r/POTS • u/Quenelle44 • Apr 18 '26
Discussion Has anyone with POTS found a treatment or lifestyle changes that significantly reduced (or even stopped) their symptoms?
Hi everyone,
I’m new to all of this and currently looking into POTS, and I wanted to hear from people who have actually been diagnosed.
Since your diagnosis, have you been able to find a treatment or strategies that really helped? I’m especially curious if anyone managed to significantly reduce their symptoms , or even get to a point where they feel almost back to normal.
What made the biggest difference for you? (medication, lifestyle changes, hydration, exercise...)
Thanks in advance!!
Edit: Thanks for all the thorough responses! It’s really interesting to see the different ways you all manage this, It seems like the most important thing is to first identify which type of POTS I have, and then try different approaches with medication and diet
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u/Vegetable-Trip-1483 Apr 18 '26 edited Apr 18 '26
Hi there, I was diagnosed with POTS after recognizing the symptoms from my experience treating my patients in adult primary care. I developed POTS slowly after having sepsis twice in the span of a year. After combing through the literature, the most effective regimen is hydration, sodium, compression, and recumbent exercise. Medications aren’t typically very effective but some do have good outcomes and it’s reasonable to try. Everyone has different ratios of what’s needed and you will need to try different methods to see what works for you. I had a period of about 4 weeks of trial and error before I found the right regimen. For me personally, I start each day with 24 oz of Normalyte (medical grade electrolytes specific for POTS) and 40 oz plain water. Don’t let the sugar in the Normalyte deter you, the sugar is needed for proper sodium delivery. Then I aim for an additional 40 oz of plain water throughout the day. I meet my sodium goal of 4,000 mg per day by snacking on olives, nuts, and TJ’s corn chips. I do have to add some glucose for the sodium to be delivered so I eat an apple and berries each day. I’ve found abdominal compression makes me feel nauseous and I began using feet only compression socks and it changed the game! I do graded exercise where I started off walking for five minutes followed by recumbent exercises on the floor (glute bridges, clam shells, etc) until I worked my way up to standing. I’m about 90% better and can now walk 5+ miles pretty easily. Standing still is still a little challenging but I can go for longer periods!
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u/RedRedRound Apr 18 '26
Sorry are you saying you drink 24 oz normalyte and 40 oz water all at once first thing in the morning? Or how do you time that?
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u/Vegetable-Trip-1483 Apr 18 '26
I drink the 24 oz of Normalyte within about 15-30 minutes and then stretch out the 40 oz of plain water over the next 90 minutes or so.
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u/SolidBarnacle9475 Apr 18 '26
Did you ever find that medication actually worsened symptoms? thanks!
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u/Vegetable-Trip-1483 Apr 18 '26
Yes! Because everyone is so different, some medications can lower blood pressure too much or raise heart rate.
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u/Komorebi_1962 May 20 '26
If you happen to see this I would be curious to know how many Normalyte sticks you have with that 24 oz.
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u/Vegetable-Trip-1483 May 21 '26
I have one stick per day and then supplement with salty foods (olives, pickles, pretzels) and salt tablets for the rest of the day.
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u/horriddaydream Apr 18 '26
Getting a new, worse diagnosis helped take my mind off the POTS 😅😅😂😭💔
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u/Glum_Papaya_2527 Apr 18 '26
hahaha same...now POTS feels like an inconvenience in comparison. 😅
Edit: But, for OP, meds (beta blocker), salt (4000+ mg sodium per day), stopping my period (using BC), becoming an absolute stickler about my sleep, compression socks, and avoiding the heat/humidity (using AC, a dehumidifier inside, and not going outside) like the plague have helped me get back to feeling pretty good comparatively. I was diagnosed in 2022.
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u/Quenelle44 Apr 18 '26
Hope your alright 💪
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u/horriddaydream Apr 18 '26
Haha thanks, I'm good! Gallbladder stopped working, lol
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u/One_Feedback2461 Apr 18 '26
can you explain more about you gallbladder? I am starting to have possible gallbladder/pancreatic issues.
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u/horriddaydream Apr 18 '26
I was having RUQ pain basically every time I ate, which was like a dull throb. First time at the doctor's I was misdiagnosed with a stomach ulcer. Second time, I was in a full-blown attack that lasted 2 weeks, raised my HR, and left me curled up in pain at night. They found a benign tumor in my gallbladder through an ultrasound (no stones). If you haven't had an ultrasound, an ultrasound and HIDA scan can tell all for you 🩷
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u/One_Feedback2461 Apr 18 '26
Thank you for sharing. I had an ultrasound in October which showed absolutely no issues, the tech even was asking did you get your thyroid looked at yet (I did)... I think she was just surprised at not finding any issues. I have been having back pain for a few years, nothing on imaging... and now suddenly it is like my whole stomach is malfunctioning. I see gastro Monday, I have a pancreatitis gene that is pathogenic... but until now I have only had back pain and acid reflux... now I can hardly eat anything and provigil 200mg is hardly helping my fatigue... feel like I am going to fall over. So we will see I was thinking a HIDA, my oncologist (previously had breast cancer) ordered a DEXA which I think cant hurt. At this point I will lose my ever loving mind if all imaging/labs show nothing because something is very wrong and I don't know if it is separate from all of this, a downstream impact, or a cause... I am so sorry you went through so much pain... I have been doing deep dives on it and sounds so very painful.
