Basically, I'm asking what the title says. What unusual ways do you get your electrolytes? What helps those ways to work?

I'll start: sometimes I full-on eat bits of vegetable base ("boullion alternative", the stuff you add to water to make soup or broth). It's 700mg of sodium per teaspoon. I actually like the taste too!

Well, my partner did :)

Between the ableism and the fact it had been making me feel weird for awhile, I'd stopped using LMNT. (Big thanks for the redditor who shared about the vasodikation effect of stevia, that thread really connected some dots for me).

I'm in the UK, and was really struggling to find something with the same sodium content, that didn't have a ton of extra vitamins, came in sachets for easy use AND didn't have stevia.

But then my partner did! It's from PROMIX.

PROMIX Electrolyte Drink Mix (unsweetened) has

• 1000mg sodium
• 200mg potasium
• 60mg magnesium

Pretty much the same price point too.

Just got one pack to try out, and it's really chill. I got the unsweetened watermelon flavour.

Peace everyone. Remember to stand up slowly. God knows I don't.

Full disclosure: I am not affiliated with Supacore, nor do I get any incentive for writing this. I’m just someone with POTS sharing a product that made a real difference for me!

The Products
I’ve been wearing these two products for about a month now:
Shorts: Patented Mary Women's CORETECH® Postpartum/POTS Recovery Shorts
Leggings: Patented POTS CORETECH® Black 7/8 Leggings with Pocket

Why I Love Them
Targeted Compression: They compress correctly for POTS management rather than just feeling like regular tight athletic wear.

Noticeable Symptom Relief: I've noticed a huge reduction in my pre-syncope symptoms in particular while wearing them.

100% Opaque: They aren't see-through at all and are meant to be worn on their own.

Versatile (Especially the Shorts!): I practically live in the bike shorts now that it is summer. I wear them on their own or layer them under dresses and jean shorts. I was pleasantly shocked by how effective they are even without full-length coverage.

No Compression Sock Fatigue: A great alternative if you hate wearing traditional compression stockings or socks. I actually think the compression is superior.

The Drawbacks

Price: They are definitely an investment/expensive (though worth it if it's within your budget).

Shipping Time: It took almost a full month for my order to arrive (I’m located in the US).

Final Thoughts
Finding gear that actually helps manage POTS symptoms is tough, so I wanted to pass this along. If they fit your budget, I highly recommend giving them a shot. I believe they have a solid return policy if they don't work out for you.

Hope this helps someone out there!

I currently have an Apple Watch (3 years old) and perhaps there’s something I could or should be utilizing for alert systems but I’m not techie.

Would something like the visible band or oura ring be able to give me an alert about stress level or heart rate before I’m suddenly having pre-syncope seemingly out of nowhere?

I’m ok with paying for any sort of subscription for peace of mind or getting an app to add to my Apple Watch. It seems like visible has been a great tool for many with the real time HR tracking. I also am having pelvic/gyn issues that seem to correlated, luckily found a lovely and very informed specialist who will be assessing for pelvic congestion and adeno.

Context for ask: I haven’t had a severe pre-syncope event in over two years now (I still struggle but luckily have gotten to know my body well enough to do what helps). Today I was in the car with my kids and what felt like completely out of the blue, I went into a full pre-syncope event while driving. Luckily/ironically I was on the way to the hematologist (for my low ferritin I very much need an infusion for), pulled up to the ER and yelled for help and told them my kids were in the car. I’m tearing up writing this because having my kids in the car while it happened made me horrified and think of the worst that could happen. I’m very lucky that my body is hyper resistant to fainting even at very low BP (lowest recorded standing at the doctors required two nurses manual and was 52/28, they were horrified, I was so Ill I didn’t have time to be)

https://i.imgur.com/DeaIlQu.png

These brands are probably fairly US-centric as that's where I'm based. I wanted to create a spreadsheet showing price per gram of sodium because it can be pretty hard to figure out what you're actually spending when you're just going off of price per serving

Note that for the Buoy prices those are the CHEAPEST you can get them for (chronic illness discount + subscription price), so the cost per gram of sodium only goes up from what's on that chart.

If you guys have any brands you like that I don't have listed here please let me know (especially any that DON'T use stevia, which I hate) so I can add them :)

Recently I saw JH pots clinic. Dr. Chung is the medical director of the clinic and he gave a very in depth explanation of pots.

