Neurological Research Priorities

How things are moving forward, where we stand and what could we consider differently?

This is the final part (part 3) of a 3 part series that I’m sharing with you, following this year’s Migraine World Summit event.

---

Over the weekend, I began to read a new book. One that’s taken me 6 years of research to find. All In My Head written by Paula Kamen is a memoir of “an epic quest to cure an unrelenting, totally unreasonable and only slightly enlightening headache”.

Printed in 2005, the journey of her research first began in 1979 with a science project in school, way before her life was first consumed by chronic pain. I’m first few chapters in to a 300+ page book, but what’s blown my mind is that the major treatments of pain back in the 70’s are still the major treatments of pain today. Not only that, despite there being more treatments widely available than ever, they continue to prove as ineffective (on their own) over the long term as they always have been.

1.      Drugs

2.      Biofeedback

3.      Acupuncture

It isn’t often I connect with someone whose knowledge and understanding of migraine disease rivals my own. So much research is packed into the early part of this book. I can’t imagine what life was like undertaking research to this extent pre-internet days. But one thing I do know is that we’re still living in times whereby this level of knowledge is still unknown to most healthcare professionals, including neurologists and those whom we are referred to as specialists when it comes to migraine and headache.

On the cover this book is described as a “must-read” to chronic pain sufferers. So far I’ve only come across one person who has read it and it came up under none of my searches for memoir (memoir being my favourite and most widely read genre).

Photo by 🇸🇮 Janko Ferlič on Unsplash

On the back of the book its described as “equal parts memoir, science journalism and cultural critique. It looks at the headache and its treatment from every possible angle”.

Which takes me on to my main source of research, the Migraine World Summit. There might have been some (a little) change in the medical field, but this is one big change the world has seen when it comes to creating movement within the field of chronic pain and chronic suffering.

1 of 3 interviews I watched earlier this year was the first to be aired as bonus material on “Neurological Research Priorities” with Dr Walter Koroshetz, MD.

Let’s dive straight in

Dr Koroshetz feels the focus on reducing the global burden of disease is going well.

“Group investors are studying. There is lots of interest from industry. Treatments are being developed.

Most neurological disorders don’t have effective treatments.

There is a long road ahead.

Previously, a neurologist couldn’t do anything other than diagnose. Now they are able to treat disease.

There has been an increase in headache specialists due to new therapies that can be offered to treatments.

There is a mystery in migraine as to what’s malfunctioning and it isn’t understood what’s causing it.

Migraine should attract interest because if a person can crack migraine and really understand it, it ties a lot of the nervous system together. What’s going on in the brain and the tissue. How it interacts with other parts of the body. How these cycles occur. So many mysteries. If understand migraine would probably understand a lot of the rules the brain is working under.

There are 450 neurological diseases.

Investigators are encouraged to work with patient led advocacy groups, ensuring diversity.

There are better medications for different pain conditions.

It is hopeful a cure will be found in the next few decades. Better therapies are coming.

Migraine has the worst funding for life/time lost due to this misunderstood disease.”

This topic was particularly triggering for me to watch and even though it was the first interview documented, it is the final part I share with you today. It’s really important to me to share from a grounded and balanced place, in flow. So it’s taken a while!

Dr Chatterjee shared in Instagram a while back how its unfortunate that whilst our healthcare system is there to save lives and treat disease, it is not there to create health.

When I am in a grounded and centred state, I don’t so much feel this is unfortunate, this is our reality. It will surely serve us to recognise, understand and accept this. To become aware of this much sooner and earlier on in our journey.

The lack of education and insight into this being the case and, for many of us, to have experienced so much medical gaslighting, dismissal and trauma as a result has devastated the lives of many of us in the chronic illness community. To acknowledge this after all many of us have lived through and endured can be deeply upsetting. Yet if we are aware of the priorities and limitations of the healthcare system earlier, this could change a lot in the way we look at, pursue and work with work such services. Imagine the burden this would reduce, not only on the already drastically challenged NHS (here in the UK), but the burden on ourselves too?

