Living With POTS: My Story

When I was only 12 years old, my life changed completely. I had to stop doing the one thing I loved and hit a very low point in my life.

Now, 8 years later, I am better, happy and coping well on a day-to-day basis and want to share my story of how I was diagnosed with POTS.

What Is POTS?

For those of you who don’t know what POTS is, POTS UK define Postural Tachycardia Syndrome (PoTS) as a “potential life altering and debilitating health condition. Simply standing up can be a challenge for affected people as their body is unable to adjust to gravity. PoTS is due to an abnormal response by the autonomic (automatic) nervous system and is characterised by orthostatic intolerance (the development of symptoms when upright that are mostly relieved by lying down). Symptoms include palpitations, light headedness, fatigue, sweating, nausea, fainting and headaches, and are associated with a persistent increase in heart rate from the lying to upright position.”

My Diagnosis

In October 2011, I had my HPV vaccination at school. Little did I knew, only a few weeks later, things wouldn’t be the same…

At a trampoline competition, I remember saying to my coach that I felt incredibly dizzy before competing and that I didn’t think that I could compete. I did end up competing however little did i know that would be the last time i would get on a trampoline.

It was around 3 years before I was diagnosed with POTS and for those three years I was in and out of the doctors/ hospital feeling constantly fatigued, dizzy, frequently blacking out at school and just feeling generally unwell.

On my second visit to the hospital, after blacking out in school a year later, I was told by the doctors that I had an eating disorder and was depressed therefore needed to see a mental health specialist.

Despite seeing a mental health specialist for 6 weeks, something still wasn’t right and I knew that something was still wrong. I would now be frequently passing out, every time I stood up, ate or overheated my heart would beat uncontrollably, but still nobody had the right diagnosis for me, and the suspected diagnosis list kept growing and I hit an all time low.

I was a trampolinist since I was 4 years old, and I had to give this passion up. I was devastated and I couldn’t understand why I had to give up my passion/ dream because I was feeling so unwell.

Eventually, after arguing with the doctors for months that something was wrong, I was lucky enough to see a neurologist who ran numerous tests including the tilt table test and MRI scans, who finally gave me the right diagnosis, POTS.

When you’ve finally been given a diagnosis after many months/years of battle, it is such a sigh of relief and you can finally see that there is light at the end of the tunnel.

Treatment

Currently, there is no cure for POTS, however, beta blockers are often prescribed for those suffering. I take a low dose of propranolol which treats a number of types of irregular heart rates. But you should never rely on these tablets to help you.

Maintaining a healthy, active lifestyle has dramatically helped my POTS and has abled me to get to a stage where I can reduce my dosage of propranolol.  (please make sure if you are looking to reduce your dosage to see a medical specialist before hand.)

Day-To-Day Life

5 years on, I now have very few blackouts and major symptoms of POTS, however I do still have to give myself up to 30 minutes in the morning to sit up right before getting up otherwise I can feel nauseous and dizzy. During this time, I will either read or go on my phone to pass the time and drink a glass of water; I will then shower and get ready to start my day before starting my university work.

If you have already read my other blog 5 Things I’ve learned In my First Year with The Open University then you know that I am able to study at home around a time that suits me; so if I need more time in the morning if I feel dizzy, nauseas etc then I am able to be flexible around my studying.

I start the day by waking up around 6:30am and making sure I have a solid breakfast which usually consists of a berry smoothie, a bowl of cereal and a yogurt. Around 9am, I will start uni work, then usually around midday I will head to the gym for an hour’s workout. Sometimes going to the gym is a breeze, other times it can be your worst nightmare as even after 5 minutes you feel like you’re about to throw your guts up or pass out on the treadmill. If you feel like this, its usually a sign you should stop for the day and try again tomorrow, but never give up.

At various points in the day I can feel dizzy, nauseous or fatigued. I get through these spells by eating something salty as this will bring my blood sugar back up and give me the boost of energy I need. Great snacks for this are mars bars! These were my best friend in exam season at school!

Some days are better than others, but you should always remember it will get easier and even though it’s not always plain sailing, and I’m telling you, there are some pretty rough days, but I promise you, the good days outweigh the bad, and there is life after being diagnosed with POTS. 

I am now a full time university student, travelling as often as I can and living in a beautiful house with my amazing boyfriend, and the best part is he loves me unconditionally despite my illness he continues to supports me everyday.

If you want more information on POTS, then visit https://www.potsuk.org/

If you would like more POTS related posts pease let me know! Or if you have POTS, comment down below, I would love to hear your story!

Hannah xo

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