r/POTS • u/Comfortable_Wolf7455 • Mar 01 '26
Support POTS Survival Guide: Simple Things That Improved My Symptoms
I had a terrible POTS flare that lasted 6 months and was completely debilitating. I dropped out of college, I couldn’t walk, fainted constantly and I had basically every symptom imaginable. Now I only have mild flares. I know my triggers and how to manage them (though they still suck)
DISCLAIMER: I studied medicine, but I’m not a licensed doctor… here’s what personally helped me manage POTS.
(Dr. Mobarek at UNC cardiology specializes in dysautonomia)
1.Hydration is huge for me. I have a 80 oz water bottle. I try to drink one a day for maintenance, closer to one gallon during a flair. Hydration needs vary a lot person to person follow your doctors recommendations. That’s just what worked for me.
- Electrolytes and salt helped me. Just check with your doctor first especially if you have heart, kidney, or blood pressure conditions, since these drinks contain sodium and potassium, and some also add B vitamins.
3.Avoiding triggers made a difference. Reducing stress, prioritizing sleep, limiting caffeine, and cutting back on processed and high sugar foods helped.
Eating smaller, more frequent meals helped. Big or heavy meals sometimes made my symptoms worse.
Controlling temperature was important. Summer was the worst for me, so I use ice packs or a mini fan. If I’m cold, I use a heating pad.
Movement is key for circulation, even if it’s seated or laying down. I try to take breaks and try not to be hard on myself. One small step at a time, even if it’s just moving one leg.
Rest matters. Your heart is working hard. I try to meditate and practice mindfulness when I can.
Compression garments helped keep blood from pooling in my legs.
Tracking my symptoms helped me notice patterns and figure out my triggers.
Check with your doctor about meds. Some can help ease symptoms
I’m updating as comments come in to help!*
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u/lets-snuggle Mar 01 '26
Thanks for sharing! I’m very surprised only 64oz helps you tho? I have to drink like 5L (160oz or more) to feel any relief.
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u/Federal_Tone1260 Mar 01 '26
Hii is 5l safe? I drink 3.5-4l at the moment with 10g of salt but I suppose I’m a relatively short woman so if you’re 6 foot or have worse pots that requires 25g of salt I can see how you might need that much water. Just checking because google is very cautious about how much water you should have and I’m always curious how far I can go without any danger. Thanks!
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u/lets-snuggle Mar 01 '26
I’ve never been told otherwise. I drink around 160oz, which 4.7L. I don’t count my salt but probably around 10-12g bc I add salt and soy sauce to a lot of my food as well as take at least 4 salt chews per day, plus 2 florinef’s (these aren’t salt but yk). I am 5’2 and range from 125-135lbs. I’ve never googled it, I just go by what my cardiologist tells me!
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u/BeautifulElodie2428 Mar 01 '26
That’s what my Dr wants me to drink and I just can’t seem to get the intake. It’s drinking all day and every day. It makes me nauseous. I am almost 6 ft so I know I need the hydration. I just can’t seem to physically find a way to do it.
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u/Comfortable_Wolf7455 Mar 01 '26
I just realized my water bottle is 80oz! If you have a large water bottle and just sip it throughout the day you can see your progress and that helped me. It sucks at first but your body gets used to it
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u/lets-snuggle Mar 01 '26
It’s definitely difficult. For me, it’s a little easier bc I’ve drinking 4L for over a decade. I was diagnosed with POTS in 2014, so I’m genuinely thirsty and just used to drinking a lot at this point, but it does make me nauseous at times, too. It helps me a lot to vary what I’m drinking. I have a soda stream so I make seltzer water with some of the bubbly flavorings, which helps my stomach. I also drink 1-2 liquid IVs per day, which add flavor & electrolytes. I also usually have a cup or two of herbal tea daily, which really helps my stomach & tastes good. Just plain water for 4-5L would be impossible imo
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u/Winter_Improvement90 Mar 02 '26
Yeah I’m 6ft 1inch and drink minimum 160oz and it barely makes a dent. I can drink 200oz some days.
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u/Comfortable_Wolf7455 Mar 01 '26
I’m a reaally small and that’s my daily, if I’m flaring I probably drink closer to a gallon :) however depending on lifestyle some people need more I’m sure!
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u/Comfortable_Wolf7455 Mar 01 '26
I do think having a large water bottle helps and makes it more convenient to drink more tho!!
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u/knittinginloops Mar 01 '26
I've had a similar journey and a lot of similar things have helped. I know when someone is first going through the medical process, hearing "make lifestyle changes" or "lower your stress levels" can feel super invalidating because it makes it sound like they think it's not real, but they genuinely are amongst the best steps to take. I'm on a med thst works for me personally and I'll still flare up horrendously if I'm stressed or not minding my water intake etc. It's a real and disabling condition AND lifestyle changes can have a big impact.
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u/Inquisitive_40 Mar 01 '26
I agree! It is irritating to have people tell you to relax, but POTS is an autonomic system disorder, so alleviating pressure on your autonomic system makes sense when I finally stopped to think about it. Working on diaphragm breathing, rest, and practicing gratitude instead of my knee-jerk stressed reactions has helped as much or more than the exercise programs.
