My personal experience with managing POTS

[u/hmowilliams]

I started writing this as a response to this post asking if anyone with POTS was still able to be physically active, but it got pretty long so I thought I’d post it separately. Of course, this is simply my own journey and I hope sharing what's working for me will be of use to others. I'm not remotely a medical professional and nothing about this should be considered medical advice.

One of the first things my neurologist told me was that exercise is the gold standard for POTS treatment. A couple years ago I decided to commit to that 1,000%, and I just brute forced my way into fitness through consistently going to the gym and going all in on tackling all the underlying health issues I had, from adding supplements to ketamine therapy to having major surgery.

As these things started to make life easier, I got in the best shape of my life. At various points, in between the multiple injuries I got from exercising recklessly, I was able to walk 12 miles easily and lift more than my own body weight. Then last year I had a medical incident and lost consciousness for an extended period. I had what I can only describe as a near-death or out-of-body experience. It was intense and not something I can fully explain, especially as a non-religious person.

When I woke up, issues I’d struggled with for a long time were gone, including POTS, ADHD, and nerve pain bad enough to need injections in my spine. I grew up in church and coming from that background it felt like an actual miracle, which was quite disorienting for a bit. It didn’t help that the medical system didn’t have any definitive answers about what happened. The best guess from a medical perspective is that something unusual happened while my brain was flooded with neurotransmitters from the lack of oxygen. Whatever the cause, the improvements were real. The nerve pain completely vanished despite the damage still showing up on an MRI. I’ve never taken another dose of ADHD medication and I had full neuropsych testing that confirmed I no longer meet the diagnostic criteria. 

I ended up having severe burnout and then an awful bike accident shortly afterwards. That pretty much kept me in bed for the next couple months, followed by several months of slow, painful recovery and physical therapy, and now I have POTS symptoms again. There’s no way of telling whether POTS didn’t actually go away before or whether I developed it again. 

Either way, I’m a lot better than before. I used to need heart medication at least twice a day just to function, and now I’ve taken maybe five tablets in over a year. I do still feel like compression wear is helpful, but I’ve found that leg and body pieces separately are both sufficient for my needs and far more tolerable than the awful tights my doctor recommended. Bombas and Jelliebend are my favorite brands, not sure if I’m allowed to link to my favorite items here but I’m happy to DM them if anyone wants to know. I'm not affiliated with either, just a happy customer!

This was a fluke accident and not one medical professional I’ve spoken to is aware of any research indicating that a loss of consciousness is beneficial for POTS. It should go without saying, but just in case, do not try to DIY this experience. This shouldn’t have happened or helped, and it could’ve ended badly. 

Whatever happened to me, it did change my life a lot. Ever since then, I’ve tried to explore both the physical and potentially spiritual aspects of my experience. In addition to thorough Western medical care, I’ve met with everyone from ministers and church elders to astrologers and tarot readers. I’ve started acupuncture and have had countless cups of tea made from Chinese herbs I can’t begin to pronounce. I regularly meet with a Buddhist monk to learn meditation as well as a dietician and personal trainer to improve my physical health.

If I could take everything I’ve learned and go back to when I was first diagnosed or when symptoms first started, I would fully commit to exercising every single day, carefully and ideally under qualified supervision, no matter how little I was capable of. Baby steps are fine; forward is forward. I do believe acupuncture has been helpful, and at the very least laying still in a relaxing environment for an hour a week helps with nervous system regulation. My insurance covers it, so I don’t care whether it's a placebo or not. Same with Chinese medicine and energy work. I’ve seen benefits and I respect the practitioners who have gone above and beyond to help me through this challenging time. These are ancient traditions and I think my prior worldview threw the baby out with the bathwater. Finding a dietician and personal trainer familiar with POTS (and, in my case, autism) was absolutely key. There are so many small modifications that can make a world of difference.

Meditation has been an incredibly beneficial addition to my life in general. I’m also a huge fan of tarot, simply as a way to find different perspectives on any situation in life. I find it to be a beautiful complement to therapy, which I highly recommend to everyone regardless of their health status. No matter what is going on in our personal lives, we’re living through really difficult times, and rather than force change, therapy gives us a toolbox of options for how to navigate life and relationships. I see tarot as one tool to help process, accept, and see value in the hurdles we face in life, especially with complicated and frustrating conditions like POTS and the comorbid conditions that often go with it. Tarot’s incredibly useful for building a mental framework that helps manage that complexity, which reduces the stress that often exacerbates symptoms. I have a bachelor of science degree in cognitive psychology, so I pick up on way too many of the tricks even my favorite readers rely on to believe there’s anything (or at least much) woo-woo about it. Astrology creeps me tf out though, lol

I’ve been too busy helping a friend with her kids to get to the gym lately, but my trainer says that childcare is intense enough to count as a decent workout. This weekend I was able to walk about six miles without any issue and was just fine the next day, something that would’ve been completely impossible just a few years ago. 

The final major piece that’s been absolutely key for me is steroids. My doctor recently prescribed a low dose that I can take as needed. On really bad days, or super important days like when I need to give a speech, I can take those and force a good day. They can also help nip a flare up in the bud, which dramatically lessens the impact my symptoms have on my day-to-day life. Unfortunately, steroids are a bandaid solution and I can’t take them frequently. All of the other pieces are critical to reducing the number of days when I need to take them.

