Allergic to gravity

Allergic to gravity

Have you ever stood up too quickly and everything in front of you has gone blurry? If so, you’ll understand the feeling central to my illness. I call it being allergic to gravity, but officially it’s known as Postural Orthostatic Tachycardia Syndrome (POTS). This falls into a category of illnesses called dysautonomia. And, since October is dysautonomia awareness month, it seems as good a time as any to write about POTS.

POTS is a relatively new name (1982) for a syndrome that has been known about since at least 1871—it’s only now being taken seriously by the medical community and there’s still a lot of research needed. Many general practitioners have not heard of POTS, and many of those who have do not believe it exists. I’ve experienced this myself: a couple of months ago, I sat down with a doctor and told them about my symptoms. Despite having an official POTS diagnosis, and a thorough record of my heart rate spanning two weeks, she still proceeded to tell me that my symptoms were the result of not exercising enough, and were not an illness. And I am not alone in having this experience—hence the very clear need to raise awareness.

I am not actually allergic to gravity, although when I’m feeling tired this is how I explain it. POTS has many symptoms and is different for everyone, but central to the condition is orthostatic intolerance. Put simply, this means that whenever someone with POTS stands up or moves into a more vertical position, blood rushes to their feet and their heart has to beat harder in order to continue pumping the blood. This can lead to anxiety, sweating, nausea, headaches and even fainting, when POTS patients are not horizontal. When a person without POTS changes position, their blood vessels constrict so that blood remains evenly pumping around in their body, but in POTS this does not happen—so gravity takes effect. For many, it occurs due to having a lower volume of blood (hypovolemia).

To get a little more scientific, and understand why this is dysautonomia, we need to know more about the autonomic nervous system (ANS). The ANS is the system that keeps our body ticking over in a healthy equilibrium: it controls our heart rate, respiratory system, digestion, and most of the functions that happen unconsciously in our bodies. This system is split into two parts: sympathetic and parasympathetic. The sympathetic system is regarded as the fight and flight system, whilst the parasympathetic system is known as the rest and digest. In a healthy body, both work in equilibrium to inhibit each other. So, for instance, you nearly get hit by a car, the sympathetic system sends out adrenaline, and the parasympathetic counteracts that to calm you down.

However, in a POTS person, this system is out of balance, with the sympathetic system overpowering its inhibitor. This is why, given even the smallest trigger, the sympathetic system goes into overdrive, which produces the POTS symptoms. The clearest example of this is when we change body positions. When you stand up, the sympathetic system triggers the production of adrenaline and the parasympathetic brings these levels down once the chemical has done its job. In somebody with POTS, the sympathetic produces far too much adrenaline, and the body reacts to that with only minimal intervention from its inhibitors. This causes the main symptoms of POTS: dizziness, heart palpitations, shaking, sweating, weakness, fatigue, headaches, poor sleep, nausea, chest pain and regular fainting.

Obviously, POTS impacts everything in a person’s life. To get my diagnosis, I had to monitor my heart rate, and other symptoms closely, for two weeks. I was shocked by the results. A healthy heart rate should be between 60-90 beats per minute (BPM). My heart rate rose to 140-150 BPM while washing the dishes, 170 BPM whilst in the shower, and 130 BPM when I stood upright, almost every time. Lifting my arms above my head raises my heart rate by 10 bpm. Not surprisingly, this means that just to live through a normal day feels like I am constantly running a marathon while dizzy and slightly dehydrated.

Unfortunately, there is no miracle cure. I can’t just go to the moon and avoid gravity! The advice that doctors give is to drink water, eat salt and avoid standing for long periods of time. I have also recently been prescribed thigh length compression socks. These hug your legs so tightly that they not only give you skinny legs but also help to keep the blood from pooling in your feet. Besides these things, however, there is very little to be done. So most of my life nowadays is spent lying down—or trying to work out how I can avoid standing for too long. I sit in the shower, squat while waiting for the bus, always use the self-checkout where the queue is shorter, and need a seat on the tram.

POTS as an illness is hugely under-represented, under-diagnosed and largely ignored worldwide. It is an illness for which there are many possible supports, but the majority are insufficiently researched, so are not widely available. It is an illness which does not automatically give you access to disability benefits, wheelchairs or compression socks, because people are not aware of its severity. It is an illness that does not make you look sick, or empower sufferers to use the disabled seats on buses without abuse. Yet it leaves people housebound, frequently fainting, and unable to work. It is in every way an invisible illness, and that is something which has to change if we are to give its sufferers a fair chance.

To learn more about POTS and dysautonomia, click here.