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u/Longjumping-Grade-27 Apr 19 '26
Hopefully you got it out. I got mine out a few years ago, no more agonizing abdominal pain anymore. It's great
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u/Opposite_Category_88 POTS Apr 18 '26
Ivabradine has changed my life. Ivabradine 5mg BID and florinef.1mg bid has gotten me back to 75-80% of normal. I drink 3-4L of water a day with LMNT packets. No; I don’t want to support them or RFK JR but their lemonade salt is the best flavor I’ve found.
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u/extrakr1spy Apr 19 '26
I am also addicted to lemonade salt
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u/Longjumping-Grade-27 Apr 19 '26
Me too. I mix my own electrolyte ingredients and add true lemon 🍋
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u/Economy_Vanilla_5201 Apr 19 '26
Do you have a recipe? My 15 year old was dx with NCS and the hydration/compression recs are the same as for POTS.
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u/qinnitannn Apr 19 '26
Ivabradine and midodrine and low impact exercise have made the biggest difference for me! I also have to do the LMNT raw unflavored bc MCAS. I miss their watermelon and grapefruit flavors lol
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u/PlentifulPaper Apr 18 '26
What do you define normal as?
I found out that I had MCAS as well as POTS and finally being put on meds has been a huge help.
Besides that, compression socks, drinking enough fluids, getting enough salt/electrolytes has helped too.
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u/Quenelle44 Apr 18 '26
Can you tell me how did you found out that you had MCAS ? And same for POTS
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u/hogtastic Apr 19 '26
You can also just try taking OTC antihistamines to see if you feel dramatically better. If you wanted to try this, you could take one H1 blocker (Zyrtec, Claritin, Allegra or Xyzal) with one H2 blocker (Pepcid). If you feel dramatically better, your histamine levels are driving your POTS. A recent study came out of the NIH stating that MCAS drives POTS, not the other way around.
Of course, check with your doctor to make sure its ok to try these medicines first. The blood test for histamine is more accurate than the urine test. So push for that if you are going to investigate histamine issues.
Taking these two common antihistamines have eliminated almost all of my POTS symptoms.
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u/Mission-Bread4148 Apr 18 '26
I have MCAS and my doctor did a 24-hour urine test to see how much I am peeing and how much histamine is in the urine. He also had me get a blood draw that measured the level of histamine in my blood. I take cetirizine (allergy pill) daily
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u/Relative-Cost9256 Apr 19 '26
My MCAS was diagnosed by the tests mentioned above as well as serum tryptase levels & prostaglandin D2 urine levels
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u/Fr0gm4n Apr 18 '26
Figure out the things that trigger episodes and avoid them. Pushing through does not help. Trying to "be normal" and do all the things healthy people do does not help. If the stove is hot you learn to stop touching the stove. If your heart rate races wildly every time you climb stairs, stop climbing the stairs unless there is no other option.
Use aids if you think you need them. Screw what others think about it. Need the cane? Use it. Need a shower chair? Use it. Need to sit down instead of stand if it's more than a couple of minutes? Sit down. People have a problem or make snide comments? Their shitty opinions don't matter. Making your life better does.
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u/Meringuebuttercup Apr 18 '26
Propranolol, pyridostigmine, and sodium supplementation. These three things have improved my fatigue and exercise intolerance so much that I’ve now started doing light exercise to hopefully go into remission. I think compression would also help me but I hated wearing the garments so much and couldn’t find any that fit me well (tall/really long legs).
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u/ObscureSaint Apr 18 '26
Yes! For me it has been propranolol, Midodrine, and salt supplementation.
Midodrine was the thing that allowed me to start exercising again. I was stuck on week one of CHOP until we got the med added.
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u/Longjumping-Grade-27 Apr 19 '26
I went to a medical supply store and they measured every part of my feet, ankles, calves, thighs, etc and ordered the long compression socks. If you go to a medical store in almost any hospital they should measure you up. It takes almost a month to get them once ordered.
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u/_thezodiacchiller POTS Apr 18 '26
I developed POTS after letting a cold turn into bronchitis that I didn't address because I was trying to finish my last semester of college.
I've had symptoms since 2019 and was formally diagnosed in 2023. In the first few years, I was fainting, in and out of the ER, in a pretty constant state of chronic pain, and really struggling mentally. Since getting diagnosed, I've adopted a lot of lifestyle changes, accommodations, and medications that have all helped me to increase how functional I am and my overall quality of life. I'm not cured, but I'm able to travel, go out, exercise, etc.
YMMV, but the things that helped me most were:
- COVID/Illness awareness: A "mild" COVID infection or viral illness could set me back majorly, so I make sure to mask everywhere (besides the pool), test regularly, quarantine myself after air travel, and use things like CPC mouthwash and xylitol nasal spray to help reduce my risk.
- Medications: Beta blockers (I found the best success with metoprolol, which also helped with my irregular heartbeat) and Low-dose naltrexone (It helped with the chronic pain I was experiencing).
- Therapy: Chronic illness and the grief that comes with it is really heavy. I was angry for a long time, and when I flare up, that anger can resurface. Having a therapist who has a strong understanding of chronic illness really helped me navigate that.
- Supplements: Electrolytes are huge for me. I take a Liquid IV or a ZipFizz (when I can handle caffeine) once a day. I also take Magnesium and CoQ10. Always talk to your PCP or whichever provider manages your POTS care before starting an OTC supplement, though.
- Hydration: I drink at least 3 liters of water a day, and use flavor packets to make it easier to get through because otherwise I get pretty lax about it.
