Adam - Men with Migraine

Name: Adam

Location: Tauranga

“I often feel guilty despite knowing that I am not causing this or doing it intentionally, the hardest part is accepting that this is something that is happening to me and by extension my family. I am trying to look for answers and improvement as much as I can. I will occasionally get beaten down and think I have run out of options however the support of my family helps to bring me out of that kind of thinking.”

Migraine Journey:

I have had them ever since I was little, but as I grew older they became more frequent and intense. I have never had an aura , however I can sense them coming and one or two close friends and family can also sense within about a day that it is developing. For me they are usually in or above my eye on either side. 

If I am able to sleep it off the whole process takes about 2 days with the pain usually staying with me for 24 hours, I will gradually become less coherent, I lose balance, my vocabulary shrinks and recalling a memory or solving a problem is almost impossible, even things that seem simple or trivial become impossible. Anything that increases my heart rate is immediately transferred into my skull and motion itself is unbearable.

I am now in my 40’s and in a bad month I can have 20+ migraine days. I'm lucky if I go 4 days without one. Over the years I have exhausted the list of treatments, cures & alternatives. I've lost hope and given up only to hear about a new or unique treatment which raises my hopes yet often leads me back to the same place.

I have tried most preventatives over the years, many had no noticeable effect, some were unable to be tolerated at the dosage suggested and had to be stopped. Topamax & Amitriptyline were the worst (for me anyway)

I am about to begin a trial of Eranumab which is available in NZ although not funded yet. Hopefully it is able to reduce my bad days, but if not I will move onto the next thing.

I have tried botox which worked once but didn't seem to make any difference the next time, acupuncture also made no detectable difference, i have tried various neck & spine manipulation techniques all claiming to cure 90 something percent, and while they do increase mobility and help me to relax there was no impact on migraines.

I currently rely on Sumatriptan injections or dispersible tabs to get through the day, the unfortunate problem is for me they cause rebound headaches and I get trapped in a cycle of overuse. I occasionally have to withdraw from them by taking steroids which helps break the cycle. And I get back to having a few a week which slowly builds back up. 

I have never been able to identify any triggers, but my understanding is for the people who do, they are better able to manage or minimise their migraine days. I have tried elimination diets, food chemicals like salicylates, amines etc, gluten and so on yet despite avoiding these things for months, there was never any detectable difference. 

I am no longer able to work, I was an IT Manager for many years and had a job and workplace that I loved, but as my migraine became more frequent and harder to manage it impacted my work to the point I was no longer reliable and often if I was present at work it was due to having such a high dose of triptan to get me there yet I was not mentally present or capable of detailed technical work or social interaction so 2 years ago I left work.

I often feel guilty despite knowing that I am not causing this or doing it intentionally, the hardest part is accepting that this is something that is happening to me and by extension my family, I am trying to look for answers and improvement as much as I can I will occasionally get beaten down and think I have run out of options however the support of my family helps to bring me out of that kind of thinking. It has affected my wife and kids in a huge way, we no longer have my income, my wife now works full time, my kids often have to miss out on weekend and even weekday activities because I may be incapable of anything other than collecting them from school. We have relocated a number of times because of the financial impact of me deciding to leave work, this also means my kids have changed schools more than once.it is hard not to pile on the guilt as it is because of me but not intentionally. I do get to spend a lot of time with my kids now which I always wanted as I used to work long hours, I am able to join in all their activities that I used to miss. We have found a balance that works for us although I do have a lot of bad days each week. I am still able to participate in so much more with my family than I was able to when I worked. It also gives me more time to work on my health, attend appointments and listen to my body.

What advice would you give to other males out there?

Be kind to yourself,  don’t blame yourself, if there is something you can do then do it. Having a migraine is hard enough, you don't need to pile on extra pressure or guilt. Your family will understand, and when you’re feeling better you can be present and enjoy the moment.