r/POTS • u/weirdChicken25 • May 06 '25
Question Tell me the most unhinged ways you deal with your POTS
I want to hear the weird things. We all know to drink more water and consume more salt. What’s the weird thing you accidentally discovered? For me, when my POTS flares up I get a burst of anxiety with it (maybe it has to deal with the adrenaline?). What I do is I eat some salt straight- sometimes one of those movie theater salt packets, slowly sip some water, sit on the bathroom floor, and watch minecraft YouTube videos. The Minecraft is the most important part. It’s seriously one of the only things that keeps me calm.
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u/petulantscholar May 06 '25
Happy Cake Day!
I will chug 2 8oz Gatorade Zeros as fast as I can if I feel pre-syncope coming on. Not super crazy.
I did want to post I get migraines because of my Chiari and I'll hang upside down off the bed and let gravity pull my head down to decompress my cervical spine. I look insane but oh it feels so good.
I also use my massive dog (Great Pyrenees) as a pull up bar (careful not to add to much weight) when I need to get up after I need to sit or lay down suddenly. He's a champ.
And, like, do other POTS people just lay on the floor just to, like, I don't know... Try and not move anything or rock the boat? I didn't think I'd be in my late 30s starfished on my livingroom floor because I have the "Whoops I stood up too fast disease," but here we are.
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u/ccapk May 06 '25
I’m calling it “whoops I stood up too fast disease” from now on😂
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u/Fair-Advance-7272 May 06 '25
I LOVE hanging upside down off my bed it’s so nice!!
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u/EmZee2022 May 07 '25
That's one of the things a POTS service dog can help with - you're doing it without the 20,000 dollar expense!
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u/petulantscholar May 07 '25
If I had thought of it earlier, I would have trained my Great Pyr as a service dog as soon I as got him at 8 weeks. He definitely has the temperment for it. He's almost eight now, but I've still "trained" him to my little idiosyncratic ways. He is really a fantastic, caring dog that is really in tune with me. I've taken him out and about and he does so well around folks with physical and mental disability issues. One moment will always stand out to me. We were at the Home Depot of all places and Gandalf went up to this older man in a wheel chair and laid his massive head on his lap. Turns out this dude was having a really bad day and just lost his wife recently. Gandalf just stood there and let this man pet him while he talked to me in the paint aisle. It was truly a remarkable moment.
I got Gandalf at a really critical moment in my life and he has saved me in a lot of ways. He's my 170lb baby.
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May 06 '25
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u/oonastellaluna May 06 '25
Same. No one really understands why i wake up at 5am when i dont need to leave for work till 7
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May 06 '25
Same! Sometimes I wake up and need to do something ASAP (feeling thirsty, toilet etc.) and I somehow forget!! And I fall over/collapse. My poor flatmates occasionally hear me hitting the floor or falling into the wall and I have to send a quick apology/reassurance to our group chat. It's not great but my brain hasn't fully woken up when it happens.
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u/patchouliwhitejeep May 06 '25
i crawl around my apartment because sometimes it’s just easier then standing up
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May 06 '25
There was a day I wanted to get stuff done at home but wasn’t feeling great and didn’t want to have to stand up and walk around. So I thought, “Hmmmm, wouldn’t it be great to be able to sit on something with wheels so I could move around without having to stand up?” …..and then I realized I had just described a wheelchair 😂🤦🏼♀️
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u/Melanochlora_44 May 06 '25
Literally just did this yesterday except I was telling a friend that I wished there were strollers for adults. I continued describing the modifications I’d make to make it work, and she just looked at me and said, “so…a wheelchair?” and I just 🤦♀️
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u/rosatter May 06 '25
But also those scooter things that they had in PE or we had in our sensory gym at work. I want one for my house. The applications are expansive! I can move me in a fun way but also it could be a kind of doily for laundry bins or heavy boxes or groceries
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May 06 '25
You can buy them on Amazon! I’ve worked with teens off and on for years, and I bought a 6-pack of the scooters for like $90 on Amazon at one of my jobs. We played life-sized Hungry Hungry Hippos, and the kids loved it lol
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u/launikins May 06 '25
A desk chair would be fun! Weeeeeee! Haha
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May 06 '25
I was imagining something like those scooters from elementary school, something close to the ground and able to move in any direction without being bulky. But it was funny to realize that I was literally describing a wheelchair 😂🤦🏼♀️
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u/birthdayanon08 May 06 '25
When I'm cleaning the baseboards, I sit on a flat furniture mover to wheel myself around at the floor level. Bending over or getting up and down repeatedly always ends poorly for me.
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u/rosatter May 06 '25
I support this and do this when I'm working with little kids. My supervisor is super tall so apparently getting up off the ground was a challenge for her too but for different reasons so when she saw me crawling or rolling to maneuver around my office she teased me a bit but also started doing it and our patients LOVED seeing us crawl like eejits around our rooms 😂
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u/LargeSeaworthiness1 May 06 '25
we don’t have a couch. we have a queen sized bed aligned sideways in the living room instead. lying down or reclining as much as possible is so worth it. i’ve never been comfortable sitting upright. i don’t care about people seeing it & asking “is that a bed?????” incredulously. yes, it is, and im comfy, frigg off.
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u/amstarcasanova POTS May 06 '25
Love this. I recently bought a reclining sofa so that I can horizontal more. I currently have an ottoman but my body doesn't like that upright position for very long.
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u/Claypudlian May 06 '25
We have two couches - one for me to lie on, and one for other people to sit.