Chart Notes below:

I explained the pathophysiology of POTS/dysautonomia to the patient today. While the exact pathophysiology of POTS is not well-understood, it is accepted that there is underlying autonomic nerve dysfunction, and as a result, there is a failed regulation of blood circulation. In particular, sympathetic nervous system innervate to blood vessels, and act as a "pump" for blood circulation. This sympathetic "pump" gets activated when each body tissue needs more blood for its action. For example, when we exercise, the sympathetic nerve pumps blood and increase circulation to the muscles that are being used. Or when we use our brain to focus and study/read, the pump sends more blood to the brain. Also, when we sit or stand up, the sympathetic nervous system pumps circulation against the gravity, so we don't drop our blood pressure.

Basically, the denervation (=nerve dysfunction) of sympathetic nerve is thought to be an important mechanisms of many POTS sympotms, and I refer those symptoms as "pump failure" symptoms. For example, patients experience brain fog or lack of concentration, when circulation doesn't reach the brain in proportion to the level of brain activity. POTS patients commonly complains of muscle pain and exercise intolerance, because sympathetic pump fails to increase circulation to meet the metabolic needs of muscle contraction. In fact, the circulation to muscle can be reduced during exercise in POTS patients. Other pump failure symptoms include severe fatigue, orthostatic dizziness, and migraine headache. In my experience, these symptoms explain why many POTS patients are debilitated.

At the same time, the central regulator of autonomic nervous system, which is in the hypothalamus in brain, is intact in POTS patients, and senses that the sympathetic pump is not working. Therefore, in an attempt to compensate for the sympathetic dysfunction, the brain (hypothalamus) paradoxically activates sympathetic nervous system, causing tachycardia and sometimes high blood pressure, to "squeeze" more blood. This central activation tips off balance between sympathetic and parasympathetic nervous system, and causes many "fight or flight" symptoms. This "sympathetic overcompensation" symptoms include anxiety, nausea (with or without vomiting), tachycardia, palpitation, sweating, and sleep disturbance. While the sympathetic activation is somewhat necessary to compensate for the pump failure symptoms, those sympathetic symptoms themselves can be very uncomfortable.

The "pump failure" symptoms and "sympathetic overcompensation" symptoms interact with each others, and sometimes initiates a vicious cycle. For example, dehydration worsens pump failure as there is not much volume. The worsened pump failure will further activate the hypothalamus to increase sympathetic system, which causes severe nausea/vomiting and loss of appetite, limiting PO intake of flew-ids. This limited PO intake will further worsen dehydration, which will eventually start the vicious cycle.

To make it easier to handle the problems, I tend to classify all the POTS symptoms into two categories: 1. Pump failure and 2. Sympathetic overcompensation. While there is no "cure" for POTS yet, there are multiple options we can try to improve the symptoms of POTS.

Regarding the pump failure, while there is no fix for the pump, one can attempt to expand the cardiovascular system to build up some pressure. This approach is called volume expansion, and in my experience, most POTS patients respond most dramatically to volume expansion. I discussed in detail today how to achieve the volume expansion. Oftentimes, I arrange weekly flew-ids as outpatient until they can function better and start a physical therapy. Eventually, physical therapy and a gradual cardiovascular training will allow our skeletal muscles to act as the pump.

Regarding "sympathetic overreaction symptoms", I am being careful with this approach as some of this actually helps you maintaining some function. In fact, powerful sympatholytic medications (such as high dose beta blockers) can even worsen pump failure symptoms, although those medications are sometime necessary. My first choice of drug in this category is the medication called "Marinol (=dronabinol)", which is a synthetic cannabinoids. This helps a lot with nausea/vomiting, and sleep issues. Basically, this medication works by enhancing the parasympathetic system to balance off sympathetic overcompensation. In addition to the drug, there are some psychological techniques, called "mindfulness "; these techniques are very similar to meditation, and can be very powerful in enhancing the parasympathetic system, while suppressing sympathetic system. There are also various other medications in this category, and we may use some of them based on your symptoms.

We also talked about the association between POTS and other syndromes. POTS is also known to be associated with hypermobile joints (sometimes, EDS), SIBO, IBS, and mast cell activation syndrome (MCAS). Some POTS patients have strong family history, and thought to have developed POTS from a genetic mutation. Regardless, I believe most POTS is an autoimmune disease, and immune medications, such as IVIG, can be potentially used in those patients. The prognosis of POTS is not well known, although the severity of symptoms fluctuate over time.

