Taking Control of POTS: A Beginner’s Guide from someone that has been there and still is.
One of the biggest questions I get asked is, “How did you take control of your POTS and get out of the wheelchair?”
I wish I could give you one simple answer, but the truth is that POTS looks different for everyone. I have friends with POTS who can’t handle cold weather, while for me, it’s heat that completely knocks me out. What wipes me out may not affect you at all, and what affects you may not affect someone else. That’s part of what makes living with POTS so frustrating.
I also want to be real with you. When I was first diagnosed, I had no idea what I was doing. I was active duty in the Air Force, my life flipped upside down, and I didn’t have time to stop and question everything doctors were prescribing. At one point, I was on 17 medications a day. Many of them made me feel worse than the POTS itself. Today, I’m down to just one medication, but it took years of trial, error, and learning to advocate for myself to get here.
If you’re newly diagnosed or just starting to figure this out, this guide is for you. These are the steps that helped me move from survival mode to actually living again.
What is POTS?
POTS stands for Postural Orthostatic Tachycardia Syndrome. The most common way it’s diagnosed is when your heart rate increases by 30 beats per minute or more within 10 minutes of standing (40 bpm in teens), without your blood pressure dropping. That’s why so many people feel dizzy, lightheaded, and like they might faint when they go from lying down or sitting down to standing. It is a disorder of the autonomic nervous system, which controls things your body usually does automatically like heart rate, blood pressure, and digestion. I often tell people, “My body forgets to do the things it is supposed to do without me thinking about it.”
Knowing that your symptoms have a name and a measurable pattern can take away a little of the fear and make it easier to talk to doctors.
Step One: Find the Right Doctor
POTS is complex, and not every doctor is trained to recognize or treat it. That’s why finding the right doctor is so important.
Some people have great success with a primary care doctor who’s up to date on POTS. Others, like me, find the best help with specialists. I was first diagnosed by a neurologist, but the doctor who helped me make the most progress was an electrophysiology cardiologist.
You are allowed to ask a doctor directly: “Do you have experience treating POTS patients?” If the answer is no, keep looking. You are not stuck. You can walk out. You are allowed to find someone else. The right doctor can make the difference between just existing and actually improving your quality of life.
Step Two: Learn Your Body
This step was the hardest but also the most life-changing for me. When I committed to learning how my body responded, that’s when I started to take my life back.
I journaled for an entire year. Here’s what I tracked:
How I felt when I woke up. Did I have brain fog? Did I feel disconnected? Any strange sensations?
The weather. Did changes in temperature or storms affect me?
Food. What I ate, when I ate, cravings, and how I felt afterward.
Activities. Grocery shopping, workouts, errands. Did I feel worse right after? The next day?
It sounds like a lot, and honestly, it was. But it gave me patterns that no doctor could have figured out on their own.
For example:
If I woke up with numb lips, I knew I was headed for a bad day.
If ringing in my ears started with numb lips, I was about to pass out.
If I pushed myself on a hot day, I could count on the next two days being a struggle.
By the time I brought this journal to my cardiologist, we could finally see what was really happening. I wasn’t dismissed as “anxious” or “hysterical” anymore because I had evidence.
If you want a place to start, I created a document you can download and start journaling your body. Get it HERE
Step Three: Basics That Help Most People
While every POTS patient is different, there are a few things that are commonly recommended and worth trying (with your doctor’s approval):
Hydration: Aim for 2 to 3 liters of water per day.
Salt: Many patients benefit from increasing sodium intake, unless told otherwise by their doctor.
Compression: Stockings or abdominal binders can prevent blood from pooling.
Exercise: Start slow with recumbent bikes, rowing, or swimming, and build gradually.
Sleep: Elevate the head of your bed by a few inches.
Temperature awareness: For me, heat is my kryptonite. For you, it might be the opposite. Learn your triggers.
Food: Some people feel worse after big meals, so smaller, more frequent meals may help.
For me, one of the most important tools I discovered was making my own electrolyte drinks. Drinks like Gatorade didn’t help me at all, but when I started using recipes I found online (simple mixes with water, salt, and sometimes fruit juice or coconut water), it was a game-changer.
These aren’t magic fixes, but combined with learning your body, they can make daily life far more manageable.
Step Four: Advocate for Yourself
If I could give one piece of advice to anyone with POTS or any chronic condition, it would be this: become your own advocate.
Doctors don’t always know everything.
You do not have to settle for the first opinion you get.
You are allowed to disagree when you know they aren’t listening.
You are allowed to walk out and find someone else.
At the height of my illness, I accepted everything doctors told me without question. That’s how I ended up on 17 prescriptions. Looking back, I wish I’d spoken up sooner. Now, I question, I research, and I bring my own data. And I live a better life because of it.
Step Five: Plan for the Unexpected
Even after years of managing POTS, I still have random days where my body says: “Nope, not today.”
Canceling plans still breaks my heart sometimes, but it happens far less often now than it did in the beginning. The difference is that I’ve learned to plan for it:
I schedule rest days after big activities.
I keep electrolyte packets and water with me everywhere. (yes I prefer home made but those are great in a pinch!)
I build flexibility into my week so a “bad day” doesn’t completely derail me.
POTS is unpredictable, but it doesn’t get to dictate your entire life.
Step Six: Don’t Forget Your Mental Health
Living with an invisible illness can be isolating. Doctors can dismiss you. Friends and family may not understand why you “look fine” but can’t function. It’s not just physical, it’s emotional too.
I’ll be honest: I struggled with the stigma. I hated being told it was “all in my head.” Having friends with POTS who understood the ups and downs made me realize I wasn’t alone. Therapy, support groups, and simply talking openly about it have made a huge difference.
You don’t have to carry the mental weight by yourself.
Step Seven: Safety and When to Seek Care
Most of the time, POTS is not life-threatening, but there are times you should get medical help. If you faint and injure your head, experience sudden chest pain, or develop new neurological symptoms, do not assume it’s “just POTS.” Call for help.
Knowing the difference between your normal flares and something more serious is another way to advocate for yourself.
Final Thoughts
If you take nothing else from this, let it be this:
You can live with POTS.
You can build a life you’re proud of.
You are stronger than you think.
It takes patience, planning, and a lot of self-advocacy. But it is possible to move forward and not feel completely ruled by this condition.
I’ve walked this road, from a wheelchair, through over-medication, to learning how to take control. You can, too.
Additional Resources
If you want to dig deeper, here are some trustworthy places to start:
Disclaimer: I am not a medical professional. The information shared here is based on my personal experience living with Postural Orthostatic Tachycardia Syndrome (POTS) for over 10 years. These are suggestions, tips, and strategies that helped me take back control of my life and transition out of a wheelchair. This content is intended for informational and educational purposes only. It should not be used as a substitute for professional medical advice, diagnosis, or treatment. Always consult with your doctor or qualified healthcare provider before making changes to your medical care, lifestyle, or treatment plan.