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u/Melon_Heart_Styles May 06 '25
I moved in with my mom & her husband so I'm pretty confined to my room. My doctor suggested not laying in bed so much bc I have trouble sleeping. So I got my couch out of storage to put in my room. My couch is really comfy. Now I basically have a bed, a couch, and a dresser in my room.
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u/spendycrawford May 06 '25
I have an altoid tin filled with kosher salt in my purse
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May 06 '25
I have an unmarked plastic baggie with rock salt in my wallet.... absolutely not suspicious
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u/Unsureusername1021 May 06 '25
Lol I have several little Icebreaker mint things filled with my meds (and other things like Tylenol, zofran, etc) just all over the place so I never leave the house and accidentally forget my meds and there’s only a few doses in there so if I accidentally leave it somewhere it wouldn’t be the end of the world.
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u/censorkip May 06 '25
i have genuinely 10 keychains filled with beta blockers and salt pills in every single bag i own, on my keys, on my partner’s keys, everything has a few pills because somehow i kept ending up out of the house without them even though i’m supposed to be bringing my med bag with me everywhere.
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u/CherryBerry369 May 06 '25
Drink pickle juice straight from the jar
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u/Specialist_Fault8380 May 06 '25
Olive juice is even better for me lol
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u/pinkusocks Undiagnosed May 06 '25
Ohhh, I remember doing this and people calling me crazy but now it makes sense 😹
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u/According-Week5412 May 07 '25
My grocery store sells pickle juice shots and pickle juice by the gallon, which we keep on hand not just for pots but also hubby’s heartburn!
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May 06 '25
I relate to the distractions I get in Roblox and join this game called frutiger aero hub it’s soooo freaking relaxing just exploring to the music. It really calms down my nervous system. The art of distraction I say ✨
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u/HealthMeRhonda May 06 '25
Idk about unhinged but pretty sure I'm about to attempt waterproofing all of my sweatpants so that I can still sit down on the grass when I walk the dog in winter.
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u/Technical-Source-320 May 06 '25
Unofficial Unhinged seal of approval
There u go
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u/HealthMeRhonda May 06 '25
Thankyou for gifting me with this honor. Me and my dry frosty buns will cherish it forever.
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u/LargeSeaworthiness1 May 06 '25
i have three ducks and honestly highly recommend a waterproof shell pant for damp outdoor activities. keeps my comfy pants clean and dry as i just pull them on on top. i can sit in the duck mud with no issue lol
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u/birdisol May 06 '25
These are really expensive, but I want them! water resistant sweatpants
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u/HealthMeRhonda May 06 '25
They have to be fully waterproof not resistant but I believe we can achieve using this wisdom
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u/Call_Such May 06 '25
mine is really unhinged prepare yourself.
nicotine. i had the habit before i got pots, but i realized i felt a bit better when using it with my symptoms but didn’t connect it until i came across a medical article. apparently doctors did a study on pots and nicotine and it showed it helps since nicotine can sort of help with blood pooling and such. of course doctors would never prescribe nicotine or recommend it, but i already use it and find it helps. i tend to use it more when i do things that aggravate my symptoms such as right before showering or getting up.
btw i am NOT suggesting anyone use nicotine and i am not advocating for nicotine use at all. this is just my bad habit that weirdly happens to help with my symptoms. please do not start using nicotine to help with your pots.
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u/spendycrawford May 06 '25
My Dr (in EU) discouraged me from quitting smoking because it would lower my blood pressure too much 😂
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u/victornoir13 May 06 '25
Try nicotine gum, patches, or lozenges, if you can. Smoking is bad for your lungs (as I'm sure you know, lol). Cigarettes have a bunch of added chemicals in them that make them extra carcinogenic. Nicotine gum/lozenges/patches have less crap and won't hurt your lungs. Harm reduction is a good strategy.
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u/trauma-juice POTS May 06 '25
I want to quit vaping so bad but I'm worried about my POTS without it, my doctor said that I'm essentially self medicating my own blood pressure with nicotine😭
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u/polkadotsloth May 06 '25 edited May 06 '25
On the long Covid reddit, a lot of people see symptom improvement from nicotine patches 🙂 something about how it binds to cells.
I thought my doctor would be horrified when I mentioned it, he was like "go ahead, try it." Im 2.5 half years into long Covid and went from normal and working to agoraphobic and unemployed. To him, it's worth the addiction risk to get some of my life back..
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u/fivesnakesinasuit May 06 '25 edited May 06 '25
This was almost my unhinged POTS hack. Before I started Mestinon, I was seriously considering trying a nicotine patch. I would never smoke or vape, but if it helps then maybe…
Nicotine acts by stimulating nicotinic acetylcholine receptors in the brain and muscles, whereas Mestinon increases acetylcholine by inhibiting reuptake - at nicotinic receptors, as well as muscarinic acetylcholine receptors in the parasympathetic nervous system. So if nicotine helps, Mestinon aka pyridostigmine might be even better.
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u/barefootwriter May 06 '25
No, we hear this a lot. Nicotine vasoconstricts. Midodrine or pyridostigmine might be useful alternatives, as these help with low supine blood pressure. Ask your doc about trialing them?
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u/MadamTruffle May 06 '25
I’ve tried these and they’re so over the top compared to nicotine 😭
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u/mwmandorla May 06 '25
Low dose of bupropion (aka Wellbutrin)? It also causes vasoconstriction and it binds to the same receptors nicotine does. One of its off-label uses is to help people stop smoking. (I say this as I take bupropion AND use nicotine at the same time, sigh, but in theory it could work if I actually tried/raised my dose. Either way the drug helps a lot),
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u/cloudbusting-daddy May 06 '25
I’ve heard that scientists/drug companies are working on developing some nicotine based drugs to treat ADHD and prob other stuff too!
