Jess Bull Anderson, 23, shares her experience of migraines, memory loss and PMDD – and how accessing the right treatment and support has transformed her life

Migraine has impacted myself and those around me in ways I struggle to put into words. I am so incredibly grateful for the life I have, for the persistence of world class care from my neurologist and my parents - who I can put my hand on my heart and say that I would not be alive without them.

Chronic migraine completely broke me. I’m 23. I’ve had migraine since as long as I can remember. I was a very high achiever at school, always studying with scholarships/awards, straight A* student etc, but over the years my migraine gradually worsened. In sixth form, I moved to Chetham’s School of Music in Manchester, to further my studies of trombone, but I was having migraines and in horrific pain 4-7 days a week.

At this point I was under a couple neurologists and was trialling various treatments for migraine. My studies at Chetham’s were interrupted by lockdown, where I had one migraine lasting over ten weeks. It’s hard to explain the impact that has on someone.

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Going to bed in pain wanting everything to end, and waking up every day to the same blinding, white pain, unable to even walk downstairs to have breakfast. The only thing that really got me through all of that pain was painting - I would enter a fever and paint for hours and hours on end. I was hardly able to attend my classes, but I still managed to be awarded a scholarship to study my undergraduate at the prestigious Royal Academy of Music, probably as a result of all my hard work when I was in better health. I then went on to study at the Academy, but as a result of a number of things - having been in so much pain for the last few years, being severely depressed (diagnosed, I'm not using that phrase colloquially) from being so ill, and side effects from (yet another) medication I was trying for migraine, I had severe memory loss.

I had to interrupt my studies at the Academy as I had hardly any access to my memory, and I couldn't form memories - I forgot how to play trombone, how to read music, how to read, how to use a phone, how to paint, the names of colours, people that I'd known for years. I was a complete shell of a person. I was unable to do basic motor skills too, like walking downstairs. I wasn't able to hold or follow conversations, other than those guided by my parents.

During this time, I came under the care of the eminent neurologist Professor Manjit Matharu at UCL Queens Square institute of Neurology in London, who saved me. He gave me 18 cranial nerve block injections (in my forehead and all around my head) every week, and they were the most painful procedure I've ever had, for months on end. I now have them every 2-3 months.

I was admitted to hospital for a couple of weeks and I had a dihydroergotamine (DHE) infusion, which was one of the hardest treatments I have been given. I was unable to eat, and lost so much weight that when my head cleared, when my memory gradually came back, I was unable to even pick up a trombone as I was so weak. Since then, I have spent what feels like the longest time rebuilding my weight, strength and my life.

I feel like I went through hell and back, but Prof Matharu patiently and calmly unpicked everything, supported me, and brought me back together.

I was also diagnosed with PMDD (premenstrual dysphoric disorder) and my doctor realised that my hormonal changes during my cycle were triggering some migraines so I have been prescribed body identical hormones. This means that my mood is the same throughout my cycle and taking hormones has had a positive impact on my migraines.

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I made all the lifestyle changes I could. I trained in the lightning process, a form of neuro-linguistic programming, I intensely studied Alexander Technique, I regularly visit a chiropractor and have deep tissue massages. I don't eat any ultra processed food, or refined sugars, and the food I eat has a low glycaemic index. I do not smoke and I am teetotal - the list could go on! I now have medication and treatments that work for me. I manage my migraines incredibly well.

I restarted my studies at the Academy, and after that year I moved to study at the Royal College of Music. Next year I am going to do my Masters at the Royal College of Music.

I still have migraine but with the right treatment, management and support, I'm able to have the highest quality of life that I've had ever. I'm able to do exciting things and not be scared of what was an impending doom of pain. Recently, I played principal trombone in a rehearsal with the Bournemouth Symphony Orchestra, one of the best orchestras in the UK. One day I played a recital with an organist, then delivered a recital and talk in a school.

I work with Hackney Music Developmental Trust, positively impacting those I teach, and have assisted in workshops in SEND schools. I have toured the UK and Germany with the National Youth Jazz Orchestra. I have also played at various festivals, including the Wilderness Festival. Earlier this year, I travelled to Florence to play the sackbut (a type of trombone from the Renaissance period).

I’m devising collaborative projects with musicians, composers, and performers for my artwork, and I’m regularly commissioned for new paintings and works. To have gone from thinking I’d never be able to play trombone again, to never be able to paint again, to how I am now, is just unreal to me. I still have migraine but I can’t explain how grateful I am to be able to really live again.

The fact I struggled so much, even with the privilege of both of my parents being incredibly intelligent and successful doctors and having access to both good NHS care and private care, highlights how much needs to be done in way of migraine education, care, and management.

There are so many people suffering how I was, people are still completely broken by migraine. My heart breaks for those who haven’t been as fortunate to have the opportunity to find the right support and treatment for them.

Find out more about Jess at jessbullanderson.com

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