You’ve had migraine for the last 25 years, what myths about migraine would you like to dispel?

“It’s just a headache”; “all migraines are the same”; “they only last a few minutes/hours”; I often hear comments like these. It is not just a headache and the symptoms vary from one person to another.

Here’s my way of describing it: with a headache and a migraine of the same intensity, the headache can be ignored because you can push it to the back of your mind. With a migraine, it paints itself over the front of your senses, and jumps up and down screaming.

It is not just a headache and the symptoms vary from one person to another

For me the migraine aura is the most distressing bit and any headache is a minor issue. However, the opposite is true for quite a few people. I have had migraines that just had nausea and flashing lights for twenty minutes, and more severe migraines lasting several days with loss of balance, nausea, light, sound and scent sensitivity, confusion, pins and needles, numb patches, difficulties in speaking and coordination.

How quickly did you get diagnosed?

I had some fairly obvious migraine symptoms when they first started and my family doctor diagnosed those as migraine very quickly. Had you heard of migraine-associated vertigo before today? Did you know that pins and needles, numb patches or tinnitus can be part of migraines? Me neither!

The diagnosis of the precise sub-type of migraine that I have has changed over time. It took a few months for the balance issues to be confirmed as migraines and in the end it was diagnosed by the Ear, Nose and Throat department.

Have there been improvements in what migraine sufferers can do once an attack has started?

This is where I would say the biggest change has happened. When I first started my migraines the options were painkillers or painkillers with an anti-emetic. If, as a patient, you looked for more detail then you would find ergotamine mentioned. In theory, I believe that there were triptans on the market but they really weren’t on the radar of my family doctor.

Triptans can stop the migraine if you take them early enough in the migraine. They aren’t painkillers; instead they stop the pain by stopping the migraine. However, if you take them too often or go over the recommended dose you can end up with rebound/overuse migraines that are much worse than the original migraine. There are some new classes of migraine treatments in development for people who can’t take triptans which I’m looking forward to hearing about.

What changes did you notice over the years in terms of information and advice on lifestyle?

There is now a lot of information on reducing migraine triggers, such as food triggers, effects of sleep, glasses prescription, screen brightness, overusing painkillers, teeth grinding and stress. When I first started getting migraines the information on food triggers was often dreadful. People either told you it was nonsense or suggested potentially harmful exclusion diets.

When I first started getting migraines the information on food triggers was often dreadful

Identifying and removing food triggers from my diet helped me and, opposed to what you would expect, actually took me from a low BMI of 15.4 to a much healthier BMI of 21 – 23. I miss chocolate and cheese but the thought of what happens after I eat them is enough to stop the temptation. Even a little bit is too much of a risk, so please stop pushing it at me!

Would this work for everyone? No, some people have no food triggers at all.

I’d recommend looking at the website of your national migraine association for more details and considering using the headache diary that many of them provide; these can help you identify your personal trigger(s) so that you can make the minimum of changes to your life for the maximum benefit.

What about preventing migraines with medicines? Have there been improvements?

I’m not sure that this has changed all that much in terms of what medication is used routinely but I’ve found doctors much more aware that there are things that can prevent migraines and they are more inclined to suggest daily prophylaxis. The majority of treatments still appear to be off label and not actually licenced for migraine prevention, so there can be stigma resulting from the standard uses of those medications, as many are also used for treating mental health issues. The biggest changes I’ve seen are:

  • Patients appear now to be warned about becoming pregnant while taking sodium valproate. This was not the case in the late 1990s despite it being prescribed for migraine prevention to women of childbearing age.
  • Botox – I’ve not personally met anyone who has had this but have heard that it is well worth trying if you have certain migraine triggers.
  • Calcitonin gene-related peptide (CGRP) inhibitors (monoclonal antibodies) are a new class of drug designed to treat migraine but do have limited availability in some countries.
  • There are a range of stimulation devices available, including for the trigeminal and vagus nerves.

What has changed about where you find information?

The migraine associations now have much better up-to-date information on their websites so it is much easier for patients to find reliable information. What has really changed for me is being able to read a news story about a “new cure for migraine” and at the same time being able to read the original research which is much more important for me. It makes it easier to judge whether people are just trying to sell you miracle cures.

Why did you want to share your perspective on migraine treatment and improvements?

I’ve seen a lot of changes over the years in the understanding of migraine by the general public, people with migraine and healthcare professionals; however I’ve also seen some amazing gaps in knowledge in all of those groups. I still feel helpless in the face of a bad migraine even now, although I have a biomedical research background and am able to understand a lot more of the treatment and prevention options for migraines. Having had migraines for the last 25 years, I can certainly speak about some of the changes!

Thanks very much for sharing your experiences and insights with us. This has been incredibly enlightening!