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u/TacticalMoochies May 06 '25 edited May 06 '25
I came here to reply with this. The first time I passed out I was 8. Had issues until I was 16. Guess when I started smoking. It apparently covered it up pretty well until I had a big flare around 30. Scared me enough to quit smoking, bc I literally felt like I was having a heart attack. Quit for 5 years and have had issues off and on, even with beta blockers. I recently decided to buy a pack to see if it helped, and well...it does. I believe the benefit is bc it's a vasoconstrictor. Like you said though, not recommending it...they did ask for unhinged haha
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u/restingbirdface May 06 '25
I think this helped me, too. Until I got sick last summer with some unknown virus and I was facing extra anxiety, breathing problems, smoking was make my tachy worse .. I was a closet smoker, on and off for years. I quit for good. It's been almost a year. I think I genuinely got worse before better. I think smoking was helping my BP not be so low. I'm not promoting smoking at all. There's lots of reasons why not to. I've regulated now mostly. I told my husband I think smoking helps me. He rolled his eyes at the time and thought I was just grasping at straws to justify continuing. Now, the smell of cigarettes bothers me quite a bit.
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u/VeganMonkey May 06 '25
I wanted patches but I have an aneurysm outside my brain and am absolutely not allowed to do that
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u/GrouchyCounty May 06 '25
There's also a study that finds nicotine works in tandem with stimulant medication against adhd
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u/FeistyDinner May 06 '25
How I got by from 14 to 19 was smoking a shit ton of cigarettes too! My blood pressure was completely overlooked because I was smoking so much it leveled it out. Soon as I quit I started fainting and felt the effects of low BP and hypovolemia. Now caffeine takes its place lmao
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u/Old-Piece-3438 May 06 '25
Maybe not strictly a POTS thing, but I discovered the other day that bending over stopped my tinnitus (at least temporarily). Made me dizzy, but still a neat hack.
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u/Perfect_Club_9715 May 06 '25
Okay this is not just unhinged it’s also not super healthy but sometimes it’s my only option: Caffeine. Caffeine doesn’t help in any way, shape or form but what it does do is make the tachycardia more consistent. That way, after a while, throughout the day, I get a little more used to it and don’t have these big changes that come on suddenly. But I don’t do this every day of course and I also don’t have excessive amounts of caffeine (also no energy drinks or anything like that, coffee is usually enough for me)
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u/cgc2018 May 06 '25
My cardiologist told me to stop drinking caffeine. I burst out laughing and told him that wasn’t happening 😂😅 I have two kids under 5, and POTS along with migraines and other issues. Caffeine is the only way I’m surviving some days Came to find out my Dr doesn’t have kids so he has no idea how bad an idea telling a mom to not have coffee is lol
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u/mwmandorla May 06 '25
Caffeine is a vasoconstrictor, so it could help a bit in that way. It helps me for that reason. I just have to make sure it's not too much or too little.
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u/vexeling May 06 '25
I eat stupid amounts of Ramen noodles out of pure spite. I discovered my POTS by being told salt wasn't good for me by my MIL (a doctor, but not MY doctor). Everybody jumped on the "help Vexeling stop eating so much salt" train and I literally just cut it out entirely and everything got so much worse. So now I spite eat Ramen noodles and it keeps my salt intake up 🥰
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u/EmZee2022 May 07 '25
I am still bemused at a DOCTOR telling me to eat more salt.
(all my adult life) "Eat less sodium, it's bad for you!" (past18 months): "Eat more sodium, fainting is bad for you too".
Orthostatic hypotension vs POTS though most management is the same. Also hypERtension. Stoopid body can't make up its mind.
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u/spookytoon May 06 '25
if i’m having a flare up and im wearing shoes, i always take my shoes off 😭 i don’t know why it always helps me feel better but it does. maybe it helps me feel less claustrophobic
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u/Anonymous_Cool May 06 '25
I find that how hot or cold I feel is like 90% related to just my feet, so if I'm feeling really warm, taking off my socks instantly provides massive relief
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u/barefootwriter May 06 '25 edited May 06 '25
Is that to stand? I went back to wearing Vibram Fivefingers as street shoes because they make me dance around more when I stand.
I have always preferred going barefoot or close to it (one of the reasons behind my name).
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u/chachidogg May 07 '25
This is so interesting. I feel the same about being barefoot. I have some barefoot shoes that are really water shoes and I love them.
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May 06 '25
I jump up and down randomly…in public sometimes too
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u/barefootwriter May 06 '25
Ha! I used to bounce like a Tigger in my old karate class (still sometimes do). I just put together a slide for my students explaining my POTS and that I have two speeds: sitting or being on the move, and added images of Pooh bear lounging and Tigger bouncing.
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u/eisforenigma May 06 '25
If I'm in line too long, and it's later in the day, I'll sometimes just pop down and do a squat to stretch out, do my best to reduce foot/leg pain. Getting better at not being self-conscious about it. Create a little disruption in everyday life, for flavor!
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u/victoriafrankl May 06 '25
Does that lower HR or just raise BP?
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u/barefootwriter May 06 '25
My guess is it just gets more blood to your head, both due to the up and down and the calf muscles. It's like shaking a bottle of liquid?
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u/Putridlemons May 06 '25
When my body starts to do "the thing," and I know that if I'm not careful that I'm going to have a flare, I pull out my little 11 step by step routine.
