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What I Wish I Knew When I Was Just Diagnosed With POTS

Updated: Jun 7, 2022

The transcript can be found under the video.

This is what I wish I knew, and I could go back and tell myself, and I hope that it'll help you on your journey now as well.

When I was first diagnosed, I was overwhelmed. I didn't know what to do. I had no idea where to turn to. I didn't even know what was the best way forward. There were also several other symptoms, tests, and diagnoses coming up. It was just so overwhelming. So I wish in the beginning, someone had given me some sort of map or at least even a big picture idea of what to do.

Where do I go next? What do I do now? But through a lot of trial and error and time and research and years, I did get better.

Medication Is Not Remission

So when I was first diagnosed, I was given beta-blockers, and I eagerly took them.

When I was first diagnosed, I recall seeing Facebook groups where individuals said things like, "Oh, now I'm taking medicine, and I'm in remission." And I was ecstatic because I assumed it meant the same thing to me. I would take beta-blockers and then be in Remission again. Right before I started taking them, I would have incredibly terrible chest spasms whenever I took a walk outside or was slightly upright and it was warm.

So as soon as I was on beta-blockers, I was able to go out for a brief walk around the area where I lived. And it was warm outside, just a little bit warm.

It was a spring day, and I was actually able to go out and stand upright and go off for a walk. So I remember thinking, "Wow! This is so amazing. I'm on the road to remission. Everything is amazing." The first few months were amazing. I was able to go back to work. I was able to take walks. I think I was even able to go to a grocery store again.

Don't get me wrong, it wasn't all paradise. At the same time, I was experiencing weakness and dizziness, as well as low blood pressure. And there was also the fact that I gained weight shortly after taking them, and my Raynaud's became significantly worse, but I could be upright again. And I was able to go to work, which was just amazing for me.

I was so pumped, and optimistic. Then, less than a year later, my symptoms began to worsen. I increased the dose, and that only came with more side effects. I hear this from a lot of people as well. It may feel amazing at first, but after a while, it appears as if the body is catching up and saying, "OK, I know you're taking these beta-blockers, but I could still get past them and show you my symptoms."

The medicine may interfere with the body's natural processes. Beta-blockers, for example, act by blocking the effects of adrenaline. Although that channel had been blocked, my body still had a lot of other ways of communicating with me that it wasn't doing so well. I started having more problems with mass cells, joint pain, fatigue, and a lot of new gastrointestinal problems. Although my heart rate was lower, there were so many skipped beats and even chest pains.

So, if I could go back in time, I would tell myself not to take that one pill and expect it to solve everything because it may only be a temporary fix. A temporary bandage to get me back on my feet, but to look deeper and to find other ways to ease that adrenaline. To calm the body and to work with that, for example, is like looking at what else is going on in your life and trying to work with it.

Heart Rate Does Not Equal Symptoms

When I was diagnosed, I would also see a lot of people, posting screenshots on Facebook of their Fitbits and other devices tracking their heart rates. Before I was diagnosed, I too used to track my heart rate because in the hospital I could never replicate my symptoms.

I wanted proof to go to a medical practitioner and say, "Look, something is wrong!" Something is going on! And I could actually catch these up on a device. That was incredibly beneficial to me. This is something I've heard from a number of other people with POTS and other illnesses. Seeing various trends is therefore quite useful in the beginning.

But after a while, I just noticed it made me quite anxious. If my heart rate exceeded a certain threshold, I would become anxious, which I'm sure didn't help the symptoms. Many of my clients also struggle with this in the beginning. Some of them even say things like, "Well, I don't want my heart rate to go above a hundred or whatever."

They'll set an alert, which might be handy in the beginning as you find out the baselines and patterns. Even though I no longer have POTS, it may cause more anxiety over time. My heart rate is wonky mostly when I'm standing. It will get high when I stand, but it doesn't necessarily physically bother me. I won't even notice it at the moment.

I'll look at a summary of the date and think, Wait a minute, that did go kind of high. A lot of the times too, when I had more potty symptoms, I would look down, and my heart rate was about 80 or something, which wasn't unusually high, but I wasn't feeling great.

As a result, I've learned not to truly correlate it. It isn't always the case. So focusing on the heart rate can sometimes make symptoms worse, creating a vicious feedback cycle. When you check at your watch and realize that it's running low, it can stimulate your body to release even more adrenaline since you're scared. Then the heart rate can go up even more or cause other POTSie symptoms.