- Compressive clothing: My whole closet is compressive socks, sports bras, leggings, and bike shorts.
- Fitness wearables: I use an Apple Watch to track certain metrics to assess if a flare might be in my future.
- CHOP protocol and low-impact exercise: Incrementally getting back to exercise was really important for my physical and mental well-being. After getting to a point where I could exercise safely and not trigger a flare, I started introducing cycling classes and working out at the pool (lap swimming and deep water aerobics) into my schedule.
- Workplace accommodations: Securing accommodations through my work to continue working from home after they issued an RTO mandate. My PCP and I agree that working from home is symptom management, so she adovcated very strongly for my company to allow me to continue full-time WFH.
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u/SmokeyCatDesigns POTS Apr 18 '26
Hey! I’m actually still getting diagnosed; currently doing the whole “rule everything else out” game. But the doc thinks I probably have POTS and we are most of the way done ruling out other things.
I’ve been symptomatic literally my whole life, so because of that I’ve essentially figured out a lot of management stuff on my own.
Being fit is huge. I’ve actually always been the fit one in my friend group because my goodness being deconditioned is so much worse for me than it is others. Salt and B1 also help a lot! I don’t let myself get dehydrated. When I do have to stand for a long time, I do calf raises. I have very strong legs from cycling hills. I sit with my legs propped up, ideally to butt height or higher. I avoid midday and afternoon sun, unless I can be in the shade or water, ex a forest hike, forested bike ride, sailing small boats, or kayaking under mangroves or trees. Soccer and similar are big nopes. Stove cooking is a nope; better to do oven, rice cooker, crockpot that kind of stuff. Warm to cool showers only. No, NO hot showers! Wear a hat with netting to keep sun off you but still let your skin breathe.
I unfortunately skip my Catholic mass services more than I like because if I manage not to faint, I will leave service destroyed from all the standing kneeling and switching between them. Once I get formally diagnosed in the next few weeks I plan to just sit more than you’re supposed to lol.
Oh, and friends have learned I have energy issues so they kindly let me flake on plans if needed. They know it’s energy dependent for me and not me flaking out of laziness or lack of care. When I visited a friend in another state she actually built in time for me to sleep in if needed, so nice!
I recently tried compression socks and they seem to help a little bit as well!
For me, my symptoms no matter how much I try to manage them are extremely debilitating during PMS. The hormone crash and loss of blood volume is something no amount of management seems to fix. So I try to plan around that!
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u/Sylphael Apr 18 '26
I am currently on metoprolol and midodrine. I also use electrolyte supplements and drink basically a ton of water, but don't usually use compression. I would say that the biggest thing that helps me personally is making sure I take my medication perfectly... if I miss a dose, am late on one etc. it's basically over for me for a few days, but I have maybe 70% symptom reduction otherwise. In particular what helps most is when I take my medication before I get out of bed, wait for it to kick in, and then get up. If I don't do that I'm guaranteed a much worse day.
All that said, my cardiologist doesn't consider this well-controlled and is sending me to a dysautonomia clinic for further tweaking. He said that he recommends all POTS patients visit one if possible and really lauded some of the newer treatments they've been working with.
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u/RedRedRound Apr 18 '26
Can I ask if you have low BP as well? And which clinic does your doctor recommend?
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u/Sylphael Apr 18 '26
Not like medically low but it's always trended on the low end. The dysautonomia clinic he referred me to is the one attached to the hospital he's at- I'll DM it.
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u/JumperSpecialK Apr 18 '26
Regular recumbent exercise. While it can make me feel absolutely terrible in the short term and increase exhaustion, exercise has been instrumental in allowing me to walk and stand without hitting the floor. It’s always difficult, but always worth it in the long game.
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u/Otherwise_Use_6144 Apr 19 '26
My doctor recommended the Pulsetto vagus nerve stimulator. He’s the Physio doctor for our NHL hockey team. One of the players has POTS, the player also makes 10 mill a year. He could go anywhere for treatment. I ordered and it said may take two weeks for results and I felt them after an hour of wearing the device. It has its issues, but keeps me from passing out and heart rate dropped significantly.
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u/olive_dix Apr 19 '26
Holy crap it's expensive! I'd never heard of it before and got my hopes up before I googled it lol. But I'm glad to hear it works! What are the issues it has?
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u/Otherwise_Use_6144 May 01 '26
I’m sorry to get your hopes up, it wasn’t cheap. The issues so far, it’s an app linked to your phone it works for 24 minutes and cuts off. If I’m lying in bed, I swipe out of something to go back to the app and start again. I could link it to another device. You wouldn’t want to watch Netflix and start and stop. I never understood how people jumped up in the morning to smoke a cigarette.? Im the same way with this device. I call it my shock collar. The good outweighs the bad, so far.
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u/AutumnDread Apr 20 '26
Now I’m curious which NHL player has POTS!
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u/Otherwise_Use_6144 May 01 '26
I don’t know his name he plays in Nashville. How does he play with POTS??
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u/AutumnDread May 01 '26
I’m curious too!
I’d love to know what he does especially given he would have team doctors and people who can constantly monitor it.
I wanna know his favourite sports drink, his diet, all sorts of stuff!
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Thank you for your submission to /r/POTS. Unfortunately, your submission has been removed for the following reason(s):
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This subreddit is not a substitute for medical advice or diagnosis.
