Together we can shine light on those in the dark

My name is Jay, I'm 28 and in April 2021 I started my challenging journey.

 

Before I share my story, I want to thank you for taking the time to read my story and to say that I'm doing this, to do my best to raise awareness for those suffering with these diseases.

 

One night in April, I got a twitch in my finger.  Then, one evening, I suddenly developed a tremor in both hands and I couldn't control it. I went to A&E that night and they believed I'd had my first seizure. I was told typically new initial seizures can be a sign a big one is on the way. I spent the next two weeks terrified waiting for it to happen.

 

Two weeks later, the twitching stopped and the tremor had calmed down. Next morning, I woke up to the most unsettling feeling I've ever experienced. It was like I went to bed in one body and woke up in another. I was hit with this wave of dizziness, light-headedness, balance problems, brain fog and what I can only describe as vertigo but wasn't "true vertigo". Without the help of my partner Liv, I could barely walk, get out of bed, or just function in general.

 

More symptoms kept coming, the feeling of movement when not moving, seeing white spots in my vision, my eyes kept moving rapidly especially at night and I couldn't focus them, my tremors came back lightly in my hands, as well as random muscle twitches.

Have you ever leaned back too far in a chair, when it was about to tip over and had that second of panic as you lunge forward trying to stop yourself? Or come off of an elevator and felt like the floor is moving under your feet? It was like that, all day, everyday.

 

I saw a Neurologist who said he was 90% sure it wasn't serious but 10% chance that it could be something more severe, he mentioned many diseases, one of which was Motor Neurones Disease. I remembered the ALS ice bucket challenge a few years back, I'm sure most of you will remember. Although it was a tiny chance that that's what it was, I have never been more terrified in my life than at that point.

 

I then had months of different tests and scans, which were clear. However, I couldn't shift the thought that 1100 people in the UK alone are diagnosed with this each year.

 

For months my symptoms continued. I saw specialist after specialist and eventually, after about eight months of the unknown, I had a breakthrough which all the specialists agreed on.... Vestibular Migraine. What is that??

 

I've always suffered from Aura Migraines, but this was new. Vestibular Migraines are caused by a nervous system problem that can damage your vestibular system (which controls balance). My ears and brain stopped communicating! Although very relieved it wasn't serious, it has been life-changing. I've been extremely lucky with my symptoms, but many people with these migraines aren't so lucky. They can experience full vertigo for days/weeks/months at a time with no ease and can't live an everyday life.

 

I've managed to get symptoms under control and I'm nearly back to normal life now. I'm so grateful it wasn't any worse and now I want to use my experience to help others by raising awareness of these diseases.

 

So what am I going to do?

 

I'm taking on the Conqueror challenge, a 149 mile virtual walk down the great ocean road in Australia. I'll be doing this from 1st to end of June.

 

It's about 11,500 steps a day, which might not seem like a challenge, but since this started last year, I've done on average 928 steps a day, so it will be tough!

 

All the money raised will be split equally between two charities, the Migraine Trust and Motor Neurones Disease Association. I've left links below.

 

https://migrainetrust.org

https://www.mndassociation.org

 

So little is known about these diseases and both are very difficult to diagnose and treat, with no cure for either. So many people spend months if not years in the dark. They need our help so these fantastic charities can continue research to learn more and understand the diseases and find new treatments.

 

I thank everyone around me who has been here to support me. I now ask you to stand with me to help support those going through these difficult and life-changing times and give whatever you can to help. I would be so grateful, if you would share this with your family, friends and colleagues.

 

I'll be walking in the Essex area, mainly in the evenings. If you'd like to join me one night, let me know.

 

Thank you!

 

Jay