In my earliest blog posts, I think maybe the second or third on this website, I reference POTS – Postural Orthostatic Tachycardia Syndrome – and briefly mention that it was such a huge part of my life, a health condition I was silently battling. But other than that, what is POTS, who gets it, how do we treat it, and how does it affect my life?

DISCLAIMER A lot of the information I provide in this blog post is from my research and how it affects me personally, but of course, this condition will affect many people in many different ways.

Postural Orthostatic Tachycardia Syndrome, or POTS for short, is a cardiovascular autonomic disorder that affects less than 1% of the population in the UK. It is not a well-known condition, and there is very little research surrounding it. It is potentially linked to long COVID and a wealth of conditions that affect one’s immunity, meaning it could potentially be an autoimmune disorder; however, as there is so little research into it, these findings are just a guess.

POTS is a type of dysautonomia, a failure of the autonomic nervous system in the body; or where the nervous system does not work as it should. It is responsible for pretty much everything we don’t do consciously; digestion, breathing, heart rate, body temperature, blood pressure, sweating, etc. What a failure of this system means is that your body is unable to control these functions correctly itself, and can often misinterpret signals sent by the brain. Although POTS is a condition that DOES affect the heart, it is not a failure of the heart or any organs in the body.

So, how did I know I had POTS?

Well, I didn’t!

My symptoms started in February 2024, and I remember the day they started. I was walking up the stairs at work, and all of a sudden, genuinely out of nowhere, I felt incredibly lightheaded, dizzy, nauseous, shaky, and my heart was pounding in my chest. Weird. At first, I thought it was a panic attack, so I went and sat myself down, got some water, and just tried to relax, but the symptoms didn’t go away. I thought I was going to pass out. Within 30-40 minutes, the symptoms had subsided and colour had returned to my face. I felt normal, but I was weirdly exhausted, so I took it easy for the rest of the day.

Naturally, I didn’t think too much of it; yes, it was an awful experience, but I genuinely thought I was just having a nasty panic attack, as I had one similar a few years back. But the next day it happened again, twice, and this time even worse, taking me longer to recover and almost knocking me off my feet. It was the dizziness and palpitations that got me – I honestly couldn’t stand up.

I booked a doctor’s appointment the next day. I had noticed that the symptoms were occurring around similar times of the day, close to meal times and were a lot worse when I was hungry, so I suspected diabetes. The doctors looked me over, checked my blood sugar: that was fine, heart rate and blood pressure on the other hand… they were not fine. My resting heart rate was over 130, and although I wasn’t experiencing any symptoms, the doctor was rightfully concerned. My heart rate had always been quite high at the doctors, so I told them I must have “white coat syndrome” (anxiety-driven symptoms at the doctors), but she wasn’t comfortable with that conclusion. She made a note and drafted me a letter instructing me that if the symptoms were to happen again, go straight to A&E and hand in the letter, as it would make me be seen more quickly. And with that, I left the doctors and carried on my day as normal, just feeling a little weird. Not quite right and painfully exhausted from doing the smallest things.

The next day it happened again, and each time it did, it was getting harder and harder to deal with. Same time too, just before I was about to eat some food. I told work and they immediately told me to go to A&E, but I couldn’t walk as my symptoms were that bad. I was shaking, sweating, then freezing, dizzy and unsteady on my feet, all whilst my heart was pounding out of my chest. I rang my mum, who raced to come and get me, and my lovely colleague Beth helped to carry me out of the shop. I was in good spirits! I joked that if I died in Tesco, I’d be annoyed, but that they better build a statue to remember me. She was not amused.

My mum took me to the hospital in a wheelchair because by this point, I had lost all the strength in my body, and I was fighting not to pass out. I handed the letter to the receptionist, and within minutes, I’d be called in for tests. I got wheeled to a back room called “Resus” (resuscitation room), and I’ve watched enough medical UK dramas to know that if you go in there, shit is pretty serious. My heart was racing more now, but I tried my best to stay calm as I knew panic wasn’t going to help.

They hooked me up to an ECG, gave me a cannula and told me to lie as still as possible, which, when your body is violently shaking without your control, is hard. They took my ECG, and my heart rate was something stupid like 160-170 BPM at rest, so at this point, the doctors were pretty worried. I got checked into the ward and monitored very, very closely. I had about 8/9 vials of blood taken, an X-Ray and 4 more ECGs.