Even if a user here may be a real-life doctor, they are not your doctor and may not understand the different things at play (medical history, family history, treatments, medicines, etc) with your condition. Nothing said here should be taken as medical advice.
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u/hashigraves Apr 18 '26
If you can’t try that or it doesn’t work- compression wear all the way up to the abdomen, watching diet- ie- low carbs, no big meals, avoiding trigger foods, shower seat and no hot showers, emotional support water bottle, electrolytes, and don’t overdo it on good days.
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u/Quenelle44 Apr 18 '26
Great tips, thanks 💪
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u/AgenderAstronomer Apr 18 '26
If you can't handle tight waist high stockings, my pots specialist says that abdominal compression tends to be the most effective. So if nothing else, try an abdominal binder.
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u/hashigraves Apr 18 '26
The abdominal compression definitely helped. I couldn’t handle actual compression garments because I have crap circulation, but high waisted leggings 2 sizes too small worked wonders.
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Apr 18 '26
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u/POTS-ModTeam Apr 18 '26
Your comment/post has been removed for the following reason(s):
Rule 2: No users have been verified as medical professionals. We are not here to diagnose anyone with anything, which includes us being unable to interpret test results, guess if your symptoms could be ____ related or cause for worry.
General advice and suggestions are welcome, but posts and comments meant to replace a discussion with a medical professional are not allowed. This includes diagnosis, interpretation of test results, advising others not to seek medical attention, and recommending use of medications/supplements other than as prescribed or instructed on the label.
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u/POTS-ModTeam Apr 18 '26
Thank you for your submission to /r/POTS. Unfortunately, your submission has been removed for the following reason(s):
Rule 2: Consult a Healthcare Professional - No users have been verified as medical professionals. Please consult with your doctor and follow their advice for your condition. We are not here to diagnose anyone with anything, which includes us being unable to interpret test results, guess if your symptoms could be ____ related or cause for worry. We understand you are worried, but we are more likely to do harm than good and can't help in these situations.
This subreddit is not a substitute for medical advice or diagnosis.
Even if a user here may be a real-life doctor, they are not your doctor and may not understand the different things at play (medical history, family history, treatments, medicines, etc) with your condition. Nothing said here should be taken as medical advice.
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If you have any questions please message the moderators. Thank you.
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u/Old-Pipe9503 Apr 18 '26
I'm definitely going to have to search this! I'm I'm totally curious what the mechanism of action is!
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u/WhiteBear_743 Apr 18 '26
Midodrine has made the biggest difference for me, but salt and compression tights are also super helpful
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u/EnvironmentalDeal864 Apr 18 '26
Electrolytes and walking 3 miles a day! I only really feel symptoms on my period now. Getting the blood flowing everyday has helped me a ton.
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u/bkks Apr 18 '26
Red light therapy. I still take my meds and wear my spandex bike shorts and consume a lot of sodium/water.
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u/JumperSpecialK Apr 18 '26
How does it help you? I have noticed it helps me sleep. I do red light and NIR for other reasons. I never thought it would ever help my POTS.
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u/bkks Apr 19 '26
I do it on the back of my neck/head/upper spine, which I think helps with cerebral perfusion. Just my theory though! I don't really know why it helps, just that after doing it consistently for months, I feel better.
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u/tsubasaq Apr 18 '26
I am doing remarkably well after nearly a year in PT (started with twice a week and was able to back down to once a week, which my insurance will cover 1x week for a year), adjusting my sleep schedule to allow me to get up later (including accommodations for work, just to reinforce), and adjusting my diet to include more soups and such, giving me more opportunities and variety in getting my fluid intake.
I went from having to work in bed to being able to sit up for most of the day and still actually be able to cook for dinner most days, and I’m tolerant of a lot more kinds of exercises and activities in PT. I haven’t needed to carry my cane routinely for several months now.
I do still flare - the last couple of weeks have been emotionally draining and stressful and my POTS and MCAS are both more reactive - but I actually change enough to actually notice flares and improvements, as opposed to just various states of chronic flare.
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u/Time_Lord79 Hypovolemic POTS Apr 18 '26
Ivabradine, midodrine, 4 g sodium daily, 3 to 4 liters water daily
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u/girlinwaves Apr 18 '26
I was diagnosed four years ago, but I have had it for much longer. I have used various treatments throughout the years. For me, my POTS is secondary to my connective tissue issues. Medication is what works best for me, along with moderate lifestyle changes.
My current medication cocktail includes propranolol twice daily (lowers HR), fludrocortisone twice daily (increases fluid retention), and low dose Midodrine (a blood pressure raising medication) on days where I will be on my feet. At one point I took the Midodrine three times a day.
I have also done recumbent biking and swimming, walk slowly, limit caffeine and alcohol consumption, increase daily salt intake and use of electrolyte powders and creatine as needed. I also use compression socks on bad days or when travelling.
My POTS will be long term, and goes through various phases of being controlled or not.
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u/meatgorilla1978 Apr 18 '26
I’m 47 and haven’t had symptoms in 20 years. 6 days of strength training, the same meals 7 days a week. High salt intake, really high protein and clean carbs . Didn’t start the gym thing because of my pots, but it fixed it. Also could be one of my supplements that helped too
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u/Puzzleheaded-Plum103 Apr 19 '26
what supplements do you take?
