My POTS Survival Kit (The Stuff That Actually Helps)

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When you’re newly diagnosed with POTS, the internet hands you a firehose. It can be overwhelming to figure out what to include in a POTS survival kit. Compression socks. Salt. Fluids. Tilt table tests. Dysautonomia forums where everyone is kind but everyone is also exhausted. It’s a lot to sort through when you’re already not okay.

I’ve been living with POTS long enough to know what I need to reach for, what I always use, and what’s been sitting in a drawer since 2021. This is not a sponsored list of things that sound good. If you want to understand what’s happening in a POTS body first, I wrote about that in my last post. This is what I do about it. This is my real-life kit — the stuff on my nightstand, in my bathroom, parked next to my couch on a bad day, and in my bag when I leave the house.

Start here. Then build slowly. You don’t need all of this at once.

Before anything else: get this book

If there’s one thing I’d put in the hands of every newly diagnosed POTS patient — and more importantly, in the hands of every doctor and family member who doesn’t fully understand what’s happening — it’s called The Dysautonomia Project, 2nd edition, by Kelly Freeman, MSM, David S. Goldstein, MD, PhD, and Charles R. Thompson, MD. I have given copies of this book to doctors. I have handed it to family members who were trying hard but didn’t quite get it. It is the clearest, most useful plain-English resource I’ve found for explaining what’s happening in a dysautonomic body and why. affiliate link

If you’re not sure what dysautonomia actually is, this post is a good place to start.

The book is the foundation, but their website —thedysautonomiaproject.org — is worth bookmarking too. It’s a useful resource for patients and the people who care for them. Definitely worth adding to your own POTS survival kit.

Get the book first. Read it. Then hand it to someone who needs to understand you better.

💡Tip: When my brain fog is too thick to process text (or anything else for that matter), I switch to audiobooks. My occupational health therapist recommended audiobooks to me because reading, one of my favorite things to do, was becoming increasingly challenging. I couldn’t focus or relax comfortably. If you find reading physically difficult or draining, especially during a flare, you can try Audible for free here.

Compression: the unsexy non-negotiable

Compression is the closest thing POTS patients have to a daily medication that isn’t a pill. The idea is simple: blood pools in your lower body when you stand, so you squeeze it back up. Compression socks and stockings help do that mechanically. For many of us, compression also helps manage edema — the swelling that comes with that same blood pooling. If your ankles look like they’ve had a long day by noon, you’re not imagining it, and compression is part of why it happens and part of what helps.

I wear SB SOX compression socks (20–30 mmHg) most days — they’re comfortable enough for daily wear and hold up well. affiliate link. On days when I need more coverage, I switch to Beister thigh-high compression stockings. affiliate link. Compression socks are a commitment to put on, especially if you’re having a high-tremor day, but on the days I need them, I need them.

I also use an abdominal binder. This one surprised me when I first heard about it, but abdominal compression helps with the same blood-pooling problem, just higher up. The NYOrtho abdominal binder is what I use. affiliate link. It is not glamorous. It works.

And then there are the days when I need to look like a functioning member of society but my legs still need squeezing. Those are the days I reach deep into my POTS survival kit. That’s where compression leggings come in. CompressionZ high-waisted compression leggings affiliate link do the job without announcing themselves — they look like regular leggings, they work like compression gear, and they’ve saved me on more than one occasion when ‘socks and a binder’ wasn’t the outfit. Getting them off, however, is not a solo operation — and I mean all of it. The leggings, the thigh highs, the socks. Steven has been yanking compression gear off my legs since approximately 2020. This is marriage. None of it comes off without a fight. Or a husband.

💡Tip: put your compression on before you fully stand up in the morning. Horizontal compression, then vertical you. That order matters more than people tell you.

Hydration: salty and then saltier

POTS patients need more sodium and more fluid than the average person. Your autonomic nervous system isn’t managing your blood volume the way it’s supposed to, so you have to do some of that work manually. This means drinking more and eating saltier.

I keep DripDrop electrolyte packets stocked at all times. affiliate link. I’ve tried other brands but I always come back to DripDrop. The flavor is good enough that I’ll actually drink it, which matters more than it sounds when drinking anything feels like a chore.

Beyond electrolytes, I’m a firm believer in salty snacks as part of the POTS toolkit. Pickles. Pretzels. No survival kit is complete without snacks, and a POTS survival kit is no exception. Salt tabs are something doctors often mention, but they’re not my personal go-to. I’d rather get my sodium in something that also tastes like food. Ask your doctor what’s right for your specific situation.

The monitors: knowing your numbers

A blood pressure monitor and a pulse oximeter are not optional for me. They’re how I know what my body is doing when it’s doing something alarming.

My blood pressure monitor is the Withings BPM Connect — it connects to an app, tracks over time, and gives me data I can actually bring to appointments. affiliate link. When your symptoms are invisible to everyone around you, having numbers is useful in about fourteen different ways.

The pulse oximeter is a small fingertip device that reads your oxygen saturation and heart rate. affiliate link. It costs almost nothing, fits in a bag, and has told me things about what’s happening in my body that I was very glad to know. I own a few.

