My story and help for you on International Migraine Day

Today is International Migraine Day. The day on which we reflect on the impact of this invisible but all-defining brain disease for many. (Chronic) migraine is much more than 'a little headache'. It is a complex condition that limits the daily lives of millions of people worldwide. Unfortunately, I (Mariko) know, so here is my personal story -in short. Not to be pitiful, because I don't like that, but if my story helps just one person, that's already a win.

Since puberty I myself have had migraines and over the last 15 years it has become chronic. This means that without preventive medication I have 12 to 15 severe migraine attacks per month. Literally everything has been reviewed to temper the migraine, but all medicines did not work completely or stopped working after a while. At the moment I fluctuate around 6 to 8 attacks per month.

Also read 👉 Migraine: more than just a headache

Cold turkey and rock bottom

I tried all preventative medicine options, a very strict ketogenic diet (which worked well for a while!), hormone therapy and not to mention the mountain of triptans I took in my life. After 10 years I felt like a junkie. And in 2019 the neurologist at the time said so in not so many words. I had to go through three months of withdrawal from all medication. Cold turkey from one day to nothing, not even coffee or paracetamol. Support: nothing, zilch, nada. I can still cry when I think about it, and I don't cry that easily.

Long story short: the worst attacks in one go, it was impossible, but I did it anyway and something broke inside me. I think that was because the hospital left me to my own devices. I was given a phone number for a nurse that I could call 'day and night', but she never answered. It was really about nothing, it couldn't get any worse. That gave me the final push to participate in the keto migraine study at the beginning of 2020 and that diet worked out great. My migraine attacks decreased quickly.

Every few months I had a video chat with the neurologist. After about nine months of keto we ended the sessions, because I was no longer a patient. I never got a real answer to my question about how it was that nutrition helped me now and not the medication. Not because she didn't want that I think, but because there is (still) no scientific answer.

The migraine is back

Unfortunately, after almost 2 years, the migraine returned just as hard. I have been under treatment at The Migraine Clinic for 1.5 years now. There I tried a CGRP inhibitor and botox, but unfortunately that did not help either. So the migraine is still there, but at The Migraine Clinic I am heard and well guided, which makes it more bearable. Due to the right guidance and adjustment of medication, the attacks are currently less severe and present. That gives peace.

Take the Migraine Test 👉 How do you know if you suffer from migraines?

Cause unknown

Unfortunately, the cause of migraine is not yet known. What is known is that women suffer from it three times more often than men. This is probably due to sex hormones.

So we still know very little about migraine and that is because the medical world has always used male test subjects for scientific research. Only recently has there been real attention for diseases in women. And that has partly ensured that there are still few good medicines for migraine. For this reason, migraine patients are often prescribed medicines that are actually intended for other diseases, such as beta blockers and anti-epileptics.

Migraine help

Fortunately, everything is developing quite a bit now. If you want to keep up with that development, I advise you to become a member of Hoofdpijnnet, which has always helped me a lot. Below you will find more information about that, as well as about The Migraine Clinic, where I am being treated with satisfaction. Always go to your GP with migraines. If you would like to know more, you can always email me.

The Migraine Clinic

The Migraine Clinic is a specialized clinic that focuses on personalized care for people with migraine. They offer evidence-based treatments, tailored to the unique needs of each patient. The team consists of specialized neurologists who offer both preventive and acute treatments, such as medication and CGRP inhibitors. With short waiting times and care that is covered by all health insurances, the clinic helps patients quickly move towards a life with fewer migraines. For more information, you can visit their website: The Migraine Clinic .

Headache net

Hoofdpijnnet is an association that supports people with various types of headaches, including migraine. They offer information, advice and peer support, so that patients can share experiences and find support. The association organizes meetings, webinars and activities for members, and offers access to a members portal with exclusive information. Hoofdpijnnet also promotes more research and awareness around headache disorders. For more information and to become a member, you can visit their website: Hoofdpijnnet .