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Allergic to Gravity!!

calendarJuly 1 2022

Hi, I am Skye and I am allergic to gravity… well not exactly but I do have a syndrome called Pots, which often makes it feel like that. In this blog I am going to explain about PoTs, my experiences with it and how you can help someone with PoTs like me.

What is POTs?

Headshot of Skye. She is 19 years old and has long blonde hair . She is smiling and is wearing a blue shirt with white trim and buttons.

Postural orthostatic tachycardia syndrome, or PoTs, is an autonomic nervous system disorder (dysautonomia). Your autonomic nervous system controls all automatic processes in the body, that is the ones you don’t think about, such as heart rate, blood pressure, breathing and digestion, so PoTs pretty much affects everything. However these widespread symptoms are mainly triggered by remaining in an upright position, standing, sitting etc.

When someone without PoTs stands up gravity slightly drops blood to their lower limbs and their body sends off signals to counteract this change. With PoTs patients, this reaction is intensified, meaning the body’s fight or flight reaction is triggered. This usually includes an increase in heart rate and for some, a drastic change in blood pressure (a drop or increase) which is accompanied by other symptoms. This is why many people with PoTs joke that they are allergic to gravity.

Symptoms

PoTs affects most of the automatic processes in the body which leads to many different symptoms.

 Some symptoms include:

  • Dizziness
  • vertigo
  • fainting
  • Heart palpitations (tachycardia)
  • Abnormal heart rhythm
  • Chest Pain
  • Breathlessness
  • Too high or too low blood pressure
  • Blood pooling
  • Tremors and shaking
  • Digestion issues – nausea, vomiting, etc.
  • Insomnia and poor sleep
  • Chronic fatigue
  • Brain fog
  • Dry mouth
  • Bladder issues
  • Chronic pain
  • Exercise intolerance
A blue character is standing with their head in their hand and eyes closed. they are wearing yellow dungarees and a dark blue shirt. They are standing in front of a swirling green and navy blue spiral, indicating dizziness.

Despite the fact PoTs symptoms are mainly triggered by standing, symptoms can also be triggered by several things such as temperature changes, eating, lack of sleep, caffeine, exercise, standing and many more.

My experience with PoTS

Some people develop PoTs after a virus or illness and even now after COVID – 19, others like myself, develop it overtime or as a child. PoTs is different for everyone, some individuals can faint multiple times a day, use a wheelchair and need a full-time carer others may not require mobility aids or as much assistance but still deal with many of the symptoms daily.

In my experience I’ve always had signs of PoTs such as migraines and problems regulating my temperature. When I was little, I was notoriously known for my bright red cheeks, I was just constantly flushed and too hot. My symptoms mainly started during puberty however I was only diagnosed in November of 2021 at aged 18. I initially noticed that I struggled more than my peers in terms of standing and fatigue, but this became more apparent when I started sixth form and I consistently struggled to walk up the stairs and make it through the day without feeling very ill.

Naturally I turned to doctors with lots of questions as to what was causing these symptoms and innocently, they were brushed off as anxiety, hormones, and a result of puberty. They continued to run several tests that all came back normal, and it wasn’t until I was sent for a tilt table test (the most common diagnostic tool for PoTs) that we figured it out. Unfortunately, my personal experience is similar to most people’s experience with getting a PoTs diagnosis with the average diagnosis time being 4 – 6 years!.

Every day is different

Recently I fainted in my bathroom which led to a concussion and hours of vomiting, as well as a trip to Accident and Emergency at the hospital. Other days I’m able to go to Uni, socialise and complete everything I need to do that day comparatively effortlessly. Every day is different! Nevertheless, having an inability to stand for long periods of time makes everyday life difficult; for instance, cooking, cleaning, walking, shopping, and even small everyday moments like standing chatting with an acquaintance in the supermarket.

The common rarely talked about condition

PoTs is a rarely talked about condition, doctors are only now learning about this condition and many people have never heard of it before even though it’s not as uncommon as people think, which makes gaining support for PoTs really difficult. 90% of patients with PoTs will respond to treatment, but only a handful are offered it or have access to it; this makes raising awareness of this condition vital. I have found that in most doctors’ appointments, I have to explain to the doctor briefly what PoTs is, otherwise I’m met with a clueless stare which can sometimes mean I get the wrong treatment. Nevertheless, this can be changed by raising awareness about what PoTs is and people’s varied experiences with it, consequently, generating more funding for research and clinics.

How you can help me

As someone who requires a seat most places I go, a problem I often face is not having a seat or an opportunity to sit. People see a young, healthy woman when they look at me. Awareness of hidden disabilities, and more specifically PoTs, is still poor. PoTs is a rarely talked about and an unrepresented condition, which means when I need help or assistance, I can’t always access it, even in hospitals and healthcare settings. So, the best thing you can do for someone like me is to learn about PoTs, either by listening to people’s experiences with it, researching it or reading a blog like this. Having a knowledge of this condition can make a massive difference to people with PoTs and can hopefully help inform future healthcare!

I hope this blog gave you some insight into this condition: it can be really debilitating for people like me but with more awareness we can strive for better treatment options and hopefully more awareness for the general public; not everyone who looks healthy is. Additionally, if you would like to know more about PoTs there are some wonderful and informative charities and articles available:
PoTs UK – https://www.potsuk.org

Standing up to PoTs – https://www.standinguptopots.org

About Skye

Skye is 19 years old, studying Psychology at University. She hopes in the future to become a clinical psychologist.

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