Monique

My name is Monique and I am 18 years old. It has taken 18 years to be diagnosed with EDS and 4 years (possibly longer) to be diagnosed with PoTS and Vasovagal syncope. I was born in the UK but moved to Australia with my older brother and parents. I was 6 years old when I first fainted. It was Australia Day and we had been to a ceremony as we had received our Australian citizenships. It was very hot, and I fainted in a restaurant bathroom. We were all shocked but put it down to heat.

We moved back to England, and I fainted once a year since then. It would either be due to heat, pain or some reason that made sense at the time. I started secondary school but unfortunately from year 9 – year 11 I was bullied every day, both physically and mentally by kids in my year group. The school was unhelpful, I did not want to go. In year 10, I got shingles due to anxiety. 

In 2017 I started periods which were heavy. I would get home and just sleep constantly. We went to the doctors, and I had blood tests. They showed that I have low iron deficiency anemia, so I was put on iron pills but was still fainting and feeling rough.  

I woke up on the floor

In July 2019 I was standing at the tailors, in high heels getting my waist pinned in a jumpsuit. I felt a bit dizzy, saw floating lights and had a sinking feeling in my stomach. I woke up on the floor not knowing what had happened and my mum said I swayed to my right and banged my head on their glass counter and nearly went through the glass, I then fainted again. An ambulance was called, I was checked over, but they said I fainted due to anemia.  

The following November, we were in Japan and had to get a train as we were late for our tour bus. The second it pulled up I got that familiar feeling and said I feel faint. My mum pulled me on to the train, which was busy and cramped, so that when I did faint, I could not go anywhere. At the next stop, I was dragged off and sat on the platform. We were at Shinjuku station which is one of the busiest stations in the world. I was still cramped and hot so passed out again. The lovely staff had seen me on CCTV so got a wheelchair and took me to their sick bay. We were now wondering what was wrong but then COVID hit. 

I have an EHCP and I’m level 2 beauty qualified but due to problems at college, I wished to continue level 3 beauty at a private college. After countless meetings and my mum fighting for me I was awarded the level 3 course at a private beauty academy paid for by the education authority. Due to COVID the course kept getting delayed, eventually starting in August last year. I was informed that I would start that Saturday but there would be no air conditioning. In addition to that, I would have to wear gloves, a mask, and a visor at all times! I was worried and had been feeling worse.  

Two days before I started, my mum took me for lunch. I was standing in the sun and when we got in the restaurant after sitting down, I fainted! I did not want to attend the college, but my parents had fought so hard for me to attend that I had to go. I struggled the whole first day but didn’t faint. 

The hospital only did half the tests

Then on my second day, after I had been there for 30 minutes, I felt faint and told the teacher who said I would be ok, but then I fainted and woke up halfway across the room. She rang my mum and said whilst we waited I had to continue practicing the treatment on a polystyrene head! When mum picked me up she took me to hospital. They ran tests and said it might be something to do with my heart as when I faint I turn grey, and my lips turn blue. We spoke to my GP who had the test results and apparently the hospital only did half the tests and hadn’t checked for all different things which left us feeling lost and unsure.  

On my 18th birthday we went to Cornwall. On a cliff walk with my dad, I fainted for no reason. After this my grandparents paid for me to see a cardiologist privately. Dr Beaton did a standing and sitting test. He said he believed I had PoTS and Vasovagal syncope. I then found a syncope specialist called Dr Boon Lim. When I first saw him last October, he was certain I just had vasovagal syncope as I have extremely low blood pressure sometimes 81/51!  

My results came back

I was put on midodrine, was taking my blood pressure readings daily, and kept a record of my symptoms which were; severe headaches, stomach aches, lightheadedness, dizziness, pale skin, purple eye bags, fatigue, my legs/ hands turning blue/purple and feeling my heart race. I had a tilt test to check if I had PoTS. My results came back positive for PoTS and vasovagal syncope. I was not surprised but knowing why I was having these symptoms helped. Upon telling Dr Lim he then asked if I was double jointed, and I was but didn’t know/ Apparently, my blood vessels are saggy balloons and that’s why I have always fainted! Knowing what I have has really helped.  

Having a supportive family and a knowledgeable specialist has finally given me the confidence to live again.