few around the house used daily, and one in the RV.
I cannot tolerate massage or most chiropractic (EDS and sensory issues) so these are a marvelous tool.
I spray Method Daily Shower Spray every time I’m done in the shower. It helps to keep the shower free of soap scum and dirt in between deep cleanings so I don’t have to scrub it down as often. No scrubbing or wiping needed - just spray it after you’re done showering.
I'm not sure how to fix the issue, but you can buy antiperspirant hand cream. People use it to enhance their grip in pole -- I got it for yoga and it works really well. This kind of thing.
Hand sanitizer works too, but you have to apply it more frequently.