What is Dysautonomia?

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). The kind of Dysautonomia I have is called Postural Orthostatic Tachycardia Syndrome (charmingly labelled ‘POTS’ for short). It’s 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 200 minus your age. I’m 26, so according to the maths, I want to aim for a heart rate below 174 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?

42 thoughts on “What is Dysautonomia?

      1. 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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  1. 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.

    Liked by 1 person

    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.

        Liked by 1 person

  2. 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!

      Liked by 1 person

      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!

      Liked by 1 person

  3. 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.

    Liked by 1 person

    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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  4. 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.

    Liked by 1 person

    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.

      Liked by 1 person

  5. 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

    Liked by 1 person

  6. 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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