A smartwatch that tracks heart rate continuously is worth having too. I’m currently mid-transition between devices and not ready to endorse a specific model, but whatever ecosystem you’re in — get one you trust and that alerts you. Falls happen. Episodes happen. Having something on your wrist that can flag when your heart rate is doing something dramatic is worth the investment.

💡 Tip: Set up the Medical ID on your phone. On iPhone it’s in the Health app; on Android it’s in Emergency Safety settings. Include your diagnoses, medications, allergies, and an emergency contact. First responders know to look for it, and it takes about ten minutes to set up. Do it today if you haven’t.

The rollator: the one I resisted and shouldn’t have

I want to talk about this one specifically because I dragged my feet on it, and I shouldn’t have.

A rollator is a wheeled walker with a built-in seat. For POTS patients, it isn’t primarily about walking assistance. It’s about having somewhere to sit down the moment you need to, no matter where you are. That is a different thing.

I resisted getting one because I was embarrassed. At the time, I was still in my fourties. I could walk fine, I didn’t want to look like I needed it. Then, during the early COVID outbreak in 2020 (right after my diagnosis), public spaces started pulling up benches and chairs to discourage people from gathering close together. My husband had won a one-night stay at Encore Boston Harbor Hotel & Casino. We walked in to the crowded lobby. There was nowhere to sit. I could feel what was coming and I couldn’t stop it. What followed was one of the worst POTS episodes I’ve had in a public space.

I ordered a rollator that night.

The Medline aluminum rollator is what I use. affiliate link. It folds, it’s lightweight, and it has a seat that is genuinely usable when I need to sit down right now. The embarrassment I worried about turned out to be much smaller than the relief of having it.

If you’re on the fence: get off the fence. Get the rollator.

What goes in my POTS survival kit when I go out

POTS doesn’t stay home with you, so your POTS Survival Kit can’t either. These are the things I don’t leave the house without.

Cooling cloths. Heat is one of the most reliable POTS triggers there is, and once an episode starts in public it is very hard to walk it back. A cooling cloth — the kind you wet, wring out, and snap to activate — can help bring your temperature down fast enough to matter. Keep one in your bag. Look for ones that reactivate with a little water so you can reset them if you need to.

A water bottle. This sounds obvious until you’re stuck somewhere without fluids and your body starts making its feelings known. Insulated, large enough to be worth carrying, and kept filled. Non-negotiable.

A medical alert bracelet or lanyard card. If you have a serious POTS episode in public and you can’t speak for yourself, first responders need to know what they’re dealing with. A medical alert bracelet or a card in your wallet or on a lanyard should include your diagnosis, any medications you’re on, and an emergency contact. There are many options at different price points — what matters is that the information is accurate, visible, and on your person. This is one of those things you hope you never need and will be very glad you have.

Home comfort: the things that make bad days survivable

Some days the kit is about managing symptoms. Some days it’s about getting through. These two earn their place on both counts.

Weighted blanket. There’s a real overlap between dysautonomia and anxiety — your nervous system is dysregulated by definition, and that has effects beyond the physical. A weighted blanket provides deep pressure stimulation that can genuinely calm that response. I use the Sonno Zona weighted blanket in the 20-pound option. affiliate link. It’s what I reach for when my body is loud and I need something to turn the volume down. It’s also super calming if you have Restless Legs Syndrome.

Heated throw blanket. Temperature dysregulation is a real and undertalked POTS feature. I run cold in ways that have nothing to do with the thermostat, and a heated blanket is one of the most consistent things that helps. I want multiple heat settings so I can dial it in, and an auto shut-off timer is non-negotiable — because sometimes you fall asleep, and you should not have to worry about that. The one I use checks both boxes. affiliate link. It is a comfy way to relieve chronic pain, as well. Just ask my 19-year-old furbaby Jack. Machine washable is also a quiet must-have when you’re dealing with chronic illness laundry realities.

Honorable mention – The Oodie. Think: wearable, extremely oversized blanket-that-looks-like-a-hoodie. The Most Comfortable Thing Ever. affiliate link

The supporting gear

These aren’t the headline items, but they’re in my daily life, and definitely part of my POTS survival kit.

Shower chair and tub grab bar. Heat and standing are both POTS provocations, and a shower combines both. The Medline shower chair with padded armrests affiliate link and the Vaunn tub grab bar affiliate link make showering safer and less energy-expensive. I’ll write a whole separate post about the shower math at some point, because it deserves its own space.

Bedside rail. Getting up slowly matters with POTS. A bedside rail gives you something to hold onto while you’re doing that deliberately, instead of standing up fast and paying for it. affiliate link

Under desk bike. Recumbent exercise — movement that keeps you roughly horizontal — is often better tolerated with POTS than upright exercise. The Exerpeutic motorized under desk bike affiliate link lets me move without standing, which is exactly the kind of workaround a POTS body sometimes needs.

A note on building this kit

You don’t need to buy all of this at once. If I had to pick a starting order: book first, compression socks second, electrolytes third. Everything else you add as you learn what your body specifically needs.

POTS isn’t one-size-fits-all even among POTS patients. What I reach for in my POTS survival kit might not be what you reach for in your own. But I’d rather you have a real list from a real person than a generic one from someone who read about this condition without ever living it.

You’re not imagining it. You’re not being dramatic. And yes, there are things that help.

💜 Lyn