Plan The aim of volume expansion therapy is to increase the amount of flew-id in your bloodstream, known as "blood volume." While there are various methods for achieving this, it typically begins with increasing your intake of water and sodium by mouth. When drinking water for volume expansion, it's important to do so efficiently. Your body constantly removes water through your kidneys, so drinking slowly won't effectively increase your blood volume. We recommend drinking 0.5 to 1 liter (approximately 16 to 33 ounces) of water as quickly as you can tolerate. You can repeat this every 2-3 hours while you're awake, aiming for a total of 3-4 liters per day. However, if you have gastrointestinal issues, such as difficulty moving food through your digestive system, proceed with caution. To ensure the water you drink is absorbed into your bloodstream, you need to add sodium because your blood contains high levels of sodium, and water follows sodium. For every 0.5 to 1 liter of water, it's recommended to add at least 500mg to 1000mg of sodium to your drink, totaling 3000 to 4000mg of sodium per day. Simply mixing sodium into your water won't allow your gastrointestinal system to absorb the water effectively and can lead to diarrhea and dehydration. To facilitate absorption, add glucose (sugar) to your saltwater mixture. A typical ratio is 1000mg of sodium and 6.25g of glucose in 250ml of water. This is called oral rehydration solution (ORS), and you can find the exact recipe online. While you can make your own ORS based on the recipe, it may be challenging to prepare this at home, so we suggest using commercially available products like Liquid IV, Trioral, Dripdrop, or Pedialyte. As you continue working with our team, we'll help you optimize your intake of water, sodium, and glucose by mouth. It's important to keep a medical journal to track the amounts of water, sodium, and glucose you consume, as well as your drinking schedule. This will help us tailor your treatment plan to your individual needs effectively.

It's essential to keep an eye on your blood pressure and heart rate every day. These numbers naturally fluctuate throughout the day, so it's best to check them a few times daily, like in the morning, mid-day, and evening. You can use a commercial blood pressure cuff or a smartwatch for this purpose, but it's important to note that they may not always be super accurate. If you notice any readings that seem unusual, it's a good idea to take them again just to be sure. Keeping a record of your numbers is incredibly helpful for us to review during your follow-up visits. There are plenty of free apps available that can help you keep track of your blood pressure and heart rate conveniently.

Please let us know if you are interested learning more about ongoing clinical trials for post-COVID POTS.

I agree with trying subcutaneous immunoglobulin.

Edit: Wanted to say that Dr. Chung did also mention PEM & stated that it was common with exercise intolerance. He touched on the topic very lightly, so I do not know the depth of his knowledge on it. ME/CFS was not mentioned. But he did go through a power point of graphics with me explaining all the above information. It was very thorough.

When i went to Costco last week they had Kirkland brand electrolyte powder. It’s currently on sale for $20 for 40 tubes; lemon lime and strawberry watermelon.

I took pics so you can see what’s in them but don’t see the option to post pics here. Hopefully I can add them in comments but if I don’t post now, I’ll forget again.

... as too much iodine can be harmful for your thyroid.

Hi! So I upped my salt intake significantly due to POTS, mostly doing homemade electrolyte drinks using plain salt, some potassium citrate and lemon for a flavour. Then, about a month ago, I was diagnosed with hypothyroidism due to Hashimoto's disease. I was surprised by that as just 7 months prior my thyroid labs were normal. So I searched for potential triggers and it turns out it's often due to iodine overload. Most salt in my country is iodized, so it probably played a role.

This is not here to scare you. I've read conflicting things on how common Hashimoto is - some say it's 1-5 %, other resources say it's the leading cause of hypothyroidism in the developed word - and hypothyroidism is actually pretty common. I just figured, it's better safe than sorry :) Also, I'm not saying avoid all iodine. It's added to the salt because otherwise most people would not get enough and that would cause other issues. But because we purposefully consume unusually high amounts of salt, it may be better if the extra amounts do not contain iodine.

Hope this is useful to someone :)

Hey everyone,

My husband recently pulled together information from several articles on POTS and turned it into a free booklet called Living with POTS

We wanted to share it here in case it helps anyone who’s newly diagnosed, struggling to find clear information, or looking for something to share with family and friends.

