If there are two things I know, it’s technology and migraine disease. But my relationship with technology took on a whole new meaning when I became disabled by chronic migraine.
I lived in the San Francisco, California Bay Area through the two tech booms when I built websites in the 90s, programmed interactive educational toys, and went on to produce and design those toys and games. Eventually, I moved on to interactive installations. So, I know ‘tech’.
I also knew about assistive devices, but it took me many years after chronic migraine ended my career to turn to technology for help. Technology has helped me with migraine on an emotional, physical, and social level. I’ve never had such an integral relationship with technology as I do now.
The COVID-19 pandemic also showed us how much more accessible the world could be to people with chronic migraine and other disabilities when technology is involved.
The internet is a lifeline for me: a place to get human connections and ideas. I research the migraine-related suggestions I find online and ask my headache specialist about them. Thanks to technology and the internet, I have access to information that leads to access to treatments.
I learn something new every day I go online: medication ideas, nonpharmaceutical treatment ideas, and equally as important, I find connection, emotional support, and validation.
Chronic migraine can be terribly isolating. When sensory input can be uncomfortable to unbearable, many of us have to stay away from most social environments.
Migraine also faces so much global stigma that it is hard for people to understand what you’re going through. Thanks to places like Facebook groups and Instagram, I have access to thousands of people living with the same disease as me, people who understand.
My physical relationship with technology has changed a lot as well. I grew up with a mother who needed hearing aids, and later needed voice-to-text, so I knew about assistive devices. Still, it took years before I looked to tech to help my life with migraine disease.
Technology can actually help treat migraine symptoms or even prevent an attack. Neuromodulation devices can be used to stimulate nerves and modulate atypical neural pathway behavior. There are currently five devices on the market that act on different nerves.
I have tried two that don’t work for me, and one that I cannot live without. While most are costly and inaccessible for many, some devices allow returns and are worth looking into. Like all things migraine, you have to try it to know if it will work for you.
Technology can reduce migraine triggers or reduce sensory input that is painful. Noise-canceling headphones or earbuds reduce noise levels while still allowing you to hear. There is software you can use to filter migraine-aggravating light emitted from digital screens.
I always lower the brightness of my screens, too. Eyewear has made some technological advances. There are special coatings for glasses to block out painful light waves and are safe to wear indoors.
While technology helps me in so many ways, I also need help to use it. This is one of the many paradoxes of living with migraine disease, I call it the migraine dance!
Emails and social media can make us feel like we have to be online all the time. If you are like me and too much time on screens leads to another migraine attack, it is important to balance your screen time.
Something that has helped me on this journey is turning off or limiting notifications on my phone. With inspiration from the author Myisha T. Hill, I am practicing letting go of a sense of urgency. There are apps that can help you limit screen time by letting you know when you’ve been on an app too long.
Some apps, like Instagram, have this option built in. There is even software that blocks access to selected apps after a set amount of time. Now, I just need an app to help with self-discipline!
Ergonomics was never as important to me previously. My neck and spine have to be in just the right position when using screens, or I will get an attack. I use yoga blocks to put my feet at the right level and often have to lie down so my neck is fully supported. I also practice relaxed breathing and stretch my neck and shoulders before, during, and after computer time.
It’s important to use tech the way that works for you in each moment. Another issue with using screens can be vision and hearing loss, strain, or pain. A lot of times, my eyes hurt, or I can’t see because of migraine, or sounds are painful, or I have to strain to hear.
You never know what you’re going to find online, sound levels and clarity vary a lot. Thankfully, there is technology to help with that, too. Screen readers, voice-activated software, and voice-to-text software can help if you’re having trouble with vision or your eyes need a break.
The software I’ve tried so far doesn’t work with everything. There can be a steep learning curve, too. I’ve been frustrated and am still trying to find the best software to use.
Captions make video content more accessible to people in all kinds of circumstances and are great if you’re having trouble with hearing or if sounds are painful. I keep the sound off on my phone and computer and use captions when watching TV. I hope more people will provide captions with their content, and some apps do offer auto-captions.
A silver lining of this terrible pandemic has been the newfound access to the world, from doctor appointments to music concerts. My world opened for a brief moment in time when lockdowns surrounding the COVID-19 pandemic began, and virtual options were expanded. For the first time in 7 years, I could take a dance class from my former teacher.
I was able to take the class in my bedroom where I could control the noise, smells, and sound levels, and lay down when I needed to. I could go to galleries and see an art show without risking being incredibly sick. One gallery I used to go to had a 3D walkthrough of their shows, and it was fantastic.
Obviously, nothing beats experiencing these things in person, but when it’s too much for your brain disorder, you’ll take the next best thing. Musicians were broadcasting shows, it was exciting. Remote doctor appointments became more common.
Thankfully, telehealth has persisted, and I am able to go to a headache clinic that used to be too far away. The ability to work from home is another huge leap into the world becoming more accessible.
The potential is there for the world to be more accessible. It requires spending money and energy on what might seem like a smaller portion of the population, but we all need more tools to engage with the world as we age. We need more people speaking up for better access for themselves or their loved ones.
Technology plays a huge role in my migraine life, and I am grateful to be living in this time. After 9 years of no reduction in my chronic migraine attacks, I am hopeful for the future of new assistive devices and increased accessibility for people with migraine and other disabilities.
Yuri Cárdenas lives in Oakland, California, with their assistance dog Katsu. They have been disabled for nine years and are passionate about reducing stigma and helping people live a better life while chronically ill. They advocate to end disparities in healthcare and see a safe space for everyone with Migraine. Yuri loves nature, being silly, and helping people on their antiracism journey.
Instagram: @MigraineTalk