Dysautonomia Awareness Month

October is Dysautonomia Awareness Month! Did you know that there are many ways in which the Autonomic Nervous System can malfunction? Three of the most common syndromes linked to Dysautonomia are Orthostatic Hypertension, Postural Orthostatic Tachycardia and Vasovagal Syncope. However, these three conditions have many similarities, which in turn can cause a wide range of debilitating symptoms. As this post is about raising awareness, I have tried to display photos that showcase how difficult these conditions are to live with. They are defiantly not my most flattering photos, but I knew my mum’s sneaky hospital snaps would come in handy at some point!

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What is the Autonomic Nervous System?

The Autonomic Nervous System (ANS) is in charge of the bodily functions that we don’t have to think about, such as:

  • regulating your heart rate & blood pressure 

  • digestion

  • bladder control

  • sweating

  • stress response

What is Orthostatic Hypotension?

Orthostatic Hypotension is a form of low blood pressure that happens when you move into an upright position. This is because, gravity causes the blood in your legs and abdomen to pool upon standing. Causing your blood pressure to decreases, as there isn’t as much blood circulating back to your heart. Normally, special cells sense this change in blood pressure, which in turn send signals to your brain to ensure your heart beats faster and pumps more blood. This response then stabilises your blood pressure - isn’t the human anatomy clever?! Sadly some of us have don’t have the natural ability to counteract low blood pressure, as something interrupts our body’s natural process. As a result of this, sufferers are left feeling lightheaded; dizzy; weak; nauseous; confused; distorted due to blurred vision; and prone to fainting spells. 

What is PoTs?

Postural Orthostatic Tachycardia Syndrome (PoTs) is another condition that can cause your ANS to not function properly. As mentioned above, the ANS controls multiple bodily functions without needing to think about it. But for patients suffering with PoTs, your ANS doesn’t work properly. Therefore, when moving into an upright position, there is a drop in the blood supply to your heart and brain. This then causes your heart to race, in order to try and compensate for the drop in blood supply. Both PoTs and Orthostatic Hypotension have similar symptoms. However, PoTs can also cause patients to suffer from heart palpitations;  uncontrollable shaking; sweating; fatigue; chest pain and shortness of breath. 

What is Vasovagal Syncope?

Vasovagal Syncope occurs when you faint, because your body has reacted to a trigger. These triggers can cause a sudden drop in your heart rate and blood pressure, which consequently reduces the blood flow to your brain. All of which, can cause you to briefly lose consciousness. It isn’t always possible to avoid a Vasovagal Syncope episode; but if you begin to feel lightheaded or like you might faint, you should try to lie down and raise your legs. 

Sometimes there is no known Vasovagal Syncope trigger, but some of the common triggers include:

  • standing for long periods

  • suddenly changing position

  • heat exposure

  • seeing blood

  • extreme pain

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Autonomic Dysfunction is often associated with many medical conditions. Ehlers Danlos Syndrome (one of the many conditions I suffer from) is often linked to the three Autonomic Dysfunctions listed above. Collectively the symptoms linked to these dysfunctions, can be very disabling for sufferers. However, it can be very difficult to effectively manage your symptoms and/or begin treatment, because it isn’t easy to get an official diagnosis. Remaining undiagnosed can also massively impact a patients mental health. I had to fight for many years to find a doctor who believed me, causing me to wonder if I was imagining such symptoms. Thankfully, I am now under the care of a fantastic doctor at the RVI Hospital in Newcastle. So if you think you are suffering from a similar problem then you can visit the websites listed at the bottom of this page, to find a recognised expert near you.  I will also link some pages that offer advice on managing your symptoms, as I am definitely not an expert! But I have listed some of the things I do to manage the range of symptoms I experience:

  • stay hydrated 

  • avoid standing for long periods of time

  • keep active   ***(Remember to avoid exercises that could be detrimental to your health! The only thing I can safely do is to swim/stretch in a hydrotherapy pool.)***

  • wear compression stockings

  • avoid suddenly changing positions 

  • ensure I have lots of salt in my diet

  • not drinking caffeine & alcohol 

  • take Ivabradine, which decreases my heart rate

  • take Midodrine, which narrows my blood vessels ***(many patients are also prescribed other medications such as Beta-Blockers or Fludrocortisone)***

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