Tracking My Pain
Imagine your daily life like a faucet of running water. You have a flow of information coming into your mind: traffic lights, the smell of the barbecue place across the street, or the sound of a whirring dishwasher. You can only process these inputs as fast as your mind can handle, and it comes at you all day long. Your brain makes decisions based on the information you receive, past experiences with that information, and any other risk-assessments built into your consciousness.
Now, imagine the flow being turned up like a firehose. The smell of perfume from the previous person in the elevator courses through your body and sends pain running down your spine, causing your stomach to lurch. Fluorescent lights in the office make your eyes feel like they are melting into the back of your head. The caring touch of your loved one while asking in a normal volume, “are you okay?” feels like hundreds of static shocks on your skin sending you reeling to regain your center. You can literally feel your environment, and every sensor in your body is feeding back excruciating pain.
This is a migraine attack.
Little is known about the causes and biological patterns behind migraine
My parents tell me that when I was about 5 years old they rushed their screaming daughter — clutching her head — to the ER. They were thinking the worst, only to find out it was a migraine attack at a very young age. Unfortunately, there was little they could do other than to see a neurologist and administer children’s Tylenol. From a young age I became educated on living with the 6th most disabling illness in the world.
There is very little known about the causes and biological patterns behind migraine. Right now, there are only theories — ranging from issues in the central nervous system to abnormalities in brain chemicals — none of which has resulted in any kind of cure. That is, aside from the countless “cures” from speciality chiropractors, herbalists, and acupuncturists where I’ve unsuccessfully invested resources.
“Why not?” — the solutions that come from data analysis
Recently while attending a TED@IBM event in San Francisco I felt empowered to hear from so many intelligent minds facing some of the most daunting challenges in the world — teen suicide, humanitarian crises, climate change — who, instead of feeling overwhelmed with fear of failure, asked themselves “why not?” and began crafting solutions.
One of the speakers, Eleftheria Pissadaki, PhD, a computational neuroscientist who now deploys her skills in IBM Research Yorktown Neurobiology department, spoke about her journey in studying people living with Parkinson’s Disease and examining why neurons die, especially those with higher dopamine levels. She used a data set from patients to study personalized medicine and the possibility of turning off neurons when they get tired so they don’t die, thus preventing the symptoms or possibly even the progression of Parkinson’s Disease.
Tapiwa Chiwewe, PhD, a research scientist at IBM and an environmental problem solver, was frustrated by oppressive pollution while driving to work in South Africa. So he created an AI-enabled program using a combination of forecast data and data from ground sources to create an air-quality forecasting program. The forecasting program gave citizens information on where to live and how to get around, and enabled Chiwewe to partner with city development officials to make positive changes in the ever-growing urban sprawl. Instead of sitting in his car on his way to work breathing in the smog-dense air, Chiwewe, who initially felt helpless against such an immense challenge that seemed unrelated to his engineering background, decided to take action.
Data is the backbone for making decisions — and its importance keeps growing
All of the speakers had something thing in common: they used data and technology as the foundation for their solutions. It’s no surprise that as we use data as the backbone for making decisions and creating solutions, both the importance and volume of the data will grow exponentially.
In Chiwewe’s case, where on-the-ground data collection is vital for real-time AI processing, Edge computing is becoming a larger and more critical part of the technology ecosystem. That’s especially important in humanitarian or health care solutions where critical data is needed on the ground much faster than traditional cloud infrastructures can provide it.
In my case, part of living with migraine is equipping myself with the data I need to make decisions. I use an app to track the frequency and severity of my migraines, in combination with a food journal and weather app so I am informed about what foods or environmental changes may trigger a migraine. Through what feels like endless experimentation and analyzing lots of raw data in Excel sheets, I’ve found that too much sun, dry heat, pollution, alcohol, several types of nuts, hotel air circulation, floral scents, blue lights, less than 6.5 hours of sleep, high-pitched sounds, too much processed food, dehydration, and secondhand cigarette smoke are a few of the things I have to navigate if I don’t want to be rewarded with a complimentary ticket to “migraine town,” as I like to call it.
Health records, real-time biofeedback, and environmental data
For example, I’m currently participating in a clinical study which requires me to wear an activity tracker. In the future, I might wear an activity tracker or other wearable devices that use AI to combine data from my health records, real-time biofeedback, and environmental data to send me proactive alerts — for example, to alert me that a severe heat wave is approaching, or to advise me that due to various other factors or warning signs, I should pass on the bread basket at my upcoming work dinner.
In the future, in addition to having AI-enabled programs that can process much of the “kitchen faucet” of information for me while I sleep, I hope to have the opportunity in my lifetime to take advantage of personalized medicine that utilizes my unique chemistry to deliver a precisely tuned amount of Imatrex, so I don’t feel like a hungover college student the next day.
All my aspirations for living a migraine-free life will depend on the availability and reliability of data in the healthcare ecosystem. The solution is out there and ready to be found — it just needs the right person to say, “why not?”