What is Dysautonomia?

~ Reflections Of A Bear

Dysautonomia is a condition where the autonomic nervous system (ANS) doesn’t work properly. But what is the autonomic nervous system?

Imagine the tower at an airport. You know, the control room, where they instruct all the planes? They tell the pilots when it’s safe to land, or to take off, and which bay they should leave from. They give them updates on the wind speed and the weather. That’s like the Autonomic Nervous System (ANS). The ANS controls everything your body does automatically, without you thinking about it. It’s supposed to be in charge of things like heart rate, blood pressure, breathing, oxygenation, circulation, digestion, pupil dilation, perspiration and the function of lots of your organs (heart, stomach, intestines, bladder etc).

Now imagine if most of the tower controllers went on strike, and all the pilots were basically left to fend for themselves. Planes would be crashing in mid-air, there’d be traffic jams of planes all trying to leave from the same bay, and there’d be long delays. That’s dysautonomia. That’s what it’s like for your systems to try to work without the control tower telling them what to do.

So what does it look like, in everyday life, when your tower controllers have gone on strike? Well, it affects each person differently. There are many different kinds of dysautonomia (just like there are lots of different kinds of cancer). I have two kinds: Postural Orthostatic Tachycardia Syndrome (charmingly labelled ‘POTS’ for short) and Neurocardiogenic Syncope / NCS (also known as Vasovagal Syncope, or Neurally Mediated Syncope). Both of them are mostly just a fancy way of saying my body doesn’t cope very well with being upright. Normally, when you are upright, your ANS is working behind the scenes, making sure that your blood is pumping around properly (because gravity wants to just collect it all in your legs) so that your brain is getting enough oxygen. It does this by making small adjustments to your blood pressure and heart rate. But when you have POTS, and the ANS is malfunctioning, there’s no nice man sitting in the control tower helping your body adjust. It’s more like having a three year old sitting in the tower, bashing on the buttons and wailing that they want a cookie.

It means I’m always tired. Always. My body is working so hard just to keep everything functioning, so I use up most of my energy just existing.

Being upright (sitting / standing) is hard work. My body doesn’t do a good job of pumping the blood (and oxygen) around my body. So the longer I’m upright, the more painful and swollen my legs get (blood pooling) and the more tired my brain gets (not enough oxygen). My blood pressure is often low (meaning that my blood is only sluggishly moving around my body, distributing oxygen). My heart rate, when I’m upright, is high (because my body is working so hard just to stay upright). The “maximum heart rate calculation” is 220 minus your age. I’m 26, so according to the maths, I want to aim for a heart rate below 194 when I’m exercising. I can hit that just taking a shower. I often have to lie down after a shower, panting like I’ve just been for a sprint down the street. Sometimes I struggle to breathe – taking deep breaths, but not getting any oxygen (the ANS is in charge of that).

I’m often in pain.

Once it gets to afternoon, I have trouble seeing (because the ANS is in charge of making the adjustments to your pupils that allow you to see in dim light). Sometimes, when I’m especially tired, my eyes won’t focus so I can’t see (because the ANS is in charge of the focus mechanism in your eyes).

I have trouble staying a comfortable temperature (the ANS is in charge of temperature regulation). If I get cold, I find it very hard to get warm again. If I overheat (which can happen very quickly, and makes me sick) it’s very hard to cool down. I often burn myself, because it takes too long for my body to realise that what I’m touching is very hot.

I find bright lights, noise and conversations tiring (my body is already working so hard – now it has to work even harder while it processes all this stuff that’s going on around me). I struggle with words and memory. Blogging is okay, because I can save a draft and come back and edit later. But conversations are hard. Sometimes I forget people’s names. Sometimes I forget MY name. Sometimes I rudely interrupt someone part through their sentence, because my brain hadn’t registered that the pause had passed and they’d started speaking again. Sometimes I start talking, and then forget what I was going to say, or I use the wrong word (like calling singlets “rissoles” here). I forget appointments (thank goodness for phone alarms!) and things that have happened.

Dysautonomia affects my digestive system too. I have problems swallowing sometimes (the ANS just forgets to send the message to the muscles to swallow, and I end up choking). I’m very limited in what I can eat (see here). In addition to only eating a limited list of foods, I have to take special tablets that help break my food down. When the food does get to my intestines, sometimes they don’t bother getting the nutrients out. After that, the ANS sends confusing messages to my bladder and bowels… or no messages at all.

I flew down to Melbourne and had a pacemaker inserted in June. My dodgy ANS would sometimes forget to tell my heart to beat. So my heart would just… stop. Obviously, this is not a good thing. Cue Baymax. He kicks in and beats my heart for me whenever it gets too slow, or calls it quits.

