Keep in mind that I'm not a medical doctor, I'm just another human who is working out their POTS and dysautonomia diagonsis. This comes from human to human. I hope you'll join me in the learning process.

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Dysautonomia is a nervous system disorder that affects the autonomic systems in the body (Cleveland Clinic). The autonomic system. The autonomic nervous system is essentially the system in our body that governs and regulates the events that need to happen automatically and involuntarily in our body to ensure our ability to be alive and survive. For example, heart rate, breathing, disgestion, etc (Waxembaum et al, 2023).

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Often in trauma therapy, we talk about the autonomic nervous system (ANS) as it pertains to trauma and acute stress responses. I often explain to my clients that we must understand the body is an ecosystem, and ecosystems adapt. Our body's ecosystems are also established due to the conditions they are in, and biopsychosocial factors at play.

Our nervous system is not just something that affects mood, nervousness and anxiety. This is something I often hear in the therapy world, especially online, is this discourse that people only experience nervous system dysregulation because they experienced childhood trauma or something happened along the way. I also hear that the grounding and general anxiety management tools will act as a cure for dysautonomia, which frankly at this point is not true.
 

While it is true for some that there is a specific reason for a disregulated nervous system, and even many, that will not always be the case. I searched my entire life history when I was in school for counselling, looking for the reason for my body presenting as highly traumatized, and I never found it. No one hurt me as an infant, my mom was and is the kindest soul I've ever met who attended my every need. I was labelled as a high needs baby from the first few weeks of my life. Sure, there may have been some events while I was in utero that stressed my mom out, but not enough to cause me to black out a bit every time I stand up. This is why it is so important that we talk about things like dysautonomia. It is possible to be built different. It is possible that our body's ecosystem had to adapt to something in the gene code, something in the connective tissue, something else. It's also important for us to understand that it is okay that we have this thing. We aren't broken, we are just buit differently, and we deserve to be seen and understood in that.

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So how can we understand dysautonomia? Research is starting to kick up around this topic, and sometimes that takes time. The best thing any of us can do is continue to keep an eye on the medical papers coming out of dysautonmia clinics around the world. The University of Calgary and AHS have autonomic clinics which are supporting patients and conducting research for example. For the sake of you reading here, I'll share a little bit about my understanding of what dysautonomia is based on the wild variety of papers I've read, doctors I've spoken to, and my own lived experience. The best way I can put my own personal experience (and this is only ONE kind of POTS too, there are several) is that the sympathetic nervous system (the one responsible for action/activation) is highly sensitive and responds to all demands with 150% committment. This would be admirable if it didn't result in a heartrate spike anywhere from 30-100BPM just by standing up. This event is known as POTS, Postural Orthostatic Tachycardia Syndrome. Other symptoms that can crop up due to the sympathetic nervous system in the ANS overreacting can be changes in blood pressure, extreme persperation or lack thereof, dizziness, chronic fatigue (when all systems are go for a long time, or simply just happening at the most basic reason, it's like you've been running a marathon except you're just being alive. It's tiring.), brain fog and difficulty focusing, nausea at random, heart palpitations and chest discomfort, and generally short of breath and light headed (Dysautonomia Project). That having been said, most people with dysautonomia and/or POTS will also have a slew of other symptoms as well. This is where is starts to get confusing and where the research is so important. I for example have all of the above symptoms, and some other strange symptoms. I see hundreds of floaters in my eyes at all times, once burst out in full body hives/all joints swollen/esophagus in spasm for 2 and a half weeks, have extremely cold fingers and toes, Raynaud's phenomenon (fingers/toes/ears swell to an extreme degree at temperature changes), have random stabs of joint pain, always battlign with heartburn and esophogeal spasms, get violent headaches, etc. The list always goes on and on for people within this community.

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While the research isn't fully there to explain the links between dysautonomia, POTS, MCAS, EDS (Ehlers Danloe Syndrome), and other connective tissue disorders, there are these disorders that seem to go hand in hand. That's when I start to think about the body as an ecosystem. Disclaimer, this is how I currently think about it based on what I've read, heard and lived. This is certainly not proven, so maybe this just works as a metaphor for the time being. Maybe it's just a pacifier until the real science comes. For me, this is just how I think about it. Say for example that someone has a connective tissue disorder when they're born, maybe something in their gene code, maybe just something inherited or modified by the time they formed in the womb. The systems of the body adapt. Just as they would with trauma, and just as they would if a violent virus such as COVID entered the ecosystem (there has been an uptick in people developping POTS alongside long COVID, Mallick et al, 2023). Bodies have to stabilize themselves. They need to balance, they need to keep the heart going, they need to perceive if there is danger, etc. If the body for some reason detects that there is an active threat, it will respond. If it reads something as a threat, it will respond as such even if the threat is not necessarily real. We know this from PTSD. If someone has a connective tissue disorder, it makes sense to me that the body must be working harder to balance and stabilize itself, thus calling more heavily on autonomic function. This is also relevant if the connective tissue is the tissue within the heart/lungs/gut etc. Connective tissue is everywhere in the body, it's not just fingers and hips - this is a whole system experience. So, if a body is responding to the threat of the fact that its organs don't feel stable, or its hips/wrists/joints et al, it makes sense that the autonomic nervous system must be tasked with evolving to respond more intensly. This is tricky though, because now the body is flooded with the same responses that would occur in a stress response. All those things people teach you about fight/flight/freeze, we experience those just becasue we had to do a normal task like putting dishes in the dishwasher. Heart rate up, blood pressure potentially affected, digestive system altered, cognition potentially impaired, circulation impacted, the whole gamut is available once those systems are cued up. 