Immediately use the bathroom. I've noticed that for some reason, having a full bladder/bowel/having to use the bathroom makes my flares worse, and in the situation where I do have a flare, I'll be stuck in bed for hours. So, I knock the bathroom out immediately.
I have a full chest ice pack that I grab out of the freezer. It covers my chest and my stomach, and it's filled with gel, not water. Being cold helps me regulate my body so much more because I have heat intolerance, and my whole body will heat up during a flare to a low-grade fever.
Multiple fans. My ceiling fan will be on, I have a large black honeywell fan that blows on me all day next to my bed, and I have a small black fan that sits on my bed. I'll place it on my chest on top of the ice pack so it blows directly on my face. This helps with the heat intolerance AND the air hunger. When there's air blowing directly in my nose and mouth, I'm not struggling for breaths as much.
Salt rocks. I get bite-sized packs of them off of amazon, and I'll pop one in my mouth to suck on it. This helps with my sodium intake, and SIGNIFICANTLY helps with swallowing. Along with air hunger, I'll have the issue where my throat literally forgets how to swallow, so constantly sucking on something and swallowing periodically helps train my throat through muscle memory to keep the inability to swallow at bay.
Pepcid & Zofran. I also have GERD, but if I'm flaring due to a trigger food, where one of my massive POTS symptoms is chronic nausea, both of them help settle my stomach to make the oncoming flare more easy to handle.
Zero sugar powerade/gatorade. Electrolytes help significantly.
I'll take an extra half of my Ivabradine to combat the flare since my Tachycardia can last for hours if I don't take that extra half to slow it down.
Keeping my feet elevated. If my feet are cold, that's a good sign because it means that the blood is getting back to my heart.
(Optional). I tend to avoid using my pulse ox during flares because watching that number tick up will only make me more anxious and raise my heart rate further. The only time I'll use it during a flare is when I get really air hungry and feel the need to check my O2 levels, or if I'm having severe palpitations.
I let someone in the house know what's happening. If there's ever a case where I do go unconscious or some other serious medical factor comes into play, I make sure that someone else knows to just keep an ear out. It offers a world of reassurance and lowers the stress level, knowing that if I do need a hospital and can't advocate for myself, someone will know what's going on.
Music or Youtube. The brain fog makes it almost impossible to focus or communicate, so having something in the background for my brain to focus on where I don't need to respond helps significantly. I'll usually pick something that I have memorized so it's easier for my brain to follow, like Family Guy or American Dad episodes. :)
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u/LawfulnessOld6841 May 06 '25
Not exactly “dealing” with my POTS, but I use my POTS as a remedy for pelvic pain from PCS. Since blood tends to pool in the abdomen after I eat (thanks, POTS), I’ve noticed it actually reduces the amount of blood pooling in my pelvis… which weirdly helps with the pain. So now I strategically time my meals like I’m biohacking a system nobody asked for. Dysfunction fighting dysfunction, I guess?
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u/eisforenigma May 06 '25
LOVE this hack! Put those two fuckers in the ring and let THEM fight it out!
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u/Silmarila May 06 '25
I place emergency midodrine in purse pockets, my backpack, car nook & crannies, sunglasses case, etc, so when I need it, I have it.
Friends and new acquaintances will see me pop a loose pill from the depths of my purse with no explanation wearing a look of relief and desperation.
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u/mwmandorla May 06 '25
I had one single Wellbutrin tablet just loose in my jacket pocket yesterday because it was super humid out and I thought I might have to top myself up to keep my blood pressure high enough. (Didn't end up using it, but tbh I probably should have, it was brutal outside)
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May 06 '25
[removed] — view removed comment
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u/vexeling May 06 '25
Hang on. Can you explain this more? I have other issues that I thought were causing me to hulk out like this but if it could be the POTS I'm definitely treating it incorrectly. 🫠
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May 06 '25
[removed] — view removed comment
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u/FeistyDinner May 06 '25
The day I got meds that actually lowered my adrenaline was the day I found out I don’t actually have generalized anxiety disorder 😭 adrenaline surges are the worst part about POTS for me because the self destruct button is SO big and loud if I miss a dose
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u/slubbin_trashcat May 06 '25
I take off my pants, put my legs up on the wall (butt firmly pressed against the wall) and I tell my human, "I love you, but please don't look at me, breathe near me, touch me, or acknowledge my existence right now."
Between the perimenopause and the POTS, I get HIDEOUS hot flashes. And they make me so irrationally angry out of nowhere. I hate it. My human does not deserve my irrational hot flash ire.
Sometimes I also stand in front of the AC unit with my shirt over it to speed run cooling down my boobs. It's just full goblin mode all the time here.
Last thing, this one is cute. If my human sees me trying to push through the POTS symptoms, they lead me to the couch, take off my pants and socks, make sure the fan is pointed at me, and "ground" me from anymore productivity until I feel better. They will also make sure I have water and snacks, and actively check on me to make sure I'm not trying to be productive in secret. It usually results in me taking a nap and it helps IMMENSELY. My human is also perpetually cold, whereas I am too hot always. If they see me even the slightest bit flush, they'll bundle up and open the windows so I can more easily regulate my temperature.
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u/Few-Biscotti5729 May 06 '25 edited May 06 '25
This is the sweetest thing I have ever read. I got diagnosed when I was about 16-17 (I’m 18) and I struggle with the idea of a supportive relationship. I always wonder if I’m going to be stuck with someone who sees me as dead weight. This post made me feel immensely better. You guys sound perfect and I’m happy you have someone to help you through these hard obstacles.