Blog Chest Xray

And, just a reminder? You can’t SEE a single one of these symptoms (or the many others that come with a condition like dysautonomia ). Please remember that, the next time you see someone who “looks” okay, but is in a wheelchair or using a walking aid, or is asking for your seat on the train.

I look healthy.
But I have dysautonomia.
Now you know a little bit about what that means.

xx S.

Do you have a chronic illness?
What’s one thing you’d like muggles (non-chronically ill people) to know?
If you’re not chronically ill, what’s one question (or more!) you’d like to have answered about chronic illness?

Published by Reflections Of A Bear

Just a bear thinking deeply about chronic illness...

62 thoughts on “What is Dysautonomia?”

  1. Pingback: Dysautonomia: the umbrella | Reflections Of A Bear

      2. It is difficult, isn’t it? I think it’s because a lot of what’s going on is things you can’t SEE. Glad my post could help. Let me know if there’s anything else you think needs a good explanation, or a pictorial representation, and I’ll get right on it! ❤

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      1. Hi Anonymous.
        I’m very sorry to hear about your daughter’s illness. *hugs*
        How are you looking to help her? Help in managing symptoms? Help in looking for a doctor to treat her? Day-to-day ‘getting things done’ help? Emotional support?

        xx S.

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  5. What doctor did you see to receive this diagnosis? I have been dealing with similar symptoms without solid answers of why but family doc has no explanation. Thank you for sharing your story.

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    1. Hi Stephanie! I’m sorry to hear you’ve been having similar symptoms. The best way to get diagnosed is to ask your doctor to refer you for a tilt table test. It’s a test done in hospital, where they strap you to a special bed that tilts up and down, and they measure your blood pressure and heart rate in response to the changes. If your family doctor won’t refer you for that test, ask them to refer you to a cardiologist or neurologist (depending on which your symptoms fit under best), and then ask that specialist for the referral. Best of luck!

      xx S.

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      1. Thank you – I have a neurologist for migraines that I see so I might mention it to him. My cardiologist had terrible bedside manner and would not have even heard me mention any symptoms aside from heart symptoms (I no longer see him). Thanks for your quick response.

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  7. I have fibromyalgia and emphasima. The look on a chronically ill person’s face does NOT reflect how they feel about YOU. They are NOT giving YOU a dirty( or any other kind) of look. When you see someone with a “mean”, strained, angry, or otherwise less than friendly look on their face please realize THEY are struggling through another day. THEY are most likely in pain. So understand they don’t really want to display their pain on their face so ignor their face and treat them like you would anybody who LOOKS friendly. YOU may be surprised.

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    1. Yes, this is a hard one, isn’t it! As kids, we would sometimes think Mum was grumpy with us because of the look on her face. In reality, she was just tired and in pain.

      Photos of me at family Christmas gatherings are always horrible. I look so grumpy. In reality, I’m having a great time, but I’m just completely exhausted – the camera never seems to come out until the end of the day, and by then, I’m pretty much just a puddle.

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    2. Exactly, I have Parkinson disease and I get a little pieved at people who don’t know me coming up to me and saying “smile” when I thought I was.but with this disease you get a mask look on your face if your happy or not. Then there’s the people who think it’s their job to tell you you look tired…. Really!

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      1. I know! If it’s a family member or friend saying to me, “You look tired. Are you okay?”, that’s understandable. But a complete stranger walking up to me and telling me I should smile and not look so tired?! So rude.

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    3. Yes, this! I am constantly being told I look worried, I shouldn’t worry so much, and I have never understood it, because I am not feeling worried at those times. I realize now that what they are seeing us my struggle to focus my attention, keep the train of thought and the proper words I need to use out of the brain fog. They are seeing the fight on my face as I defy gravity!

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  8. Pingback: What is Dysautonomia? | Peerspectives

  11. It was startling to see your post show up in my Facebook news feed. I was diagnosed with dysautonomia as a teen, but I was only told that i had a birth defect and given the name of my primary symptom (vasovagal response). I didn’t find out the actual name of my condition until this year (18 years later) when my doctor was clarifying what I should expect in upcoming years. I had been told my that my issue would go away by age 30. (Magically, I suppose…). Instead I’ve had to reset my expectations and management. I go months between vasovagal episodes by staying hydrated, monitoring my diet and managing stress (trying to at least).
    Reading your blog post helps me understand my own condition better. I’d always equated my condition with the fainting, but I never knew about the other issues related to dysautonomia. I’m always cold, but I’m prone to get dangerously over heated. My eyes don’t adjust to light quickly, and my body doesn’t seem to regulate my appetite well.
    I also realize how lucky I was. I never knew how severe this illness could actually be. Thank you for sharing your experiences.