Download the booklet here:
👉 Living with POTS (Google Drive link)

What’s inside:

• How to make sense of confusing or invisible symptoms
• Navigating the medical system (and avoiding dismissal or gaslighting)
• The main treatment pillars and how they fit together
• Practical management tips for daily life
• Hope, identity, and emotional resilience
• Sections for family & friends

If you’re newly diagnosed, there’s a “Just Diagnosed?” section to help you start, and if you’re a caregiver or friend, there are sections that can help you understand how to best support someone with POTS.

We hope this helps make living with POTS a little less confusing and a bit more hopeful 💙

Did yall know one 11oz can of regular v8 has over 900mg of sodium? I didn’t. But I recently discovered it after ordering an airplane Bloody Mary and reading that can.

Anyway. It’s now in my fluid rotation. It feels like a treat compared to boring water.

I was scrolling through Costco online and found they have a 15 pack of the LMNT cans which are the sparkling ones I think for $30. Just wanted to let anyone interested know they were there. I find them more palatable than the powder packs. A 4 pack at Target is $11.

Hello,

I was wondering if anyone can recommend a consultant or cardiologist in London with expertise or at least an understanding of POTS? Preferably close to London Bridge but anywhere in the city would be good too.

They don’t have to be NHS-based at this stage, anything will be considered.

Many thanks!

(P.S. I hope this post is OK… I couldn’t see anything in the rules saying it wasn’t but apologies if I missed it!)

https://petition.parliament.uk/petitions/781751

"The Public Order Act 1986 protects against publishing content that incites hatred based on race, religion and sexual orientation. Under this legislation, disability is not currently protected in this way and it may be legal to publish content, regardless of how harmful the rhetoric might be to the disabled community."

The reason why we get articles like "how having a disability became cool" in the Telegraph is because the Public Order Act doesn't protect us. This petition hopes to change that.

This breakdown is a massive oversimplification but if you can’t afford a specialized trainer/coach, or can’t go to the gym (for whatever reason) here’s a way to get started by meeting yourself where you’re at right now (from a certified master trainer who specializes in disability and chronic illness coaching because I, myself, am also disabled and chronically ill) lets be honest, the CHOP protocol doesn’t cut it for a lot of us

Firstly: Ingest more protein, pick foods that will get you eating and enjoying the idea of eating, then add your nutrients (fiber, fruit and veg) to those foods. Frozen or fresh veggies added to frozen meal kits and keeping smoothie ingredients on hand are two of my favorite more accessible ways to increase nutrient density in my diet.

Secondly: as far as “working out” do exactly what you can without flaring (chair yoga, walking, 5 min YouTube follow alongs, soup cans instead of weights, etc. Find what you can do where you’re at right now and do it) then make it a point to do that as consistently as you possibly can. After a few weeks at this level of exertion you should hopefully level back out. Do another week or two at that same level then up it by 1, or 1/2 or, 1/8 and repeat.

It’s hard AF and you WILL have some minor inflammatory reaction as you recover. So, thirdly: Focus on your recovery tools throughout this as if it was MORE important that the workouts! (Foam rolling, massage, naps, mobility exercises, TENS unit, epsom soaks/lotions, tiger balm/bengay or whatever creams you prefer, alternating ice and heat, resting when your body says it needs to, etc)

Mentally prepare to have to work 10x harder than everyone else just to maintain what you have. It’s a real shit hand to be dealt but when it’s the only hand you get, you play the hell out of it.

For anyone who needs to sit while showering but cringes at the typical medical-looking options - IKEA got us covered!

Their BÄSINGEN shower stool actually looks like a normal piece of furniture. I was so excited when I found it because honestly, all the standard shower chairs are just... depressing to look at.

Haven't picked one up yet, but it's definitely going in my cart next trip!

I have tried to post this four​ times! ​I don't know what the filters problem is!​​​

Edit: I have posted in the comments

This might be common knowledge or common sense to some, but be careful which cold and flu medication you take!! I just found out today that most OTC medication contains pseudoephedrine and/or phenylephrine which can greatly exacerbate symptoms. Obviously it's not the case for everyone but something to consider

I had no idea and only found out today after I've been taking them and have had a serious flare up which has made me feel even more ill.

Heres a source but there's lots of other info online:https://chronicallysalty.com/2018/06/12/got-a-cold-with-pots-5-tips-for-a-faster-recovery/

Does anyone have any resources or tips/tricks for health anxiety? I’ve had POTS for 10 years and recently started having health anxiety specifically around trying new medications and my heart rate. Thanks!