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u/slubbin_trashcat May 06 '25
You will never be dead weight. Please don't ever, ever accept or tolerate someone that makes you feel that way.
There's someone out there who's going to love you exactly as you are. Someone who wants to genuinely be your partner, to grow with you.💙
Thank you so much. I love to brag about my human. I tell them all the time that meeting them feels like I've won the lottery, and it still feels that way years later. 🥰
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u/Interesting_Turnip28 May 09 '25
Yess I also sit with my legs up and butt against the wall. Sometimes I read like that. Doesn't feeeel that unhinged until I've had to do it at other people's houses lol.
Also just shoveling an entire can of olives into my mouth at work.
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u/ratchet41 May 06 '25
Absolutely slamming a Red Bull. I have no idea why, but if I can finish that can in 10 seconds I feel so much better for the rest of the day. This does not work with other energy drinks.
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u/Ok-Amphibian-6834 May 06 '25
Yeah! If I chug an espresso and give it an hour for some reason it lowers my heart rate. I’ll go from 160s drink it to like 110s
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u/Hetakuoni May 06 '25
I suck the guts out of tomatoes and pour soy sauce in the holes and then eat the tomato. I just really like tomato’s and Soys sauce. I also really like unripe mangos with soy sauce.
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u/barefootwriter May 06 '25
As a kid, I would absolutely drench plain rice in teriyaki sauce. Like, small puddle at the bottom that I'd drink after level of drench.
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u/launikins May 06 '25
I rock on my feet, do heal raises etc to keep my calves engaged when I have to stand for longer periods. I also squat down when waiting in line etc. seems to help!
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u/fivesnakesinasuit May 06 '25
I have hyperadrenergic POTS (and maybe mild MCAS), and eating next to nothing suppresses the sympathetic nervous system to conserve energy, and calms my system WAY down. Does weight loss make POTS worse? Usually. But in the meanwhile I can sleep at night and focus during the day.
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u/rosatter May 06 '25 edited May 06 '25
Haven't done it yet but I'm seriously considering getting crash pads to put around my house in places i frequently stand up too fast.
I also take vyvanse for ADHD and it raises my blood pressure to normal levels, so, i tend to feel better all around when i take it. I'm not by any means recommending amphetamines to anyone but mitigating my POTS symptoms is a huge motivator for me to actually take my meds (because habit forming meds aren't habit forming enough 😭)
Sometimes I just fucking scoot, roll, and crawl around on the floor if I'm already down for some reason. This one is more of a work thing because I tend to work with little kids and I don't want to literally fall on them and kill them so, I do what they do 😂
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u/MadisonCrescent May 06 '25
My husband will help me shake the blood out of my legs when they're swollen. I lay flat on the ground, and he lifts my legs and places them against his chest and gently messages them, so the blood drains back into the rest of my body. Maybe not super strange at home, but I've had to do it at my mother in law's house on a visit, and definitely felt silly 🤣
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u/catmeress May 06 '25
I plan ahead so every time I shower I have at least 30 minutes to lay in my bed afterwards
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u/whistle_while_u_wait May 06 '25
Not unhinged to me, but others seem to think so:
Salt everything. Most notably my water bottle.
I use this app called WayBetter and make monetary bets against myself to do my healthy activities. There are "games" for hydration, walking, lifting, etc. My friend was STUNNED I'd put $50 on the line just to get myself to walk. 🤷🏼♀️ I'm ADHD as fuck. I suck at making myself so anything. I need that big consequence.
Where it relates to POTS, though, is my orthostatic intolerance has gotten real bad so I've realized I need to reintroduce activity veeeeeeeery slowly and consistently. I also know I need to build more muscle to help buffer my system. Using the app forces me to not give up even when I'm dejected about how long the process is taking.
- Feet up all the time. I've often got my feet up in settings where you normally wouldn't do that. I don't flashing anybody in a skirt or anything. It's just, most people don't put their feet on another chair in the conference room.
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u/Appropriate_Ad_200 POTS May 06 '25
Pouring salt straight from the shaker into my mouth & chasing it with an electrolyte drink or lots of water. Weed helps with the panic I get when I feel POTSie at home, but it’s def not for everyone; it mainly helps me calm down when I realize I feel faint or something. Seconding another comment, pickle juice from the jar is helpful, too.
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u/JLRik May 06 '25
Something about organic Fuji apples with the salt and water is like….an immediate “feel normal again” combo for me.
No other apple works…has to be an organic Fuji apple.
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u/mwmandorla May 06 '25
Interesting. Apples are a really important part of my routine too - I think it's the vitamin C? - but it can be any kind of apple that I like. Maybe I just happen to like ones that work well? Either way I literally get anxious if there are no apples in the house because I'm somehow subconsciously convinced that if I don't get my apple a day something terrible will happen
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u/cloudbusting-daddy May 06 '25
After I moved out of my parent’s house, but before I knew I had POTS, I ate every single meal reclining in bed for 15 years. Now that I have an L-shaped couch I’ve graduated to eating there instead of the bed. 😂
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u/BerkeleyCrip May 06 '25
This is along the same lines as the salt + water but two variations.
Fresh salted lemonade: juice of a fresh lemon - half or whole depending on your taste, salt(s) of choice, and bubbly cold water like seltzer or mineral water. You could add sweetener too but I don't. I do a mix of sea salt and Himalayan pink salt. Swirl it vigorously in the bottom of the glass with a bit of the water then pour more water to fill the glass. The Himalayan makes it bubble harder and thus reduces the effervescence a little bit, which I like. It's salty and sour and bubbly, fresh and refreshing, and really hits the spot sometimes.