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    1. Those are the two of my pet peeves!

      (1) Being told that your illness will magically disappear within a certain timeframe

      What if it doesn’t? How are you supposed to cope? And how can a condition brought on my so many different things (trauma, genetics, post-viral, connective tissue disorders, puberty, pregnancy…) be expected to disappear the same for everyone? Sure – if your onset was because of a stressful pregnancy, maybe your body will reset after the baby is born. But if it’s genetic, how do they expect it to go away?? And what if it’s the result of a car accident – damaging the brain stem. Are you just going to “grow out” of that too?

      (2) Not being given understandable information about the condition you’ve been diagnosed with.

      My diagnosing doctor was useless, pretty much threw me out once we got the diagnosis (it wasn’t her area of speciality, so she didn’t care about it). Most of the information I’ve learned through researching myself, and talking to others with Dysautonomia in support groups. It makes no sense at all for doctors to leave us in the dark, because understanding your condition gives you more power to manage it. I’m not sure whether it’s because the doctors themselves don’t understand it, or whether they just think the information is over our head. Either way, something needs to change.

      I’m glad my experiences could help 🙂

      xx S.

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  12. Reblogged this on F Words I Love and commented:
    I hope everyone will read this, even those who aren’t affected by dysautonomia or chronic illness. I’m familiar with a lot of chronic and invisible illnesses, and prior to reading this, I had assumed dysautonomia was essentially a chronic ataxia. This is a wonderfully straightforward explanation that may help you to empathize with more understanding if you ever meet a person affected by dysautonomia.

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    1. Thanks for helping to raise awareness! Dysautonomia is rarely heard of, even though it affects so many people. I had never heard of it before being diagnosed with it.

      Hopefully by raising awareness, we can help sufferers get diagnosed earlier, and understand their illness better after diagnosis.

      I hope it also helps non-chronically ill people to better understand chronic illness, so they can empathize and support, instead of judging.

      xx S.

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  21. I still can’t absorb all this. This sounds so horrible. It must be so hard, honey! And yet, I see you being so bright and cheerful on your and others’ blogs! I have to commend you for your spirit! Your comments on my blog made me blush the entire day. You’re very brave and optimistic not to let all this have a negative effect on you as a person. Instead, you have found something good here too, sharing all this information with others and helping them. I think I’m gonna speak on Dysautonomia next time in school whenever I get an assignment or something.
    Stay positive, my friend. ❤
    Lots of love,
    ~Diksha

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  22. Your lovely comments made me smile ❤

    I'm not always bright and cheerful, I assure you! Living with chronic illness is tough, and sometimes I get sad or frustrated. But I trust what God is doing, and I try to let that show in my attitude, and the way I live my life.

    Contentedness is a choice. Would I love to have a healthy body? For sure! But if I had a healthy body, would I be so happy that I'd never want anything else? I'm sure I'd get used to my healthy body (like everyone else does!), and then I'd be wanting another thing. A different shaped body, a nicer house, a big garden…there's always something that we don't have, that we would like. Instead of focusing on those things, I do my best to be thankful for the things God has given me (and there are SO MANY of those!)

    I have never heard of anyone speaking about Dysautonomia at school. I think that's an amazing idea! If someone had spoken about Dysautonomia at my school, maybe it wouldn't have taken me six years to find out what was wrong with me! It would be wonderful if more people had heard of it, or even knew a bit more about how there are lots of illnesses that can affect someone without being "visible" when you look at them. If you ever decide to do it – feel free to ask me lots of questions 🙂

    xx S.

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  25. Great post. Thanks. Could you tell me the name of the drug that helps you break up your food? I’ve also have POTS, and have a horrible time eating because it makes me so tired. I was wondering if this drug might help. Thank you!

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    1. Hi April! Sorry to hear that you struggle with this too! That particular medication is not actually a drug as such, it’s more of a supplement. It contains all the digestive enzymes needed to break up food (the enzymes your body would usually make itself, but sometimes we don’t make enough of them ourselves).

      The particular one I take is made by a company called Metagenics. It comes in a capsule, and is called ‘Vegetarian Digestive Enzyme’ (I’m not vegetarian, these ones just happen to be vegetarian friendly).

      If you can’t access this particular one, don’t worry – just look for another one. You want something that includes the enzymes Protease (breaks down protein), Amylase (breaks down carbohydrates), Lipase (breaks down fats) and Cellulase (breaks down plant fibres).