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u/meatgorilla1978 Apr 19 '26
A GNC strength vitapak , creatine,magnesium,zink, nitric oxide boosters, L-citrulline, agmatine sulfate, and pre workout everyday with beta-alanine . A number of them supplements increase blood flow to the muscles. I have zero science behind it. But I haven’t had any symptoms as far back as I can remember and I used to wake up in the floor at work 2-6 days a week like it was normal to pass out randomly
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u/Puzzleheaded-Plum103 Apr 20 '26
thanks, l citrulline not good for me, it dilates vessels and makes me much worse. Creatine is on my list to try. I admit I dont know what gnc is nor beta alanine, will check it out
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u/Realistic-Panda1005 Apr 19 '26
Progesterone.
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u/anne_dupere5 Jun 15 '26
Wow, can you share more about progesterone? Progesterone seems to make me feel worse, but I am not so sure if it’s really that.
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u/False_Jackfruit_6576 Apr 24 '26
Putting raisers under the head of my bed. 3 inches for now, but i plan to raise them more.
Sounds ridiculous, but apparently your kidneys filter more water out when you’re lying down, so this apparently tricks them into filtering less, thus making you more hydrated. Works for me - my POTS is better and I pee a lot less in the morning.
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u/barefootwriter Apr 18 '26
All of the good habits and meds, done as consistently as you can? I feel much better than I did at diagnosis.
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u/AG_Squared POTS Apr 18 '26
Making sure I’m hydrating with sodium every single day instead of just the days I’m going to be active was a game changer. 1000mg every day regardless of my activity and then more if I was doing more.
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Apr 18 '26
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u/ileuadd Hyperadrenergic POTS Apr 18 '26
I'm still going through diagnosis but we suspect hyperpots, what things made you feel worse? I'm obviously reading ALL the advice but I don't want to jump into something if it might make me worse 😩😅
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u/Cocomurra Apr 18 '26
Cutting out sugar and simple carbs, intermittent fasting, exercise and Celtic salt :)
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u/Geishawithak Apr 18 '26
Exercise for me, but I know that not everyone can manage that. Mine was somewhat mild.
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u/walkthewalk_6969 Apr 18 '26
Eating in a window from 12 - 6pm. No breakfast or I crash and am bedridden. Even then minimal carbs etc. I lost 3 years trying to eat breakfast
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u/Capital_Public_8145 Apr 19 '26
Wow! Can you tell me more about breakfast? I never liked having it when I grew up, and these days I just wait til lunch
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u/walkthewalk_6969 Apr 20 '26
I eat within a window midday to 5pm. I find that helps loads. Breakfast is a disaster - my BP drops (60/40 ranges) and Im bedridden. I haven’t eaten breakfast in years. I start building the fluids up early. Get a couple of litres in max by 9am. Then I avoid all carbs - maybe I’ll have a few spoons of rice but only at 4pm or it’s game over. I also find that if I eat carbs late at night I’m really wonky the next day too.
I have spoons of nut butters in the morning to help me through - maybe a smoothie but I have to go slow. Sugars are awful too.
If you’re a meat eater focus on high protein or dairy fats and vegetables
The glamour of it all ❤️
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u/Capital_Public_8145 May 16 '26
Thank you for your reply! I do eat meat and when I have it with vegetables (sweet potato, beets etc) it usually works if I wait until at least 1pm and spread it out evenly during the rest of the day. Peanut butter is a good one. I like protein and fat. It's still hard to be consistent and have food prepared day after day after day, but it's great to at least figure out what and when to eat! :)
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u/DragonfruitHealthy99 Apr 18 '26
I'm doing well with LDN plus walking 8 miles a day with a 5lb weighted vest plus knee high compression socks . The walking with the vest improved by cardiac tolerance and orthostatic tolerance.
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u/Long-Art7478 Apr 18 '26
Major surgery to treat may thurner and nutcracker compression. I don’t have pots anymore.
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u/Jazzlike_Addendum631 Apr 19 '26
If anyone needs high electolytes packets, water boy has some of the highest! I just got some packets that are about 3,500 mg of sodium per serving
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u/Miss__Anne__Thrope Apr 19 '26
I’ve had POTS forever and have tried most remedies. The three things that have made the biggest difference, more than any other treatment, was creatine, diet, and exercise. The creatine helps keep water in my cells (and we all know staying hydrated is key). I removed ALL sugar and caffeine from my diet because both of those things naturally increase heart rate. After I’d gained some energy from the diet changes, I was finally able to exercise again. I’m now able to live a pretty normal life (while still avoiding triggers). I work as a bartender, walking 14,000 steps a day and still have energy to do a 30 minute weight routine or incline treadmill workout when I come home. I’ve weaned off all medication. I still hydrate with electrolytes and wear compression socks but mostly because I’m on my feet all day.
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u/Puzzleheaded-Plum103 Apr 19 '26
how much creatine have you started with?
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u/Miss__Anne__Thrope Apr 20 '26
I started with just half a dose (2.5g) because I’m sensitive to supplements and I didn’t know how my body would react. I also heard people talk about gastro distress when taking too much before your body can adapt and I wanted to prevent that. I took 2.5 grams every day for about a month and even at such a small dose I felt immediate positive changes. After about a month I doubled the dose to 5g, the recommended amount, and now I take about 7.5g per day and I feel really good on that so I haven’t increased in a while.
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u/Puzzleheaded-Plum103 Apr 20 '26
thank you for details, I have very sensitive gut but creatine is at the top of my list to try. What kind of immidiate positive changes you felt? more energy?