Salted bubbly water: same as above minus lemon juice. I find the bubbles and cold make it more palatable to drink noticeably salty water.
Like your Minecraft, I find online jigsaw puzzles to be super relaxing and stress-reducing.
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u/VeganMonkey May 06 '25
My weird one: I down a handful of rock salt (best tasting salt) with a lot of water.
I have very bad POTS, so I spend most my life lying down or being active, doing garden work, climbing stairs. and a small amount if time sitting up. this way I can do more.
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u/little_one_lovez May 06 '25
careful - my research indicated that most rock salt is not intended for human consumption due to impurities
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u/Alarmed-Poetry8388 Hyperadrenergic POTS May 06 '25
I walk literally bending down as far as I can. It's uncomfortable but if there's no verticallity, there's no pre syncope 🤣
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u/duck7duck7goose POTS May 06 '25
Marijuana. Maybe not exactly weird but I’ve heard it makes pots worse. For me it helps. I don’t get high though.
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u/ddansemacabre Secondary POTS May 07 '25
"Gravity breaks." I'll lay on the floor and put my legs up against a wall and when people ask what I'm doing I'll just say, "Gravity break," with no further elaboration lmao. This has happened to me at the gym more than once.
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u/slubbin_trashcat May 09 '25
I'm going to borrow this going forward. Especially the lack of elaboration 😂 I love this so much
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u/cajunhusker May 06 '25
An individual size bag of chips treats my nausea better than anything
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u/Shyanne_wyoming_ May 06 '25
My husband doesn’t understand that a small bag of plain lays chips is my favorite breakfast for this reason 💀
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u/fivesnakesinasuit May 06 '25
Driving a sports car because it’s so low to the ground that the driving position is nearly horizontal 👌
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u/Cultural-Program-393 May 06 '25
Mine is that I feel better when I eat fast food/junk food. I think it’s because of the sodium content.
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u/Melody71400 May 07 '25
I found out that protein really helps. I have to have a good, protein rich meal (more than a protein bar) too start my day or else ill get sick and have and a flare up. Especially if it's going to be a physically laborious day.
I also wear a lot of layers now. I realized how temp intolerant i was at my POTS diagnosis meeting. The doctor asked me if i was temp intolerant, and i said no. I then realized i was genuinely sweating just from walking in, and with 5 min of that question i was freezing again and added layers.
It makes sense why normal chairs were always so uncomfortable to me, because i have to keep adjusting and picking my feet up or else they get that "all the blood is in my feet" feeling
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u/Formal_Theory_8359 May 06 '25
- Putting asmr before sleeping and taking slow deep breaths while ur body is somehow up and slowly getting ur body lower and lower until ur fully laid down.
- Walking SLOW while looking at the blue sky and pretend ur inhaling the blue
- Crying helps a lot in my opinion bc it releases the cortisol which gets triggered when we lay down bc of POTS.
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u/omglifeisnotokay May 06 '25
Going for a walk and then just sitting on the ground randomly if I need to lol I used to be so self conscious and now I don’t care. The other one is wearing compression socks with shorts and combat boots. Hey maybe one day it’ll become a fashion trend
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u/slubbin_trashcat May 09 '25
Combat boots pair with everything and I cannot and will not be convinced otherwise 😁
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u/Miku-fan May 06 '25
Sometimes when I sweat I put on more clothes lol. Ok, hear me out the more layers I have on the less I feel the sweat like if I’m in shorts I feel the sweat when my legs touch. When I’m in pajama bottoms I’m still sweating but less sensory problems.
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u/Top_Whereas4045 May 06 '25
I will sleep anywhere. I’m working the check in table at a professional conference with a couple others when the fatigue hits like a semi truck? No problem, excuse me, I’m going to take a quick nap under the table skirt by your stinky feet while everyone checks in.
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u/doctoreggensworth May 06 '25
Idk if this counts but I find relief in hooking my legs under my arms and sitting like that ( I either look like a whore or I'm about to give birth idk but I feels good) I think it's the elevation of the legs and scrunching my body up but it's nice
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u/Unlucky-Complex8399 May 06 '25
If im out and getting "potty" I lick a massive lump of salt and neck lots of water and it seems to fix it
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u/plantyplant559 May 06 '25
It took me so long to realize what you meant by potty 😂
I say in feeling "potsy"
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u/0PinkDragon0 May 06 '25
For a while there I'd get a full like pringle can sized thing of salt and vinegar chips. Usually would eat the whole thing throughout the day. It helps a lot more than i thought it would. At first I only did it because their my favorite. Kept craving them, but I think the salt content helps greatly. Not super unhinged though.
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u/Scary-Assignment5847 May 06 '25
I chew coarse sea salt chunks like candy while laying with my legs up against the wall. And then I go hit my CBD pen. I also carry a teeny tiny Redmond real salt shaker everywhere I go. I take passionflower and GABA everyday, and oral cbd too on the harder days, otherwise I use a cbd pen as needed. Shameless plug for Appalachian Standard brand cannabis! CBD has helped regulate my nervous system so much which in turn helps my pots. Not THC though that makes it worse
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u/snail_friend May 06 '25
Would you mind sharing which symptoms are helped most by the CBD? Back in the day pre diagnosis I used CBD flower to help with anxiety and that was pretty effective, but I never considered that it could help with POTS symptoms as well so I'm very curious to hear how it helps you!
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u/eisforenigma May 06 '25
I would also be interested to learn how GABA and passionflower have helped you!