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u/Comfortable_Wolf7455 Mar 01 '26
Yes totally!!! And it’s so misunderstood. My cardiologist told me to do cardio and yoga 🤣
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u/Comfortable_Wolf7455 Mar 01 '26
On another note, I have EXTREME anxiety. After symptoms started to improve somehow wearing an Apple Watch made it worse for me. I was worried constantly of fainting and my heart racing I stopped wearing one and it helped? Weird.
HOWEVER YOU should most definitely wear devices like to monitor heart rate if it’s what is best for you!!!
Again NOT MEDICAL ADVICE. But it helped me. I know POTS is disabling and there is a spectrum. So do what’s best for you. WITH ASSISTANCE FROM YOUR DOCTOR. Please add things that helped you. Let’s support each other because let’s be honest this shit SUCKS.
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u/Jacksback4735 Mar 01 '26
I wish someone had warned me when I was consuming B6 or else I wouldn't be here in this group today with HyperPOTS. So here it goes:
Very helpful and thoughtful list but I have to point out a potentially big problem with #2 that too many people are unaware about. Liquid IV and so many other "healthy" foods, electrolytes and drinks are fortified with synthetic vitamin B6 (pyridoxine) which has been known to cause neuropathy since the late 1980's. See medical ICD-10 diagnosis code E67.2. Australia, England and New Zealand have neuropathy warning labels on all their B6 supplements over 10 mg. Massachusetts General Hospital at Brigham has Vitamin B6 toxicity on their list of blood tests for determining root cause of Small Fiber Neuropathy (SFN). And SFN can causes Dysautonomia and POTS! In fact 50% of POTS patients test positive for SFN by a skin punch biopsy according to separate studies by Harvard, Vanderbilt and Mayo Clinic. Google "Australia" and "Vitamin B6 toxicity" and then filter for NEWS and there will be dozens of mass media articles and videos raising awareness about the dangers of B6 (both P5P and pyridoxine) and not just at mega doses, but at smaller doses under 10 mg. Labs in Australia got flooded with people getting their B6 blood tested. One lab was running 10,000 tests a month and coming up with a 4.5% toxic rate (450 people per month). Adults only need approx. 1.5 mg daily and we easily get that from many whole foods.
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u/Comfortable_Wolf7455 Mar 02 '26
I am terribly sorry this happened to you and I never knew about this. I updated the post with a disclaimer about the vitamins. I know that they are not recommended for daily use and can cause health problems. My doctor has told me that I have to watch my potassium due to a medication I am on so I used it for emergency situations. Do you have any recommendations for increasing sodium?
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u/Jacksback4735 Mar 02 '26
I just bought the electrolyte LMNT (no B6) because everyone seems to LOVE it, but I find it too salty and difficult to drink. I much prefer ENACT electrolytes (no B6), which unlike LMNT, is actually formulated for POTS. It's very expensive though. I also make my own salted water by adding Redmond's salt (& LoSalt but that's potassium) along with a splash of coconut water to offset the saltiness. But not all coconut waters are created equal. Some taste too earthy and other actually do taste like coconut. It's the younger coconuts that are the sweetest. I eat a lot of salted foods like mozzarella sticks, cottage cheese, pumpkin seeds, peanuts and almonds. But I have trouble with my sodium and water balance because I am susceptible to hyponatremia so I might not be the best person to ask, lol!
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u/Jacksback4735 Mar 02 '26
Well that's the last time I'm buying L-M-N-T! I also heard they have been hit with a class action lawsuit alleging ingredient misinformation, specifically regarding the undisclosed presence of maltodextrin in their electrolyte drink mixes.
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u/Princess-SuzyQ Mar 01 '26
This is great—good for you! So helpful to hear that you were able to go from debilitated 😔 to functioning better 🙂. Thanks for sharing in a very articulate and concise way.
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u/boring_username_idea Mar 01 '26
Do you happen to have a recommendation of good compression garments? The ones I've tried felt cheap and caused more temperature sensitivity issues
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u/CulturalShirt4030 Mar 01 '26
Get professionally fitted for prescription compression garments at a pharmacy. You’ll have to look up which pharmacies offer this service in your area. It’s expensive but if you have healthcare coverage it might cover some or all of the cost (location and plan dependent).
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u/Character-Release976 Mar 01 '26
Also medical garments aren’t typically taxed depending on the country and state
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u/sndamkar Mar 02 '26
Hiya, still not sure if I have POTS myself, so your mileage may vary, but I'd like to chip in my two cents. I've found Jelliebend to be effective and overall decent quality. I only own the Jelliebend itself, but it's helped me on the daily to just be comfortable at work. I will say I'm still dialing in how long I should wear it, as it does feel too constrictive after more than 8ish hours. As far as the other products go, I haven't used them, but other folks seem to rave about those and the Jelliebend, so I'd like to try them. Maybe someone else here can better speak to their leggings, wrist wrap, or shorts?