I think it was really great in the beginning to set a baseline and see what kind of things are aggravating me. How is my body reacting to various things?

But after a while, you'll probably start to relax and realize that just because your heart rate is going in a certain direction doesn't mean it's necessarily related to your symptoms.

Regaining Life

When I was first diagnosed, I was stubborn and didn't want to make too many changes in my life. I remember reading online about things, for example, the vagus nerve. As a result, I attempted several relaxing techniques. I tried to make some dietary changes. I was moving my body a little bit more, but these things helped a little bit, perhaps temporarily, but I didn't notice any significant differences.

It was only later that I realized I needed to strip everything from our lives down to its core and start over. There were honestly a lot of things that were not going well. There was a lot of stress. A lot of it has to do with me placing too much pressure on myself.

I had high expectations, not only because of my illnesses and other factors but also because of emotional eating, which had to go right hand and head with the stress. And I think I was incredibly stubborn in admitting that any of these things aren't working well and actually won't change any of these things.

How would it make a difference? There was a part of me that believed these actions would have an impact. Making such a significant adjustment in my daily life felt so daunting that I believe it was easier for me to remain in my small cocoon. But at a certain point, I hit rock bottom emotionally as well.

I believe I've finally recognized that I need to change everything. And I got to strip everything down and start over. It's been honestly amazing. It was terrifying and extremely hard at the moment, but it's been amazing.

It's intentional for me to take proper care of my body. It's not the kind of care that I should be doing this; I must do that, I should do this. And as a result, I'm much kinder to myself than I used to be. I handled stress better, which also caused me to be less anxious. As a result, it has a lot of very favorable overall impacts. It did, however, take some time. I first had to start by admitting that things had to change radically.

Health Is Not The Absence Of Disease

I think we often get caught in the cycle of thinking life is either kind of black or white, right or wrong, sick or healthy, but it's very rare.

There is simply too much gray. When I was first diagnosed, I thought to myself, "Okay, once I get over this, I'll get over this, and everything will be back to normal." Then I found out that I had EDS, a genetic condition. I recall hearing people say things like, "Well, it's genetic, which means you can't get better from that."

I got the impression from it that it was all downhill from here. And I recall being so incredibly discouraged. However, if we take a step back and consider the definition of health, we can see that it is defined as a condition of complete physical, mental, and social well-being, not only the absence of disease.

So what does that mean? In my thoughts, I had such an unrealistic vision of what health should be. I used to think that if I had a symptomatic day, it was just a reminder that I'd never be healthy. It is genetically impossible to be healthy. Why are you even bothering to try? It's going to constantly be like this. When I started feeling a lot better, I still didn't acknowledge it because I kept looking at my heart rate and it was still too high! I would keep being even tougher on myself. I had unrealistic expectations.

EDS is genetic. There will always be certain things I work differently about my body than, say, my husband's or other friends' because I bruise quickly and still dislike standing for lengthy periods of time.

My body does send me little requests of okay perhaps, now you should rest and conserve your energy. There's no need to be standing, and honestly, there isn't a need to be standing so much. Some aspects of my personality work differently, but I'm considerably healthier than I was previously. I'm able to go for lengthy walks, work full-time, see friends, and travel. I can't think of anything specific that I can't accomplish because of my condition.

Recovery Is Not Linear

You might've seen that picture going around the internet of how we think the recovery will be versus what recovery actually is. It was really discouraging to me when I would have a really good patch, and then I would kind of tumble down, and I felt like I just took five steps back.

I would even look forward to good days since I knew that if I had a nice day, there would be more awful days to come, which was not healthy for my mental health. I wish I had kept that picture of the pin with me so I could remember how recovery works.

There are a lot of ups and downs. This is also where self-compassion, kindness, and even support come in useful since I see it all the time with my clients who say they've had a few bad days and then dwell on that, which is human nature.

Celebrate Progress

They often forget that even just a few weeks ago, the tough days they're having now were the good days. And that's also where celebrating everything comes in so handy. You know, celebrate, celebrate, celebrate, because you're probably making a lot more progress than you think you are, even if you are having a few rough days now or flare-up.

If you’re looking for actionable tips on POTS, make sure to watch my 3-day video masterclass on POTS.


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