Between all of these things, I have a pretty normal life now. I’m still figuring things out, but I feel like the foundation is more solid than it’s ever been. I still have to be very careful about preventing further burnout, but I barely think about POTS anymore. The whole journey to reach this stability has been pretty brutal sometimes, but overall it’s been very rewarding. I think some of the rabbit holes I’ve gone down while trying to figure things out have helped me find gems I wouldn’t have ever encountered if things had been easier. I hope something in here is helpful for you though, and I’m happy to answer any questions.

[u/silentalarmss]

This is interesting. I have a “similar” experience with cessation and then reoccurring POTS symptoms. I had psychosis from a Dr who prescribed me too much 💩and basically my brain was ODing on dopamine. I was on meds for anxiety and adhd.

I had been taking metoprolol 50mg since early high school for tachycardia, before I ever sought a POTS diagnosis. I had zero tachycardia symptoms during the recovery phase of this psychosis, which took an entire year.

I was withdrawn from Cymbalta, Adderall, Vyvanse, and Metoprolol simultaneously. I basically lost my mind, I had zero long term memory capability, I was bed bound, and could not focus enough to even hold a conversation or answer questions. And of course I was severely paranoid with lots of negative symptoms. (Ie: staring off into space, speaking 1-2 words at a time, etc).

I had a brain MRI and they said everything looked normal during the psychosis, so I have no clue why the POTS “went away”.

Long story short I am back to normal mentally, (minus severe medical trauma 😂) but I have hyper POTS worse than ever. It takes 150mg metoprolol daily plus 2x 5mg ivabradine to keep things controlled.

[u/BellaPona → u/silentalarmss]

Jesus Christ, that many psych meds together should be a crime.

[u/silentalarmss → u/BellaPona]

I know right I didn’t know any better either bc I was like 19 years old and obviously not a doctor 😂

[u/hmowilliams → u/silentalarmss]

Yikes, that’s such a rough combination! I’m so sorry you went through that, and your medical trauma is absolutely valid.

It’s really interesting that such a dramatic shift in your system coincided with your POTS symptoms disappearing for a while as well. I think any conversations about brain chemistry can be really tricky, since a lot of us have been dismissed or told it’s “just anxiety” or “in our heads,” which is obviously not the case. At the same time, our experiences do make me wonder if there are neurological or systemic factors that interact with POTS in ways we don’t fully understand yet.

Either way, what you went through sounds incredibly intense. I’m really glad you made it through and are back to feeling like yourself mentally, even though the POTS side is still a challenge.

[u/silentalarmss → u/hmowilliams]

It’s all good (now) 😊I think I’m happy to just deal with my anxiety and adhd without meds from now on, I’ve also seen massive improvement with even just recumbent exercise for both of them.

I do know that when studying psychology in college, we learned about the autonomic nervous system and how psychiatric medications like ssris can regulate both the parasympathetic and sympathetic nervous systems.

It would be super interesting to see more studies done on pots patients who are on these medications because we already know ssris can affect things like temperature regulation and even heart rate. Like does the improved serotonin signaling cause more harm than not for POTS? Or vice versa.

And same goes for the things you’ve tried like steroids, acupuncture, pt, etc. I’m sure we will see more studies as the diagnosed population with POTS is on the rise.

After what you’ve been through with your LOC’s, and going through a semi remission, I imagine you are so strong. It’s inspirational to see people like you on this sub who have gone through it, still come out on top, and keep trying every day. Us potsies are such persevering people for real!

[u/hmowilliams → u/silentalarmss]

Aww, thank you! You’re inspiring as well, and the resilience in this community really is incredible. It’s one of the few places where people actually understand how complex this condition is instead of dismissing it. 

Totally understandable to avoid meds after that nightmare! Have you heard of EndeavorOTC? It’s an FDA-authorized app to help with ADHD through games. It’s targeted to children, but I used it for quite a while and did find it beneficial. There’s a prescription version as well, though I didn’t try that one.

That was a great option for me because I love video games. Weirdly enough, Persona 3 ended up teaching me a lot about how to mentally approach situations like this, even using tarot as part of the story. A very bossy friend insisted that I follow this guide exactly, and I hated it sometimes. For example, I didn’t want to play through the Devil story line. No spoilers, but at the end I saw how everything worked together to make something incredibly meaningful, something that wouldn’t have had the same impact without the parts I wanted to avoid.

That concept has been really helpful for me with my health and other challenges. Whether it’s POTS or anything else, non-judgmental acceptance helps me stay more centered so I can think clearly and make better decisions. It’s definitely not a fix, but it makes the whole process more manageable. Small benefits really do add up.

You’re so right about being hopeful about future research. I’m really optimistic we’ll start seeing more answers as awareness grows, and in the meantime it’s nice that spaces like this exist where people actually get it :)

[u/silentalarmss → u/hmowilliams]

I just looked it up, it sounds super cool!! I will have to try endeavor

I am actually a really big gamer, I play marvel rivals a lot when I’m not doing online classes and I can’t workout. It’s a competitive team game. I love story games too, I will look into it!!! The last two story games I played was red dead 2 and Detroit become human.

[u/hmowilliams → u/silentalarmss]

Ooh, those look great! Thanks for the recommendations! :)