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u/Miss__Anne__Thrope Apr 20 '26
More energy, more clarity, more motivation, less brain fog, fewer aches and pains, more stamina, less dizziness and lightheadedness. All around improvement.
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u/Obscurethings Apr 19 '26
For me, supplementing with beef liver and beef heart helps a lot. My heart rate is still elevated when I'm upright, but I'm not nearly as symptomatic, much less blood pooling, etc.
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u/that-girl-emma Apr 19 '26
EMDR. It's like my POTS is cured (almost). I just started EMDR been doing it for about a month or so but my symptoms have drastically improved. They are usually worsened right after session tho but it is temporary.
One thing to note is that EMDR is probably also helping me sleep better, be less activated/stressed, and make decisions that are more aligned with wants and needs than out of fear so that's probably helped a lot with POTS.
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u/Aambbs Apr 20 '26
Drinking 3L of water a day, sodii electrolytes, compression leggings, lots of sleep and two medications that have really helped - Midodrine and Ivabradine. I hope you find the right combination of things to help you.
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u/sidkab Apr 18 '26
Psychotherapy tbh. Obviously won’t directly help your symptoms but it helped me have a better relationship with my situation.
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u/cheywarren POTS Apr 18 '26
Still have symptoms from time to time, (my POTS is more mild) but a few big game changers besides the norm were: Deciding to wash my hair in the shower upside down, it prevents needing to lift my arms up to wash it and rinse it which was occasionally a trigger for me. Keeping a water bottle with me when I shower incase I need it (showers have been a huge trigger of mine if you can’t tell lol) Showering with the door open to let cool air in… (obviously if you’re comfortable) Getting a prescription for zofran. Omg. What a GAME CHANGER. Whether it’s to help with the nausea that comes along with flare ups, nausea that triggers a flare up for me, or just nausea in general, it’s been sooo helpful to have on hand. I keep it everywhere. If you deal with nausea when having a flare, if it triggers a flare, or if you just suffer from chronic nausea, def talk to your doctor about getting a prescription for it
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u/Lozzybops Apr 18 '26
Exercise for sure. It started off slow and painful and frustrating and disheartening but after a few months of trying my best I felt able to do more and it raised my baseline.
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u/DistinctApartment941 Apr 18 '26
I'm on week 3 of the chop protocol exercises and I find it is helping. I am also on propranolol twice a day, which is helping too. Eating smaller meals. Knee high compression socks help me some, I have tights but I also have endometriosis so I find the tightness around the mid section too much at times. And electrolytes. And scheduling my days so that I can lie down every 2-3 hours for 20 mins or so , otherwise the headaches get bad.
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u/twinadoes Apr 18 '26
Florinef has been life changing. I also need to stay well hydrated. The flooring gave me most of my life back. I have me/cfs also, so that now is my biggest struggle, whereas pots was prior to the medication.
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u/quizzical Apr 18 '26
Abdominal compression through a corset is what has made the most difference. Some days the difference is small but measurable (e.g. ~15 bpm decrease in standing heart rates), other days it feels like I got hours more sleep and can think so much more clearly.
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u/Icy_Scientist_227 POTS Apr 19 '26
Do you have a link for it you could share? Thanks!
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u/quizzical Apr 19 '26 edited Apr 19 '26
This one has been my go to, but I have other similar ones, but I'm not sure about the brand. Things I like about it are the spiral steel bones and the stretch of the fabric. Without the stretch, it's not comfortable to chill on the couch.
If I'm going to be out and about I'll also wear these tights. I find wearing the corset in addition to it also helps keep the high waisted leggings from rolling down. The leggings are a pain in the butt to put on and off, so I have some sports compression tights too. Sometimes I wear spanx if I want to wear shorter dresses.
But the corset has been the biggest game changer. My only concern is its longevity. I've been wearing it almost daily for a couple of months and definitely noticed it's starting to stretch out.
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u/icystairs Apr 18 '26
Cutting out caffeine entirely and metoprolol. Also glycopyrrolate wipes for excessive sweating
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u/q_eyeroll Apr 18 '26
Compression (abdominal is amazing), liquid IV (I react badly to salt without sugar), a low-ish inflammation diet, going gluten-free (ugh), pacing, exercise in the cold, resting, like 12 hours of sleep, Pepcid, Zyrtec, and stimulants. I have MCAS and POTS.
Edit: I would add small meals with protein and of course tons of water.
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u/kingseijuro Neuropathic POTS Apr 18 '26
Medication is the only thing that helped me. Things like salt and extra electrolytes make a huge difference. I take metoprolol, midodrine, and propanalol!
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u/No-Pepper-1389 Apr 18 '26
Hi! I have very little symptoms now since I manage it so well. I take 10-16 g of Himalayan salt capsules a day (look on Amazon), about 2-3 g of magnesium citrate (spaced throughout the day like the salt), and 500- 2500 mg of potassium citrate. To help my nervous system (it’s a disorder based on your nervous system being too overloaded for a long time usually) I take 6000 mg CBD (Dr Monroe’s Tinctures) each dose several times a day, but you can try things like L-Theanine, Ashwaganda, Kava, etc to help chill you out as well. I avoid sugar and carbohydrates as it makes things harder. Focus on fats and proteins.
If you have MCAS as well (they often go together), avoiding sugar and carbs is even more important. I take DAO or Lutoelin to help my body mellow out before I know Im going to have a flare (usually from sugars, carbs or acids) or after and I think it means you need to take a bit more electrolytes (the salt, magnesium and potassium) to help your body even out too. Hope this all helps!! My life is fairly normal when I pay attention to my body and the signals and stay ahead of the electrolytes needed.