      You may need a naturopath or general physician to prescribe them for you (you don’t need a script, but sometimes you need help from a medical professional to be able to access them).

      I also take a good quality probiotic from a company called Bioceuticals. Probiotics contain the good bacteria that your digestive system (and also immune system) need in order to be able to function well.

      In regards to eating making you tired – that’s because your body diverts blood to your digestive system after you eat (which is not a problem for healthy people, but can cause issues for people with dysautonomia). In order to minimise the effects, it’s best to eat small, regular meals throughout the day (instead of three large ones), and to eat things that are easy to digest.

      Hope that helps!
      xx S.

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  27. I have had Psoriatic Arthritis for at least 7 years.
    That just because I came into work a-ok, does not mean at the end of the day I will be the same. And that is why I park in the handicapped slots.
    I am always in some sort of pain, it just varies in intensity. Please don’t make it a competition.
    Thank you for advocating for those with invisible illness. We all need to stick together.

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    1. “…just because I came into work a-ok, does not mean at the end of the day I will be the same.”

      Definitely!!! In fact, it’s more than likely you’ll be worse by the end of the day, BECAUSE you’ve been working all day! Even a healthy person is more sore and tired at the end of a work day than they were at the start – so it makes perfect sense that someone who was already struggling at the start of the day is going to be dragging by the end!

      When you said, “I am always in some sort of pain, it just varies in intensity. Please don’t make it a competition.” were you referring to me making it into a competition, or to others? I certainly hope I haven’t come across as though I feel like it’s a competition (because I definitely don’t think that way)!

      *gentle hugs*

      xx S.

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  30. Do you offer a printable version of your fabulous description? Trying to understand my sister’s diagnosis and explain to others, as took a very long time in having symptoms recognized! Thank you!

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    1. Hi Elizabeth 🙂
      Sorry, I somehow missed your comment! I’m so glad that you found the description helped you better understand your sister’s diagnosis. ❤️

      I don’t have a printable version, but Hannah over at Stickman Communications (google that name and her site will pop up) has small key ring cards with simple explanations of things like POTS and dysautonomia. They can be super handy for when you’re out and about and need to quickly explain your illness to someone. That might be the kind of thing your sister might find helpful?
      xx S.

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  31. So sorry you are going through all this. What a strong person you are! Thank you for explaining this and thank you for your umbrella infographic. Very helpful in navigating Long Covid….which I’ve learned can involve Dysautonomia. Thanks, again!

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  32. Thank you for all the great information! I have been recently diagnosed with this, after several years struggling to find a diagnosis for all the crazy symptoms I was having… now I am having to get a pacemaker… at the ripe -not-so-old age of 48. It was incredibly scary to hear. It’s hard to even talk to my partner about, because it scares her so much, too. Every day is a struggle for me at this point. The tilt table test was what finally gave my doctor the answers and my neurologist (for chronic migraines) sent me to an autonomic specialist who is fantastic and quickly found out what my issues were. The tilt table showed it for me and led to finding my heart issues that I wasn’t even aware of. I was just beginning to have the syncope episodes and I wore a heart monitor that showed I had a level 3 AV heart block. Very scary stuff. I have many issues, including diabetes (genetic), a gazillion things that I can’t eat due to inflammatory allergies that have led me to becoming mostly vegetarian… which, honestly I don’t mind. It has led to my tummy issues being much better. I have to say, if the pacemaker gives me less dizziness and less fatigue, I’ll be a happier person. Does anyone else have the incredibly terrible hot/cold episodes like, every 10 minutes??? I’m on hormone medicine and all my numbers are perfect, but nothing is making it better… It’s honestly ridiculous. I’m sorry for the long post, but this is the first place I’ve seen that has the most honest, comprehensive info in this that I’ve found, from REAL people. Thank you, again, for sharing your journey.
    Valerie M.

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    1. Hi Valerie,
      Welcome! I totally empathise with the years spent struggling to find out what is wrong (it was just over 7 years for me). Finally having a name for it, and an understanding of what is going on inside your body, is such a relief!

      If your heart is struggling (which the tests indicate it is) then having a pacemaker will likely give you at least *some* symptomatic improvement (possibly lots! But it’s not a guarantee).

      The pacemaker stuff seems scary, but over time you (and your partner) will become used to it. Untreated heart stuff is far scarier!