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The next thing to consider, as we consider with people whose nervous system responds this way due to trauma (a learned and chronic threat response is activated at the input of a stimulus coupled with the initial traumatizing event) - wheredoes that whole threat reaction go? Humans are built to fight off danger, to flee it, or in worst case scenario to freeze until the threat has passed. But as with trauma, in dysautonomia, we just have these majorly activating responses happening in an 'inappropriate' time, ie the threat is not real, we do not need to take off like a shot or faint on the spot to play dead. So we don't do any of those things. We just ride it out. The result of this, and again we see this in people with trauma, is an affect on the body. Sometimes the digestive system can be so thrown off by chronic stress that IBS develops. We may also see fibromyalgia, GERD, inflammation, and sometimes we even see uptics in likelihood for development of cancer as a result of repressed emotional content. In my mind then, it makes sense that for people whose autonomic nervous system is simply built to respond as though threat is always present, that this would have an impact on the rest of their body. Whether that's because they have too much cortisol, their histhamine levels are spiking too often, their muscle and tissue is handling the input of that much adrenlaine 50-100 times a day...whatever the reason, our ecosystems are all working to adapt to the variables at play. We may have more pain. We may be more fatigued. We may get sick more often (ask me about the immune response...there's so much to say, I don't think I can get it all in here!). We are one great big system in this body, and we are extremely nuanced. Whatever you're experience, or your loved one is experiencing, makes sense within the framework of the ecosystem. 

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As for getting a diagnosis - which often is extremely empowering for people because it gives us somethign to stand on, something to be able to explain to ourselves and others why we're feeling the way we do - it can be very difficult. There are so many overlapping symptoms, and it can be difficult to find an issue in bloodwork and tests. For those who experience full fledged EDS, a diagnosis is very probable and may ultimately be supportive in seeking medical treatment, or at least directing your treatment plan. Then there are other folks such as myself who likely will never find that reason why the ANS adapted the way that it did. Is it one link in my gene code that has a trace of Marfan like my great aunt and possibly her daughter had? Was it terratogens when I was in the womb that we didn't consider? Who can say. 

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With or without a diagnosis, as you likely know if you're reading this, there are ways to support yourself and your loved one if they're experiencing dysautonomia in some way. The usuals, compression stockings (remember when you have to run away from a tiger, your blood is sent to the extremeties, or if you've gone into a freeze, your blood is sent to the vital organs only...wonder if this is why I'm always so freakin cold?), lots of hydration and electrolytes so that even if your heart is working hard it has what it needs to keep up, recumbant (!!!) exercise, and a whole lot of vagus nerve stimulation.
 

And that is where I work. Now, POTS/dysautonomia is currently not something that can be cured. Maybe one day. The hope here is that we can support the experience of living with a body that works this way, and develop ways of working with symptoms and reducing some discomfort if possible. I work with my clients to support the regulation of their nervous system through an all means necessary approach. Nothing is too small, nothing is too silly. We need to stimulate the parasymapthetic nervous system (which is also known as the vagus nerve or wandering nerve) which is responsible for the down regulating of the ANS. Most specifically, we need to tone the ventral vagal branch of the parasympathetic nervous system. Again, ask me about that anytime, but for now I'll just prompt you to look in the polyvagal theory to learn a bit more! Like I said, the science isn't there yet to say what exactly causes POTS, or how we can try to help the ANS adapt differently, but I believe it never hurts to tend to a dysregulated nervous system of any kind through any means necessary. If you're curious to try somatic therapy, or even just talk about your experience and interaction with dysautonomia/POTS/chronic illness/EDS/connective tissue disorders, lets setup a consultation call and chat!

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I've also included below a handful of tools that you can try at home to encourage your parasympathetic nervous system to course correct from time to time. You can access it below!

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References​

Waxenbaum JA, Reddy V, Varacallo MA. Anatomy, Autonomic Nervous System. [Updated 2023 Jul 24]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK539845/

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​Mallick D, Goyal L, Chourasia P, Zapata MR, Yashi K, Surani S. COVID-19 Induced Postural Orthostatic Tachycardia Syndrome (POTS): A Review. Cureus. 2023 Mar 31;15(3):e36955. doi: 10.7759/cureus.36955. PMID: 37009342; PMCID: PMC10065129.

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https://my.clevelandclinic.org/health/diseases/6004-dysautonomia

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https://thedysautonomiaproject.org/dysautonomia/

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https://www.polyvagalinstitute.org/whatispolyvagaltheory

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