So many things are upsetting about migraine disease including the pain, stigma, and disability. I’ve started noticing how often I lose chunks of time when I’m struggling. It feels as though I’m walking down a dirt road, complete with bumps, holes, and smooth spots, but during a migraine attack I find myself stuck in the loam. The same holds true for when my daughter struggles. Everything stops, and migraine sucks us into the quicksand at the side of the road. Unable to move forward we stop toiling until it lets up and we can crawl out to recover.
Once on solid ground we realize how much we’ve missed. Time with family, school and work commitments, and daily chores are all lost in time. Catching up and making up are just out of reach, somewhere in the fog that follows us through this part of our lives. The road is unstable, exhausting, and painful but is our road to walk. We keep trudging forward, enjoying the smooth spots along the way, and hoping for a more peaceful road. We have no other choice.
There is DNA in the migraine story of my family. My mom called them “sick headaches,” and sometimes I’d find her on the couch when I came home from school. These were the only times I ever saw my mom lay down during the day, and even with a “sick headache” she’d get up and start dinner as soon as dad’s truck pulled in the driveway after work. She never showed him her pain – it was embarrassing and a sign of weakness – but I saw how she suffered.
Around the time I turned 13, the head pain and nausea I’d been experiencing throughout my childhood was finally referred to by my parents as “sick headaches.” The stigma of these “sick headaches” (migraine attacks) was also attached, and I knew they were something I had to hide from others. I hid them for decades until I couldn’t hide them anymore. Even with regular medical care and a slew of migraine medications, I lost my job of over 20 years, because of chronic migraine attacks and comorbid conditions.
I don’t know if it was the fog of my own struggle with chronic illnesses or the learned embarrassment and fear of appearing weak from my childhood “sick headache” experiences – but I failed to recognize the symptoms of migraine in my child. She often complained of stomach aches in elementary school and had been sick in the car several times. When she started middle school, the head pain started and eventually became a daily occurrence. It wasn’t until her pediatrician referred her to a neurologist that she was diagnosed with migraine.
Even with regular medical care and a slew of migraine medications, she is still experiencing daily migraine attacks. She has the typical comorbid conditions (anxiety and depression), which make the migraine attacks worse. Treating her anxiety and depression is, in turn, hampered by the migraine attacks. Also, the trauma she suffered as a younger child likely contributed to the attacks. She’s stuck in this cycle that is not her fault, and I’ve been unable to break her free.
All of this is in her DNA, passed on from her family going further back than I am even aware. It’s not just the genetic predisposition for migraine but the family history of trauma, also likely going back further than I know. It’s like a glitch in the DNA, turned on by chance at birth, and compounded by negative life experiences – a family glitch we no longer hide.
The migraine is over, and I’m ready to take on the day — or am I?
The first thing I notice, upon waking, is that the pain is gone, and I feel elated like the pain from yesterday has caused a rebirth in me! I move to get out of bed and sense the soreness that tightens and ripples through my body. I stand up, determined to ignore the aching, but my head reels and swirls causing me to steady myself for a minute. Then, adrenalin cascades through my veins as I contemplate the tasks ahead of me today.
Once dressed, I open the curtains and then immediately close them because the daylight feels too intense and is burning into the pupils of my eyes. A hat, dark sunglasses, and lots of squinting facilitate the morning drive to the kid’s school. Soon, I find myself sitting at my desk, staring at the computer screen and thinking, “What was it that I needed to do today?” I read the to-do list and decide to do it tomorrow and feel comforted by the fact that I actually made a decision..
I decide to write a post about migraine postdrome, also known as migraine hangover, in hopes that it may be helpful to others. For so many years, I was unaware of this final stage of a migraine attack and understanding it has helped me learn to cope better. The worst part of migraine postdrome for me used to be accompanying depression because when I realized that I was unable to perform at a “normal” level of activity after a migraine, I felt weak, lazy, and useless.
Now, I take a step back and remind myself that I can be productive as long as I modify my activity. Simple and mundane tasks are now on the to-do list for today so that when I am feeling better, I’ll have more time to focus on more ones. It is still a struggle for me to quiet the negative self-talk, but I’m very much a work in progress.
Migraine postdrome is real and can last for up to 2 days. With all the focus on treating the migraine attack, we must not lose sight of the final stage of migraine and how to recover in a way that works best for us.
So many things are passed on to our children including some of our most significant struggles. What a joy it is to see the positive aspects of family traits reflected in our children and what a devastating reality it is to see them struggle with pain. My youngest daughter has migraines. She got them from me. My mom and my maternal grandmother both had migraines, and I suspect this genetic condition goes back many generations more than any of us know.
Today, after missing another school day, my sweet daughter is in bed with her head on an ice pack and her room as dark as can be in the middle of the day. I know exactly how she feels, yet I am powerless to end her pain. It was just after she was born that my migraines became chronic and, ultimately, intractable. She knows what her future could hold, and it both scares her and makes her sad.
Another journey is at hand because we must find a way to control/prevent my daughter’s migraine attacks before they take over her life. I’m so sorry little one. It is part of who we are, but I won’t let it overtake you.
This picture symbolizes how I feel today and all of last week with a non-stop migraine. I’ve been out of order but still trying to function. Every task requires so much more effort. I make so many mistakes that take even more time to go back and correct. The pain has subsided – for now, but I am thoroughly exhausted.
My body feels heavy and weak. My brain feels like it is swimming in soggy oatmeal, and my thoughts are slow and shallow. When I talk, many words are forgotten, slurred, or mispronounced. I make no sense, and I recognize the look on my children’s faces. They are worried, scared, and try to help me, all the while warning me not to do too much. “We don’t want your migraines to get any worse,” they say.
Chronic migraine hurts, and it scares my children. The latest migraine attack is the first time in many months a migraine has lasted more than a day or two. I’m desperate for the end of this episode.
I say these things too often. “My head hurts,” is the most common saying for me, followed closely by “Can you close the blinds.” Other well-used sayings are, “What’s that smell?” and “Can’t someone else drive you?”
A series of flashcards with these sayings would come in handy on the days it hurts to speak. I could plaster them to the bedroom door and stay hidden in my silent, dark, and smell-free migraine cocoon.
Chronic migraine brought me to my knees, and I have no desire to return to that position. Some days I feel good and energetic, ready to take on the world, but my body has limits and forces me to adjust. Instead of pushing through it, I must slow down and rest, or the consequences will be severe and painful.
The slowing down is a dance, and I am still learning steps to a new way to face life because pushing through the pain, no matter what, was how I always confronted challenges in life. I’ve learned that there is no use in overexerting myself because it leaves me in bed with agonizing pain for days afterward. Conservation and the careful use of precious resources is a priority for this new phase of my life.