Hi, friends. Recently, I sat in a hot car for about 10 minutes with the windows down while my mom went in to get smoothies in a shop. This was overall a bad idea, it seems, as I then was nauseous and nearly throwing up for 3 hours and in a hot flash episode despite ice packs under my arm pits. I basically had to be without clothes and blankets and in full AC to calm my system back down. This raises concerns about my upcoming plans for Pride... I don't want that to happen to me again. I see wrist packs, neck cooling devices like wraps and ice rings, but the reviews are so hit and miss.

Anyone able to offer any trusted advice on how to keep cool or products to keep you cool besides load up on salt/drink your water/electrolytes/dress in breathable clothes?

I don't know how many people know about these, but no-rinse shampoo gloves are an easy way to wash your hair quickly. They're made to be very gentle on your hair, but still get it clean. It's probably not as effective as a full shampoo/conditioner routine, but if you can't shower it's something at least. I buy mine at the retail pharmacy I work at (they're with the incontinence supplies and durable medical equipment section in my store), but I'm sure they're able to be bought online. Just wanted to let people know about it because I know a lot of us struggle with showering, especially when you gotta put your arms over your head.

There's also no-rinse soap, which is the same concept. You apply it to your skin, then use a towel to dry yourself off and remove any dirt. It's also in the incontinence aisle at my store.

I've found both of these to be super helpful and I hope they can help other people :)

I am looking for a pair of compression leggings preferably with some lower abdominal support that I can order that are $55 or less. I really like the Jelliebend ones, from what I see on their website, but I don't have $115 to spend on them. Anyone have any that really work for you that you'd recommend?

Has anyone tried the Korform ones or some of the ones on Amazon?

was wondering if anyone had any good apps for tracking symptoms that don’t rely on LLMs/AI?? just an easy, all-in-one-place way to keep track of when i’m flaring would be nice, but every app i’ve seen so far includes some sort of LLM/chatbot situation.

My long covid specialist Dr Graham Exelby has some really great peer reviewed studies and articles. I highly recommend reading through them and sharing with your doctors! Here:
MCMC Research

Hi. I was finally diagnosed with POTS after trying to find an answer for many, many years. I'm 17, have a fairly active job and go to school. Medication has brought my symptoms and heartrate down significantly but I still have flares frequently and "medical emergencies" where I go to my doctor– often having to leave work or school mid day.

I definitely need one to get home after work. I can't use one AT work as I'm a waitress and would probably get fired. At school, I have been considering a walker mostly and perhaps a cane for the days where I feel good. I also considered a wheelchair as my worst trouble is the fact that I can't breathe well whilst standing and my body feels extremely heavy, but wheelchairs just seem so... dramatic?? The cane and walker would at least lessen my fall risk, which I do tend to stumble around and fall a lot.

I don't have anyone to roll me around on the days where even sitting upright makes me feel faint, so a normal wheelchair where I'd have to push myself around seems pointless if I was to get one. I was considering a transport walker where it can turn into a wheelchair– then again, who would roll me around?? An electric wheelchair seems TOO DRAMATIC but I guess that is the best option unless someone has a better idea. I'm genuinely out of ideas haha.

I have also been considering quitting my job because the high activity is becoming overwhelming, I've collapsed a few times. I really can't, though, as I am mostly independent and need the money for my driver's license and other things that financial support can't cover. (for example the mobility aids haha)

Please help. I'm terrified of how it will be received at school, especially because last year I was moving around just fine outside of having the elevator keycard. I will definitely have days where I'm just walking IF I do get a wheelchair, and I know this is something that will start a ton of rumours. Still, if I was to get a mobility aid, now would be the best time, as I get a 90% discount for being a minor.

Overall, my functioning ability seems to be getting worse over time, so I am also trying to consider what I might need in the future.

I don't know what to do anymore. I uncontrollably sob before I go to work because I'm so exhausted but I have no choice, I can only manage short shifts and I've had to call out multiple times, Ive been fired twice in the past 6 months, Ive passed out on the job. I started doing sketchy shit for money. It's ruining my life. I've been running on fumes for so long and I can't do it anymore. It's either work myself to the bone with my disability or let my loved ones down. My dad has told me things like I'm just not used to having a job yet and "being an adult", that it's supposed to be this painful. I shouldn't be to the point of not wanting to be here because I physically feel so terrible. I don't want to do this anymore. I don't even have health insurance and being in America, I might as well just call it here.