By this point, I had been in the hospital for about 3 hours, and my heart rate hadn’t come down at all. Every time I moved, it skyrocketed, and everyone on the ward heard it too, as I was hooked up to a monitor that bleeped every time my heart rate peaked high. I was starving, tiered and pretty damn scared. A couple of hours later, and still no change, I was seen by a cardiologist who told me that I was not leaving tonight as I was clinically not safe to go home… great! So, I spent the night in the hospital.

Now I love the NHS, but they aren’t a bed and breakfast and staying on an emergency ward (as there was no room on the cardiology ward) was pretty harrowing, but at least I had a bed, a private cubicle, and my Nintendo Switch to pass the time. I would say it was warm, but my temperature was fluctuating from freezing to roasting very quickly.

I had a horrific night’s sleep. I was woken up every 30 minutes to check I wasn’t dead or dying, do my temperature and “OBS”(observation of vitals) as they call it in the medical field. I was also sleeping with the consistent BLARING of my heart monitor on which again skyrocketed every time I moved. My heart rate was having real trouble staying below 130. At one point in the night, one of the tags from my heart monitor must have fallen off as I was greeted by the crash of my curtain opening and a man going “HELLO, CAN YOU HEAR ME” at around 3 am. I grumbled at him, he apologised, but in the background I could hear that my heart monitor had flatlined, and this gentleman was attempting to very carefully stick the monitor back on my chest. I think they thought I died. Fools, I’m not dying that easily.

Anyway, morning (6 am on 4 hours sleep yay) came around and I had toast and tea. It was at this point that I was told I was a medical mystery, as there was no clinical reason for my heart rate being this high and for having the symptoms I was having. It was worse standing up; that’s all they knew. Otherwise, I was in “perfect health”. Brilliant. Of course, things are never that easy when it comes to me.

I was sent home at 5 pm that day after some more monitoring, and prescribed a drug to slow my heart rate down because it wasn’t possible for my body to do it by itself. I googled the medication (WHATEVER YOU DO DON’T DO WHAT I DID) and it told me it was to treat chronic heart failure…. Nice. Obviously, I didn’t have that but I really was starting to feel like a granddad. I was also referred to cardiology, but told my wait would be one year.

One whole year of feeling like this? No thank you but thanks anyway!

Weeks pass and I’m not getting any better, so I book to see a private cardiologist that my mum kindly offered to pay for. This man was a genius, and he said I wasn’t the first person he had seen with symptoms like this. He knew immediately what it was but had to confirm it, so, he booked me for a “tilt table test” or as I like to call it, “the most miserable hour of your life suspended at a 60 degree angle strapped to a table” (sounds like something from a naughty novel?).

It was necessary, I know that, but I thought I was going to die. What the test involved is strapping you to a table head to toe, and suspending you at a 60-80 degree angle and leave you there in silence! Now the doctors are there monitoring your heart rate and vitals etc., but its dark and it’s so miserable. It lasted for what felt like an eternity, and I was so close to passing out that I WENT BLIND for about 2 minutes, so they had to stop the test earlier than they wanted, but they said that they had enough information. I went home, battered and bruised (not literally), but they did give me several biscuits after, as I was not allowed to eat for 4 hours before the test. The sad thing was I didn’t have the energy to eat them.

A few weeks passed, and the results were IN. Sadly, not the winning lottery results I had hoped for, but the results of the tilt table test. The outcome? My body had a meltdown. He said my heart rate was ~170, and my blood pressure dropped to a “dangerous level” of 86/61. I don’t know what that means; I just know it feels awful, and it shouldn’t be that low.

By this point, for reference, day to day, I was miserable. I couldn’t stand up, I couldn’t walk, I had to lie down 24/7 because otherwise I would almost pass out. How boring. It affected every single aspect of my day-to-day life, and I became entirely reliant on other people to help me. My family and partner had to cook, clean, and wash me because I was physically incapable of doing it for myself due to the sheer toll that merely standing up had on my body. I missed walking and doing the things I loved, and my mental health took a hit too.

The good news was, it was only up from here. I was officially diagnosed with POTS, as well as Orthostatic Hypotension (low blood pressure when standing), which explained why I felt so awful when I stood up. Not only was the blood in my body working against gravity, but it was also working in a system that didn’t do what it needed to do to keep the blood flow to my brain.

