3rd May, The long road to diagnosis, Part 2

*Please Read Part 1 First*

The first time I had a migraine was during the Easter holidays in 2010. It was unlike anything I’d ever experienced, and not in a good way. I vaguely remember being curled up in a ball in the dark on my bedroom floor and Mum telling me to go to bed. For anyone reading who hasn’t ever had a migraine; you are incredibly lucky, they are horrible and I wouldn’t wish one on my worst enemy. Unfortunately this migraine was the first of many. I began having them regularly and for the next couple of years I had migraines of varying length two to three times a week. The longest migraine I have ever had lasted 7 days.

As if chronic migraines, fatigue and pain wasn’t enough, the migraines brought a number of other problems with them. I was put on prophylactic tablets which caused me to dramatically loose weight so I looked like I had an eating disorder, and I was regularly asked, and even harassed, about my eating habits, which was the last thing I needed at the time. I was eventually taken off these tablets after being hospitalised with an uncontrollable twitch which they had caused. I was also tested for a number of possible causes, including a brain tumour, which was incredibly scary for a 15 year old.

As well as causing more health problems, my migraines prevented others from being sorted out. in the summer of 2011, just a few weeks after I had finished my GCSEs, I was admitted to hospital with appendicitis. After taking my history and learning I had chronic migraines the doctor (mis)diagnosed me with abdominal migraines and sent me away. Two years later I was rushed in to hospital to have an emergency appendectomy, having had a grumbling appendix for 2 years. This was the day after my last A Level exam. For those two years I had thought my migraines were the cause of my health issues but it turns out they were a symptom (kind of); the stress that my appendix was putting on my body caused them to be a lot worse than they would have been if I had had an appendectomy in 2011. I still get migraines, but since I had my appendix removed they haven’t been more frequent than once a month.

During my teens, I also developed an egg intolerance, would regularly get very bad headrush (PoTS), was often anaemic, and seemed to catch every bug that was going around.

Despite all of my health problems, the idea that they were all caused by one thing had never been considered. This changed when I went to University in 2014. I was very lucky that one of the on-campus doctors, who happened to be the one that I went to see, has a sister with EDS. He suggested that I look in to it and when I did everything fit; it explained every single one of my health problems. Even with Dr Clarson’s help it was a battle to get a diagnosis. I found out that there was an NHS Hypermobility Clinic at UCLH but that I needed a consultant rheumatologist to refer me. Unfortunately, the first rheumatologist I saw (mis)diagnosed me with fibromyalgia and refused to refer my to the clinic. Luckily the second rheumatologist was happy to give me the referal.

Even though I always knew I would come away from the appointment with a diagnosis, I was relieved when Dr Ambrose gave it to me. I finally had an explanation and could start to manage my health properly. It took 10 years and several misdiagnosis’ before I got my diagnosis, largely due to a lack of awareness of EDS. This is why I am writing this blog, to raise awareness.

Having a diagnosis has massively improved my quality of life but there are still many challenges I face every day. Now you know the background to my EDS, the rest of this blog will focus on these challenges and how they affect me.


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