      If you have a form of dysautonomia (like POTS, Neurocardiogenic Syncope / Vasovagal Syncope / Neurally Mediated Hypotension, Orthostatic Intolerance, etc) then struggling with temperature regulation is common (because it’s controlled by the system that is dysfunctional). Easily overheating, struggling to cool down, not being able to warm up, or flipping between too hot and too cold, are all common examples of this. Like you, my hormone levels are perfect, and I’ve been thoroughly checked for other things that could be contributing. But for me, the temperature issues are just caused by the dysautonomia. I just deal with by managing the dysautonomia as best I can (meds, lifestyle changes, etc), and by choosing clothing / bedding etc that I can use to help warm up or keep cool.

      Sending a giant hug!
      xx S.

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  33. My daughter is scheduled for a pacemaker for POTS and we are nervous to say the very least. She is 16 and has Ehlers Danlos also. I saw you mentioned that you have this too. Do you think having EDS make your recovery longer?

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    1. Hi Theresa,

      I hope the pacemaker is as helpful for your daughter as it has been for me!

      I can understand the nerves though. Yes, having a connective tissue disorder / hypermobility disorder is likely to increase the recovery time. Mine was longer than expected, especially since I ended up having to have a lead reattached 5 months after my initial surgery.

      I spoke at length with my surgeon about placement, to make sure my pacemaker was implanted in a way that minimised the chance of it “wandering”.

      Best of luck to your daughter! ❤️

      xx S.

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  35. Hi, Sarah/Bear! I’m hoping you are still checking new comments because I want to express my gratitude to you for writing such detailed, educational, and relatable posts on dysautonomia.

    I was recently diagnosed with OI just a month ago. Dizziness, weakness, fatigue, presyncope, nausea, tremors, heat intolerance, heart palpitations, etc. are my usual symptoms. Among my online searches, I found your blog through your helpful infographics. (I love the dysautonomia umbrella. I shared it with my partner and family.)

    Even though we’re in different hemispheres, I found myself relating to your posts an incredible amount. I’ve had dysautonomia symptoms for as long as I can remember, but it was only this summer that they reached a point where I really needed medical attention. I also struggle with mental health conditions, and I thought most, if not all, of my physical symptoms were a result of anxiety (a misdiagnosis that many dysautonomia patients receive).

    I’m also a 20 y/o college student. While most of my peers are partying at night, doing an internship, or just simply having fun being young, I spend most of my time in bed resting. It does make me feel shameful, even envious, at times. I get frustrated at myself. And sometimes, I’ll wonder: “Can’t I just stand up and do something without feeling unwell? Am I just faking this? Am I just being lazy? I was okay a year ago, so why am I unwell now?” But throughout this process, I’ve learned that self-compassion is extremely vital.

    Your posts (especially the one on grief and relief) remind me that disabilities *are* disabling. I’m allowed to rest, take care of my health, and grieve. I’m allowed to seek support. I’m allowed to be a part of a community. I’m allowed to feel emotional, even upset, especially when my healthcare system doesn’t know much about dysautonomia.

    I apologize if this comment is lengthy! I don’t normally leave comments on websites or blogs, but I felt strongly about thanking you for your work. Blogs like yours are ways I find meaning and support during a difficult time. I hope you’re managing, and thank you so much again.

    P.S. I really like the bear aspect to your blog. I, too, am in hibernation.

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    1. Hi Di,

      I most certainly do still check new comments (although not always particularly quickly, depending on what else is on my plate).

      Don’t apologise for your long post – I’m always encouraged to hear someone has found a post helpful! ❤
      Stories like yours are why I still pay each year to keep my blog available, even though I'm no longer well enough to continue adding new posts. 🙂

      It's completely normal to feel frustrated, embarrassed, ashamed, envious, anxious, depressed (or any other number of emotions) because of the way your medical condition impacts your life. But you are right, self-compassion is absolutely vital.

      "Talk to yourself like you'd talk to a friend in your situation" can be a helpful mental recalibration. Would you shame an unwell friend for not being able to do something? Think of them as worth less than someone with more physical capabilities? Berate them for feeling frustrated or sad about their limitations / how hard it is to get help / how painful it is to watch their life seemingly slip away while everyone else merrily carries on? I suspect you wouldn't. But for some reason we sometimes (or often) treat ourselves that way.

      Finding a community *absolutely* helps. Therapy – with a therapist experienced in dealing with patients who have a chronic illness – can also help, especially during the adjustment period. It doesn't fix the physical symptoms, but it can make coping with them less difficult. There's no shame in needing help to cope with the burden of a frustrating body that behaves like a wonky donkey while everyone else canters around on their sleek thoroughbreds.

      Sending a gentle commiseration hug ❤
      xx S.

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