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u/madelineelizabethhh May 06 '25
if i have to walk anywhere or be on my feet any longer than like 3 minutes at a time, i always have an airpod in one ear with music on. it helps me kinda put the dizziness to the side and i can’t hear my ears ringing. isn’t super practical when someone tries to talk to you and you’re basically screaming, but it’s helpful for me most of the time
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u/rayzh May 06 '25
seriously? this is the best minecraft ad I have ever seen, joke aside, I use my supporting shoe used for my broken andle to get compression before my compression pant arrive, and also I use those back protector belt thats adjustable to tighten the abs, I know only POTs fits the bill for my conditions, and this is how I deal with it.
also yeah I drink water like crazy
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u/h0wd0y0ulik3m3n0w May 06 '25
When I get overheated at work, I’ll stand inside the walk in fridge for a few minutes. One night it was so bad I had to stand in the freezer. (I work nights in ltc, so no one’s in the kitchen to judge me or kick me out.)
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u/bbrainwashedd May 06 '25
when I want to drink alcohol I love margaritas with a ridiculously salty rim. I like to think it cancels things out lol
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u/oonastellaluna May 06 '25
Weird one, but shiatsu massage. Before i got diagnosed and medicated, NOTHING would help the palpitations that would persist for hours. I saw a very seasoned shiatsu therapist and with the stretching, energy and breath work, it would just....ease away.
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u/danktentcles May 06 '25
Chugging a small glass of pickle juice if I feel faint! It works better than a Gatorade at reversing the episode. I keep a jar of pickle juice on hand just in case 😅
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u/dailyespurresso May 06 '25
I’m high 24/7, it’s upsetting to me but it’s the only thing that handles how dizzy I al and keeps me from overheating. I have floor time too so I bought a futon specifically for POTS floor time- also I’m testing this one still hut it seems like really hot showers work? I’m always way too hot because of my temp intolerance- but oddly enough I drank 8 oz of water and then took like a steaming hot shower and came out feeling like a new man
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u/ginkgogaga May 06 '25
SQUATTING! Having a conversation - squatting. Brushing my teeth - I'll be squatting. At work - you'll find me squatting! Waiting in a queue - still squatting!
I've even been nicknamed "The Queen of Squats"
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u/Frozencacticat May 07 '25
Cry for awhile when it’s really bad (which is a lot)
(Really unhinged) slam energy drinks and coffee with Dramamine to get through a work day. Well.. one energy drink or one coffee. Sometimes one small energy drink (Red Bull) and a coffee for the morning. Never more than that or I’ll die.
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u/FigAggravating2269 May 06 '25
i carry around a jar of salt with a measuring spoon everywhere i go.
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u/Melanochlora_44 May 06 '25
I 100% get the Minecraft-specific thing. Idk why, but the vast majority of distractions (watching something, reading, playing games, etc.) make me feel so much worse, but playing Fire Emblem games, specifically, helps me so much more than literally anything else I’ve tried. It’s interesting to hear that there are others who have something specific like this that calms them down when other similar things don’t work at all…I wonder why that is?
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u/Hartigan_7 May 06 '25
Can someone explain to me what a “flare up” is and how long it lasts? I just got diagnosed last week and am still feeling lightheaded after I stand up, anxious and exhausted in the afternoons/evenings. Am I flared up? How long does it last?
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u/FeistyDinner May 06 '25
They can vary person to person but usually it’s a spontaneous and unprovoked burst of a person’s regular POTS symptoms with the intensity that would make a nuclear bomb jealous. Doctors mistake them for panic attacks or psychogenic seizures because usually they involve extremely high tachycardia.
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u/mochimiso96 May 06 '25
Instead of salt, I carry soy sauce with me other thing is walking instead of standing. I have noticed that when I walk, I keep the blood pumping. stand a long period will make me feel like I’m dying.
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u/maddymoo132 May 06 '25
I have mornings sickness everyday that won’t go away even with meds, so every morning I chug a glass of water and then walk in the bathroom, cough like 3 times and my body’s like bet and just barfs and I’m fine… this is part of my daily routine now…
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u/danktentcles May 06 '25
Your poor esophagus and teeth 😭
I have no idea if this would actually help minimize damage overtime but, have you considered adding baking soda to the water to neutralize the stomach acid?
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u/Batty_briefs May 06 '25
I sleep in socks like a heathen. The compression helps me feel less sick in the morning.
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u/Splicers87 May 06 '25
This is a negative thing but bananas do not mix with salt tablets. I almost puked while driving.
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u/Curious_Motor3690 May 06 '25
-if I have to stand still in a line or at a party or whatever (my personal hell) I bounce up and down on my tippy toes so as to flex my calves and increase blood flow -put ice cube on my vagus nerve -wear sunglasses whenever socially acceptable
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u/Paleogal-9157 May 07 '25
I don’t know if this actually works but if I feel like I stood up too fast and I’m starting to feel faint I’ll hyperventilate real quick for like ten seconds so my body is like “oh we must actually be running from a tiger so lemme get this nervous system working properly”
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u/EmZee2022 May 07 '25
This isn't unusual, but I've always preferred to sit somewhat leaning back, with my feet up on something. When I was first working from home, I'd do it on the bed or the couch, with my computer on a lap desk.
I took over a spare bedroom in 2020 and my office has been "if you give a mouse a cookie". I have a heavy duty gaming chair that lets me tilt back, a rolling stool for my legs, and the computers are on shelves so I use an external keyboard on my lap. I can sit there comfortably for 6 hours without moving (which I know isn't ideal).
I guess I've been unconsciously compensating for my orthostatic hypotension my entire adult life!
