Migraine. It is a word often synonymously associated with headaches - but worse. However, this framing can lead to widespread dismissal of a condition that, for many individuals, causes chronic pain that can be debilitating across many aspects of their life.
Jenni Mandelblatt, my aunt and dinner buddy for tonight, describes her chronic migraines not only as causing intense head pain, but causing pain in her eyes, stomach, and overall body. For her, a migraine can last as long as four to five days at a time.
Her first migraine came with her first period, but did not reappear with frequency until around the time she left for college. When she got to a point where Advil or Tylenol would no longer do the job, she went to see a neurologist and go on medication for the first time. However, this was prior to the existence of any migraine-specific medications.
Mandelblatt describes how, at one doctor’s visit, “there were 40 or 50 names of medications and I checked off almost every single one of them. So I tried everything.”
She went on to add, “some made me feel like I had been hit by a bus. Some made me feel like my limbs were so heavy I couldn't walk… it was wild.”
For her two years in college, migraines interfered with studying and social life. In her following years working at Cheesecake Factory, she had accommodating and flexible hours that were much more easily adaptable to her needs.
However, everything got more difficult when she started working a nine to five job. Thankfully, once migraines became officially recognized as a disability under the Fair Employment Act, her doctor was able to write her a Family and Medical Leave (FMLA) form, qualifying her for protected, unpaid leave when needed.
During this time, Jenni would have migraines to the point of throwing up, and her medications were not working as well as they were supposed to.
She emphasizes that, “it was just everything. I couldn't look at a computer screen. So how could I drive? I could hardly drive. So how could I look at a computer screen? How was I gonna get to and from work? It also affected my social life. I went home and didn't want to do anything because I was so afraid of anything triggering it...
"Something I ate, something I drank, something I did, something I didn't do. So I did nothing. I became a hermit.”
At its worst, her migraines were so predictable that they would come on the same day of the month, every month, for two years straight before the schedule deviated. They would occur at three in the morning on the ninth of every month, waking her up mid-sleep.
Clearly, finding the right medication was a path filled with struggle. What works for one might not work for the next, and there is so much trial and error in the process.
However, Mandelblatt said, at some point you meet a doctor that you click with, and hope she never retires. She found someone willing to work through every medication with her until finding the right one which she says gives her a “large amount of normal days,” which she is grateful for.
However, she is 47 years old, and had her first migraine at 13. It has taken her around 30 years to find a medication that works as well for her as the one she is currently on. Even still, this medication does not stop her from getting migraines entirely, but rather lessens the number of episodes that she has overall.
Jenni described how her migraines would wake her up from a dead sleep at three in the morning and she previously would try to delay medication in case it got better. Now, she knows the drill. She immediately rushes to the bathroom and takes her rescue medication. She then lowers her AC to 65 degrees, helping to constrict blood flow to the brain. She tries to relax and breathe, because she knows any frustration or tears will only make it worse. She adjusts her morning alarm, giving herself space to call in late to work.
Most of the time, she knows she still has to try her best to get herself up and moving after using her rescue meds because, as she puts it, “I can't give in all the time.”
Mandelblatt added that many are unaware of how lonely of a condition chronic migraines become. There is so much to be missed out on -- birthdays, gatherings, family hangouts. She might have to cancel plans last minute, or leave early from something where she feels there might be a migraine trigger present. In the middle of an episode, all she wants to do is be in the dark, in the silence.
In all of this, her biggest support was her step-father and my late-grandfather, Ken Ziskin. She described how he would go to migraine seminars with her, and on his own time learn breathing exercises and holistic medicine techniques that he would walk her through over the phone. He would always end each call with, “I love you.”
Other friends and family would show support through sending her food on bad days or texting her when they knew she would likely be mid-migraine episode, just to remind her that they care.
In 2013, one migraine changed everything. Jenni was mid-episode, but strongly felt that this migraine was significantly worse than usual.
Her mom initially questioned her, saying, “but you've had these before. You'll get through it.” She had to have the courage to stand her ground and say, “no, this one is worse.”
She went to the emergency room and was diagnosed with a brain hemorrhage. She sought care just in time to be treated, and emphasizes how this experience taught her the importance of self advocacy.
Mandelblatt believes speaking up in a time of crisis is a critical moment that allows patients to truly find their voice.
It empowers them to be more aggressive in discussions with doctors and in seeking out medication and care.
In her parting words, Jenni expressed how she is a strong advocate for medicine. She voiced her perspective that:
“...if there's a medicine out there that could try and help you, make you feel better, just try it. Especially for chronic migraine sufferers or people with chronic illness: take the medicine. Find a doctor willing to go through that list with you. Figure out what works for your body, and then don't skip a minute. Don't skip a dose.”