Lois, 26
My name is Lois, I am 26 years old, and my PoTS Journey began in June 2019. I had always been poorly as a child, picking up any bugs which were going around and suffering from constant tonsillitis until I finally got my tonsils removed. My parents always said I must have a bad immune system because of how premature I was as a baby, I was born 3 months early and weighed 2lb, 2oz – very tiny!
In my early 20’s, I started to experience frequent episodes of tachycardia as well as other conditions such as Fibromyalgia and Optic Neuritis. The tachycardia always seemed to happen when I was fighting some kind of virus. Each time, I could feel my heartbeat in my throat or head and the chest pain was terrible
In June 2019, I had a great career, amazing friends and enjoyed activities like football or going swimming with my friend. This was the healthiest I had ever felt in my life.
Then, I became unwell with Glandular Fever… Everyone told me how bad it had made them feel, but I kind of shrugged it off because I had felt worse with other illness in the past. I started to feel extreme fatigue, dizziness, palpitations, and I fainted up every time I stood up or changed positions. The blackouts made me sick for hours. I knew this wasn’t right.
Fainting up to 20 times a day
I had multiple trips to the emergency room because I felt like I was going to have a literal heart attack (dramatic I know) and I wanted to know why I was fainting up to 20 times a day! The Doctors did various blood tests, ECG’s, urine tests and found nothing except for a minor irregularity with my heartbeat. No one seemed to be able to explain what was going on.
I set up a YouTube channel, explained my symptoms in a video and asked the public to solve this mysterious illness. The comments poured in saying that it sounded like PoTS.
My partner did some research into the condition and my friend found the PoTS UK website. I broke down in tears because the stories matched how I had been feeling for months.
We struggled to get a diagnosis, so we booked a private consultation with a fantastic Cardiologist, who requested a Tilt Table Test. My Tilt Table Test was positive, and I was diagnosed with Postural Tachycardia Syndrome. The doctors experimented with different Beta Blockers and medications, but I had some bad side effects.
Reducing fainting to a couple a day
The last treatment I had was a long course of steroids, which reduced the fainting episodes from up to 20 times a day to a couple a day now. It’s not a cure, but it helped me to feel better than I did. The symptoms flare up whenever I am in a hot environment, unwell or even on my period. When I leave the house, I still need to use a wheelchair for my own safety.
I have learned a couple of different ways to live a happy life with PoTS:
- Try to understand your limitations. Please don’t feel guilty over the things you can’t do physically.
- If you are standing up and feeling like you are going to faint, you can crouch or lean with your back against a wall to relieve the dizziness.
- A shower stool is a great piece of equipment if you experience dizziness in the shower.
- Find a good support network, whether that is friends or family who understand your condition and include you in the activities you can do comfortably.
I would love to thank my partner Andrew, my family and amazing friends for their kindness and support throughout my PoTS Journey.
If your symptoms are abnormal or weird, and not recognised by some doctors – don’t give up until you get your diagnosis – there is help out there for you.