When you consider it from one perspective, we are fortunate to have such services in place, particularly in the UK where we have the National Healthcare Service. And of course, if you know of anyone who has had their life saved or the life of family members then we can appreciate this all the more.

The lives of mothers and babies that are now saved that once upon a time would have been lost. The broken limbs that are plastered and with protection and support around them to heal. The revolutionary operations, treatments and medications that transform and extend the lives of many millions all around the world.

Photo by Sarah Ardin on Unsplash

As Dr Koroshetz states “There has been an increase in headache specialists due to new therapies that can be offered to treatments”.

In the UK there are 68 migraine trained headache specialists. There are 10 million suffering with this complex disease.

How do we alleviate this burden?

As a direct result of organisations like the Migraine World Summit, access to research is becoming much more widely available. Patient advocacy is like never before.

Whilst at the present time, we are encouraged to take our research and findings to our healthcare providers, we can advocate for ourselves in other ways. In respect of

• learning to validate ourselves

• making informed choices

• identifying our needs and

• finding new ways to put in place measures to meet these needs.

We have 450 neurological diseases and whilst interest from industry continues to increase and more treatments are being developed, it continues to remain the case that most neurological disorders don’t have effective (long term) treatments.

What if treatment is ineffective because our condition is not structural and whilst there is a physical component, so too, there are mental, emotional and even spiritual and financial parts that are being overlooked under medical care?

Evidence of early childhood trauma is so prevalent in chronic ill health and autoimmune disease, it continues to mount and can no longer be ignored. As Gabor Mate states, “it’s not what happens to you, it’s what happens in the body”.

That said, when we consider that brain abnormality is the most widely known medical root cause of migraine disease, alongside the less known inability to regulate emotions perhaps we can start to connect the dots with trauma from this angle and the picture will look entirely different?

To understand migraine in the way that the medical industry is trying in earnest, surely we’d have to look at the person as a whole? Whilst we continue to look at it from a rules, formula, manage, control, fix and singular perspective, we will continue to progress as slowly as we have.

It was Einstein who said it best

“Insanity is doing the same thing over and over again but expecting different results”

The Holistic Psychologist maintains that a dysregulated nervous system is the root cause of all physical and mental illness. Unregulated emotions are one aspect of a dysregulated nervous system.

Final reflections

There is a lot of focus on figuring out where it comes from in the brain. What if its not coming from the brain? What if its coming from the body? The other parts of our body in addition to and outside of the physical. For example, the emotional and energetic body. Parts of ourselves that have long since been known about (and forgotten).

It is great to hear there is an aim to bring lived experience into industry research from the beginning. Particularly after all this time of clinical medical trials being carried out on men only. But have these patients recovered and/or healed themselves? Where is the research being carried out on those who have recovered?

It is also great to understand that better medications that alleviate pain in a non-addictive way have been introduced, but what would happen if we learned to let go of the fear we have around pain?

A note on aftercare

I know from experience that how information and research lands in my nervous system can be different every time. The other year I was deeply triggered by the excitement and enthusiasm of one of the speakers in her discovery around just how significantly so many millions of us are affected in every area of our lives. It was recognition of our suffering and the impact this has in our relationships, family, work and socialising. Yet it left me feeling angry, irritated and annoyed that it has taken so long to work this out.

My point being here, to please take care of and look after yourself. Digest this information slowly and steadily. Journal on it, reflect on it, tune in to how it lands with you, how it feels in your body. Take what resonates and leave what doesn’t. Speak with a trusted person/professional; someone who can hold space for you and that helps to support you with needs and queries that you have.

I am not a medically trained person. I simply share with you my research and findings combined with lived experience. My intention is to inspire and gift hope with a reminder that you matter, your health matters.

---

Related reads

---

My greatest passion is to help others who live with chronic illness find their voice. I am here to share with you my research and findings combined with lived experience. With an aim to inspire and gift hope.

I am not medically trained and do not offer medical advice.

I am someone who found myself on a healing journey as a result of disability by invisible illness back in 2018. Burnout and chronic illness paved the way for me to live a life of full self-expression, a life I now live “on” purpose. This is my way of giving back.