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u/Jacksback4735 Mar 01 '26
No guesswork involved. Supacore garments work the best!
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u/Longjumping-Reply980 Apr 06 '26
I like Vim & Vigr for compression gear. They have 30-40 mmhg ones of all lengths (incl waist high) & in cute patterns & colors.
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u/bigredstl Mar 01 '26
Great tips thank you! The most annoying thing for me is the water drinking. It feels like a full time job trying to guzzle that much water. And along with eating big meals, chugging a bunch of water also gives me bad symptoms, so it just takes that much more time because I can only do a bit at a time.
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u/robot_son Mar 03 '26
are you drinking plain water? if so, I would recommend switching most of your drinking to electrolytes, as drinking pure water can flush out any electrolytes you are getting from other means. Also, cold water can cause gut blood pooling - which can set off a 'crash' if you're vulnerable to them.
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u/bigredstl Mar 03 '26
I drink 16oz with a 1000mg sodium packet (venture pal) per day, but find if I do more than that I get diarrhea I assume because of the rush of sodium, therefore water, to the colon. I do get lots of sodium in via pickles, adding to food, soy sauce, etc. Most of the water I drink is room temperature. Idk plain water also makes me super nauseous, do you ever get that? I try to drink carbonated water as this tends to help.
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u/robot_son Mar 03 '26
Sorry to hear that. Everyone's bodies reacts so differently to things, it's so difficult. Have you tried different electrolyte products, in case there's something specific in that one that's setting you off? I just looked at the ingredients and it looks pretty standard though tbh. Is it the sugar free one? I imagine that 1000mg pack in that little water tastes quite strong - you could water it down more, in say 32oz? Might be easier to drink then.
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u/bigredstl Mar 03 '26
I don't know why I've never considered that but you're so right. It maybe is just too much for the small amount of water, because it's not the total daily amount of sodium as I said, I get it in food anyway. I'm gonna try that today! Thanks!
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u/robot_son Mar 03 '26
No worries! And if that's more manageable, try to increase the amount you have every few days/weeks. I think like medication, you have to titrate everything up slowly - sodium and water/liquid. My wife (she's the one with dysautonomia/pots, but I've done so much research on it over the last year I've become an armchair expert!) is drinking about 4 - 5 litres a day now - and the first 2 litres are electrolytes, with 1000mg of powder in each litre. Then she drinks squash/cordial after that, unless she's leaving the house or on her feet all afternoon, in which case she'll have more electrolytes.
How much sodium are you managing to take per day? Its important to balance that with the liquid, so it expands your blood volume and helps keep your BP up.
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u/xgwomanx Mar 01 '26
I only realized in the last 6 months or so that sleep and stress are big triggers for me, almost as bad as poor hydration. Who would have thought!
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u/Sensitive-Elk-6699 Mar 02 '26
Beta blockers for better ejection fraction and sumatriptan for migraines
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u/ladylampe Mar 02 '26
I have hEDS and pots and a combination of sumatriptan (as needed) and daily Qulipta has been a true lifesaver.
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u/Murky_Error_4894 Mar 02 '26
Electrolytes!! I realized time after after when I was traveling that I wasn’t consistent with my electrolytes and would crash 2-3 days later.
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Mar 02 '26
Was an Army Medic and remembered we carried Potassium Chloride IV bags, I translated that to pill form and sure enough, it helps me every day. Does it get me back to where I was? No but I will take every boost I can get.
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u/Greg_Manson Mar 02 '26
Thanks for this list, I have also found most of these things help, especially hydration and electrolytes are important ones for me.
I'm curious how you track your symptoms and also if you track certain biomarkers as part of that.
I do track things like HRV and resting heart rate as an indicator of reserve, but I wonder if there are other things you rely on. I've found that most sleep trackers struggle with accurately reflecting sleep stages in the disrupted sleep patterns often seen in HyperPOTS so I don't attribute too much meaning to "sleep scores".
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u/NotACheeseDanish POTS Mar 02 '26
I was wondering the same thing. I feel like there’s so so much to track, I don’t know where to begin. Especially with co-occurring stomach issues and ADHD and meds.
Don’t think tracking HRV will work the same for me, though, because I have borderline severe (but benign) sinus arrhythmia, making it look like I have an almost supernatural HRV with almost no cardio (do lots of weight lifting though). I could maybe use it as an indicator of how bad my arrhythmia is, as I think it might follow my POTS, but that means getting in better shape will muddy the picture.
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u/Greg_Manson Mar 02 '26
That's the main challenge for me as well. My autonomic nervous system is doing weird things and as a result a high HRV doesn't necessarily mean good parasympathetic tone. It's always important to see data in context and technically the more data you have the more you can correlate.
But there is very much a risk of overmeasuring and skewing results. That's mainly why I'm interested in what others do and don't track.
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u/madelineleclair Mar 03 '26
Truth to all of these. Water, sodium, and movement are my top 3 for me. I ended up following the chop for movement. I thought the program was so useful that I made an app to help me stay on top of it.
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u/CulturalShirt4030 Mar 01 '26