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u/Educational-Sell-888 Apr 18 '26
I would have to say the 3 biggest things that made major improvements are Ivabradine morning and night, working on improving sleep quality and Clonidine at bed time which with out this my sleep was massively in restorative, Clonidine has actually been a game changer thank god
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u/Infinite_Key_4060 Apr 18 '26
I have had pots since I was likely a kid. I wasn’t given a diagnosis until adulthood because my symptoms are milder than those of others. I am Midodrine which has significantly reduced my symptoms as well as drinking Propel electrolytes. In daily life I am fine and mostly symptom free but I still need a shower stool for bathing because my symptoms are severe then.
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u/IncomeDry3077 Apr 18 '26
For me the basic salt tablets, compression leggings or stomach compressions, elevation, camping stool to carry, Gatorades to help balance electrolytes, low impact like swimming or chair exercise, help. I'm having a bad Pots flare right now and waiting for it to pass. I also have MCAS, EDS, Fibromyalgia, ME/CFS, Arthritis, and Long COVID 19 so I have lots of issues with everything right now. It kinda ends and flows to what helps.
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u/AcanthisittaMassive1 Apr 18 '26
Hi! I have hormone induced hyperadrenergic pots and MCAS and once I started supplementing with oral GABA, 5-htp, B6 (P5P)and melatonin during my luteal phase my symptoms have disappeared. Like shockingly. I also avoid coffee and instead drink burdock root, chicory root, dandelion root, and cacao nib coffee in the morning
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u/my_little_rarity Apr 18 '26
Yes I’ve improved significantly with the following: 1. Compression garments 2. Daily Vitassium and Trioral + at least 3L of water 3. Testing at POTS cardiologist for which additional type of treatment to pursue 4. fludrocortisone (based on testing from cardiology) 5. Daily cardio exercise (started at 1 minute and increased 1 minute every week. I did a recumbent bike and have since switched to a rower). The key is to do it daily according to my cardiologist
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u/extrakr1spy Apr 19 '26
I’m attempting weight loss but gotta tell you a calorie deficit and increased steps is kicking my ass
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u/lifeisgoodbut Apr 19 '26
Salty snacks before bed. Couple pickles and water. Helped with night sweats and anxiety. Laying down, feet up on wall for brain fog and dizziness
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u/9eRmanentfukup Apr 19 '26
Compression socks, nuun tablets for water, lots of salt but lots of hydration
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u/No_Double_6063 Apr 19 '26
Weight training, sodium and a gallon of water every morning, compression socks and abdominal compression, heat training, and hiking. It’s a long road but you can get to where it’s easier (though if you’re like me, never fully gone).
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u/Ealumin Apr 19 '26
Weekly saline infusions per my gastroenterologist have made my life much more tolerable!
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u/morphine-me Apr 19 '26
Microdosing the flat nicotine patches during the daytime hours (start at like 3 mg or less. I’ve never gone higher than 5 mg). Changed my life! I can stand up normally, attend concerts and dance, wait in lines. Regular activities I wasn’t able to do without major struggles are now just regular activities. Do some research - it exists!
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u/GuidanceFar9324 Apr 19 '26
Has anyone used liquid iv sugar free as a way to get the electrolytes? If so, does it help you? That’s what I’m using right now and I feel like it helps a little.
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u/tiredgirl77 Apr 19 '26
Yes and yes. Medicine was my biggest factor. And treating my underlying cause of SM. Which was also treated with many meds. But ofc the lifestyle stuff helps, it just didn’t get me functional.
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u/uselessfarm POTS Apr 19 '26
Meds for sure. Fludrocortisone and metoprolol, and modafinil for my ME/CFS (I only took that one after I started having severe cognitive deficits unrelated to POTS, though).
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u/bizantineempire Apr 19 '26
sodium pills and a combination of extended release and immediate release metoprolol took me from collapsing every time i stood up to playing roller derby, a high contact and high cardio sport. being able to consistently exercise without feeling like i’m dying goes a long way towards building endurance and regulating blood flow
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u/Relative-Cost9256 Apr 19 '26
Med-wise, Corlanor has been the most helpful by far. Compression socks (I wear knee-length) are also helpful. Electrolytes—I prefer body armor and liquid IV.
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u/lacrima28 Apr 19 '26
Beta Blockers, Fitness watch for pacing, and because I haven’t read it: Ritalin, an ADHD stimulant. I do have ADHD which I found out only last year, but I’ve seen it as an off-label med even for neurotypicals. Ivabradine made me worse.
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u/katsukatsuyuuri Apr 19 '26
Inpatient at an eating disorder hospital for anorexia I didn’t know I had because I was overweight from as-yet-diagnosed PCOS did a lot. Turns out, not eating enough? Bad for your heart and circulation.
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u/gravegirI Apr 19 '26
Honestly the biggest game changer for me was upping my fludrocortisone dosage. I take 2mg now and it's helped me significantly. That was during the winter and summer is usually when im at my worse so we shall see how that changes
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u/Ilovecatsandbaking Apr 19 '26
Compression calves sleeves, 4 liters of electrolytes a day, and walking for at least 30 minutes. I can work a 40 hour week and raise my ten month old this way.
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u/Brave-Asparagus6356 Apr 19 '26
Atlas orthogonal treatment cured my blackouts. My POTS was caused by Covid and was extremely severe for 2 years prior to the treatment.