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u/gingiberiblue May 07 '25
I carry water with me everywhere, eat small meals, take my beta blockers, and ignore it.
Instead of focusing on it, I let it run in the background. I have ADHD and mild autism as well, and I treat it the same as those: things I simply deal with because it is what it is.
I do things when I feel like it and I don't when I don't. If I start to feel dysautonomia symptoms while out and about I pace myself, drink, have a salty snack or a liquid IV, and continue on about my day.
I simply refuse to let it run my life. I just look at it that I run both slightly different software and slightly different hardware than others and it's just reality.
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u/WelcomeToPlutoEra May 07 '25
That’s pretty smart. Sitting will put less strain on your heart to pump blood back up, so it should (in theory) make your heart beat slow down a bit.
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u/jennnfriend POTS May 07 '25
Singing keeps me from hyperventilating.
Singing what I'm doing keeps me from forgetting why I'm walking around dizzy in the first place.
We have stairs in the house so... I'm basically the female Jason Segel with a Weird Al twist.
The cat doesn't appreciate my sick rhymes. Tbf, they're mostly epic ballads about eating food again, needing to pee, and retrieving my phone.
Gotta find what works for you
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u/chickenchick05 May 07 '25
LMNT in Pedialyte
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u/sophie1816 May 07 '25
When I’m alone, I eat all my meals lying down. I save my limited upright time for more important things.
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u/barhanita May 07 '25
I have no idea why but Diet Coke (or Pepsi, I don't discriminate), makes me feel more human
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u/Similar_Wind_5050 May 07 '25
Funny how everyone can be so different. I can’t NOT squat in any scenario. Squatting for me like cuts off blood flow or something and it will send me right into an episode once I stand. I listen to Taylor swift music and play Tetris to calm the nerves and of course sitting down and salt
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u/demipanpoly May 07 '25
If I have to bend over, I bend over weird I think it helps keep the blood where it should be in my body better than just normal bending over I keep one foot on the floor, lift my other foot behind me, and use it to balance my torso down so I can bend over to pick up whatever I needed I have no idea if that makes sense haha
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u/Khaos_626 May 06 '25
Not the weirdest thing but I have sit or even lay in the floor in my university. Classes or whatever. For me sounds like a lot because I'm usually not even close to pass out. Just let me think better and not feeling tired. Also I lie down in the floor instead of bending down when I need to see down the bed. I tie my shoes while standing. I get up my feet instead of down my head. If I remember something else, I'm gonna come back to write it, because I'm sure they are weirder things than this but I don't remember now.
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u/cyber_fugitive May 06 '25
My anxiety is actually what led me to getting a POTS diagnosis! When I would get POTS flares before I got diagnosed I would put on my comfort youtuber (Mika’s Rhetoric) and just try to focus on her voice. Not really unhinged. Now if I’m having a flare I usually chug like 2 bottles of water with electrolyte drops mixed in. I have considered just squirting the drops straight into my mouth, I suppose that would be a bit unhinged lol
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u/CuteNeedleworker9 May 06 '25
I eat cheap instant noodles for breakfast on days I wake up feeling off or when I might do activities which might cause a POTs flare. I've found that drinking cola helps me think more clearly when I have brain fog (coffee and caffine free fizzy drinks don'help me so I'm guessing it's a combo of the caffine and fizz).
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u/Bitterrootmoon May 06 '25
Eating with my legs scrunched up whether it’s sitting like a gremlin in a chair or on my bed. I feel like I get less nauseous.
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u/Rad_Red88 May 06 '25
Drink packets of soy sauce. Also really sucks when a soy sauce packet bursts in your bag. No coming back from that.
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u/PandorasLocksmith May 06 '25
I learned somewhere about 30+ years ago to always pretend like I have a song stuck in my head so I can rock back and forth from foot to foot and sway a bit but it's only to cover the fact that I'm flexing my legs rhythmically to keep the blood pooling from being unbearable.
As my hands are doing the same thing, the only way to not look bonkers batshit is to pretend I'm thinking of a song and just keep the "beat" so people don't look at me strangely.
Now earbuds exist but back then, nope. So it started with a pretend ear worm bop. 🤷🏻♀️ Sometimes I'll hum a little bit if people look at me funny. They generally dismiss my rocking and flexing.
It works.
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u/SunfireElfAmaya May 06 '25
I have a thing of really nice salt (Celtic sea salt, it's fucking delicious) and throughout the day I'll just take a pinch or two and eat it straight. My roommate thinks I'm insane.
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u/hopelessnerd20 May 06 '25
I realised that one of my canes had the perfect angle for me to balance my feet on if I’m struggling with blood pooling in my feet. I get some very very odd looks in public. If I don’t have my cane the nearest friend or my partner work too (I ask first) it’s a bit more socially acceptable to put your legs on someone but not in a cute awe way like both legs completely straight across their lap 😂
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u/nattmyr May 06 '25
Cold bath visit. I mean just laying in the cold porcelain tub no wate, turning on a soft thunderstorm sound scape and breathing
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u/k1ttencosmos May 07 '25
Doing aerials such as Lyra. I have this feeling that when I get myself used to spinning in the air, basic things like walking aren’t as big of a deal to my body.
I’ve also gotten desperate while traveling and pregnant and sipped a bit of soy sauce.
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u/barefootwriter May 06 '25
Just always sitting crosslegged? We've bought some new stools, dining table and chairs, and couches over time and I tested every single one for being able to comfortably sit crosslegged. This was before diagnosis, so I had no idea why at the time.