I started beta blockers to slow my heart down, and things got better. I became more active, I was able to do more for myself, but things still weren’t right. I still got exhausted, I still felt dizzy and unsteady on my feet, so I had to see my cardiologist again. Luckily for me, he knew exactly what it was and how to treat it.

We are now in August 2023… Yes, that’s right, 6 months of no treatment and being unable to live independently. It tested my relationships with my family and my partner, but we had made it through.

The second week of my bar course, I was prescribed Midodrine to go along with the beta blockers. I take them 3 times a day, and they are little miracle pills. Don’t get me wrong, I am not cured by any stretch of the imagination, but I can function day to day.

So, how does POTS affect me now? Well, quite a lot.

People with POTS need to be super careful, even when medicated, because all the medication does is help your body control those things it can’t already, but it doesn’t cure you. I have to be so careful when doing exercise, walking, in the heat and the cold, as all of these things make my heart rate and blood pressure worse.

Just last week, as I am writing this, my partner and I went on a walk. It lasted about 3 hours total, and by the time I got home, I was dead. The room was spinning, and I couldn’t talk or stay awake because my body had shut down due to orthostatic hypotension. Thankfully things like this don’t happen often, but it is so important for me to keep well fed, lots of salt and electrolyte drinks to keep blood volume up, and more than that, its all about planning ahead.

I’m usually really good at keeping snacks and water on me to keep me fuelled, but the times I’m not, it affects me quite a lot, and I get very ill. The main sign for me that something is going wrong is the colour in my face drains. If that happens, we are past the point of no return and now the rest of the day is a write-off until sleep sorts it out. Strictly sofa and water for me, and hopefully a nap. Sleep is brilliant, but honestly, I was so exhausted at the height of my symptoms, I would randomly fall asleep whilst sitting down and have no recollection of it. I would rest my eyes for a brief second, and before I knew it, it was 4 pm. I get exhausted very easily, even now, and I can remember sleeping for 12 hours one night and feeling like I hadn’t slept a wink.

Having more than 10 hours of sleep a night is quite common for me because my body is just that exhausted trying to deal with this condition.

For me, one of the most important things, its food; if I don’t eat for a while, I am in trouble as my body just shuts down. To an outsider, I just look hangry, but I shake and feel nauseous and hunt and hunt for something to eat. I’m not quite sure why I get so unwell, but I think it has to do with the salt content helping to keep blood volume up?

Other things that are important, limiting caffeine!! Lucky for me, coffee isn’t majorly important for me, I drink one in a blue moon, but I can’t have energy drinks, or ones with high caffeine content anyway. Again, not too big of a deal as I can still drink several thousand cups of tea, so long as I don’t get the caffeine jitters, which I never do. I always say tea has such little caffeine in it but I’m not too sure that is correct?

The conclusion.

All jokes aside, POTS is an incredibly debilitating condition, and even though I am correctly medicated, it still affects every aspect of my life. The purpose of this post is to raise awareness. I know one other person who suffers from pots, and when you consider less than 1% population have it, that’s pretty damn rare.

Having people be more aware of POTS and specifically having my friends know about my POTS is important to me, especially when doing stuff together. Science doesn’t know specifically how POTS develops, some say it’s a part of your body attacking your nervous system, others say it’s a form of long COVID, but the truth is, there isn’t that much research.

There is such a huge stigma around POTS, and quite often it is misdiagnosed as anxiety disorders. Because often times there is no clinical reason for your symptoms, it is just passed off as all being in your head, and it’s breaking because you know that it’s not. Thankfully, my experience was one of puzzlement rather than dismissal of my symptoms. The doctors had no idea what was wrong, but knew it needed looking into as I was unwell.

So what is the takeaway?

As cliché as it sounds, I guess it is don’t judge a book by its cover, and a key example of that is not all disabilities are visible. To an outsider now who doesn’t know me, I look fit as a fiddle, but I am not, and quite often I struggle with day-to-day tasks if I don’t control my symptoms well enough.

For me, though, it’s about awareness. Many, many people write similar posts about their experiences with POTS, and this is just mine, spreading awareness as to how the condition affects me.

I’m sort of a physical embodiment of the Snickers advert: “You’re not you when you are hungry”, except this time not as cool as Mr Bean turning into a samurai, just me being able to stand up again without falling over!