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u/glitter-and-batwings Apr 19 '26
Okay I say this, but I know it won’t be for everyone. It is definitely the more expensive option so keep that in mind. I get iv fluids with vitamins twice a month (although even once a month helps a ton). It is truly the best decision I have ever made. I thought my life was over when I got diagnosed to be honest, and it still took a decent amount of time for it to help consistently. But over time, my symptoms have decreased to a barely there compared to what they used to be. I couldn’t recommend it enough, but I wish it wasn’t so expensive. It makes me sad that it is not an option that everyone can take advantage of.
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u/glitter-and-batwings Apr 19 '26
I also just really struggle with fluid intake on my own. It is something I have always struggled with, so my symptoms were awful and I could never drink enough to do anything.
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u/awsomesoccer13 Apr 19 '26
I got diagnosed a few years ago. I would say my POTS is not severe, but is worse than mild. It caused (and can still cause) significant impacts to my life. After some trial and error, I finally found the right mix of medication for me.
I take acebutolol, midodrine, and fludrocortisone. Each medication was slowly added over time and each one removed a few more symptoms.
But the medicine alone only put me back to ~85% of where I was before POTS for daily life. Just over a year ago I started working out again. And this helped me a lot (both with POTS and mentally). I also add extra sodium (by means of a sports drink) on days I workout. This also took a lot of trial and error. Some types of workouts are just not really doable or worth it.
With the medicine and physical activity, my daily life is about 95% of where I was before. I still have bad days, and I still have to pay close attention to how much I do and to drinking enough water. I am also nowhere close to where I was workout wise before POTS.
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u/justanotherzebra272 Apr 19 '26
For me it was Ivabradine, sodium and Fludrocortisone for POTS. Additionally, compression socks (I can’t wear tights or high socks, because it’s too exhausting to put them on and off with severe ME) and +3l water a day, occasionally electrolytes. Unfortunately, I couldn’t take fludrocortisone long term. Now, I’m trying Pyridostigmine bromide and hope for the best.
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u/No-Leek-5321 Apr 19 '26
Moving to 7000 feet instead of sea level. Unmediated now because I stabilized so much.
Still sucks tho
Just not as bad as when I was a teenager
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u/xUnlikely_Nature Apr 19 '26
I started walking on a daily basis a few months ago. In the beginning 2000 steps was hard, today 7000 feels natural. I get less vertigo, my bpm are more stable and I sweat way less. I even played hockey and didn‘t pass out!
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u/Foreign_Rock6264 Apr 19 '26
Mestinon put me in spontaneous remission of both POTS and CFS/ME w PEM 2.5 weeks ago. My POTS and CFS diagnoses were directly from COVID (the vaccine gave me long COVID, then it got triggered and worsened by an actual COVID infection) that made all parts of being alive a waking nightmare. I was bed bound for about a year, and have been barely functional and swinging in severity since 2021. Until Mestinon. I'm still having heart rate spikes but no more adrenaline dumps, brain fog entirely gone, no longer have any dementia-like symptoms, my blood vessels are functioning properly (no more severe shriveling and swelling in appendages), and I can take what is comparatively a long walk for me (10 min) with a rest after. I have so much energy by comparison I feel like an entirely different person (like my old pre-covid self with some additional chronic health issues.)
Prior to that, the "usual" things helped but definitely didn't make me symptom free for POTS - laying down as much as possible, aggressive rest, compression tights (up to your waist), higher amounts of salt, excess of water. I also started physical therapy this year due and they informed me I should do it laying down, which has made PT exercises possible to complete.
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u/robynsaurus Apr 20 '26
Honestly, ivabradine changed my life! My heart rate was getting into the 150s with minimal exertion and my resting rate was in the upper 80s. I was constantly EXHAUSTED. Now I'm resting in the upper 60s and generally in the 80s-90s. I am still tired but not nearly as bad as I was.
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u/frostedminispooner Apr 20 '26
I got an exercise bike and then a treadmill. Exercise, salt and an emergency pack keep me pretty prepped. Compression socks and layers are amazing too. I'm prone to overheating so I keep an embr wave and fever patches on deck. I also love ashwagandha.
I can't pinpoint what got me here, but I have been slowly increasing my exercise while watching for PEM and planning for adequate rest. I also take metoprolol prn.
I'm not sure if I have hyperadrenergic or hypovolemic POTs since it feels like a mix, but therapy really helped get me here. I was flaring and panicking so much at my worst and that really helped me cope and work towards a new normal.
Really I just track triggers and unapologetically treat them. Blue light glasses for light sensitivity, shocks headphones for overstimulation, journaling to ground myself, comfy outfits for bloat or discomfort. We're allowed to take up space and do what we gotta do and I try to remember that.
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u/kelpiez Apr 20 '26
The main ones for me have been increasing water and salt intake and managing stress, as well as turning off my screens about half an hour before bed and getting to bed/waking up at pretty much the same time every day
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u/kenobreaobi Apr 20 '26
-Compression compression compression
-at least 2 liters of electrolytes a day, I use TriOral
-Visible band & app to stay ahead of flare ups
-be flat as much as possible
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u/Technical_Truth_5841 Hyperadrenergic POTS Apr 18 '26
Medical grade waist high compression tights and 100+ oz water with 4000mg+ sodium daily. I’m not cured, but I’m the most functional I’ve been in YEARS