My experience with chronic migraine has been tumultuous, to say the least. There have been so many ups and downs that I can barely keep track of them all. For the past 12 years I have been actively and proactively doing everything I possibly can do to relieve my pain: different treatments, lifestyle modifications, devices — you name it, I tried it. While I’ve experienced brief moments of success with some of those methods, unfortunately, nothing has ever worked in the long-term.
The worst is when my migraine becomes intractable. Intractable migraine, also known as status migraine or status migrainosus, is when a migraine attack lasts longer than 72 hours and does not respond to usual therapies. Intractable migraine attacks can last from a couple of days to several months or even longer.
I am currently in the middle of a five-month-long intractable migraine.
That means daily, unrelenting pain ranging between a 4 and a 10 on the pain scale. In addition to migraine, I’m also experiencing a pretty terrible occipital neuralgia flare-up. It feels like there are little men sawing away at my nerves and muscles on the back of my head and the area behind my ears.
Being in constant pain for this long makes me feel like I am going crazy. Accomplishing daily tasks and completing assignments for work become laborious if not impossible. I spend most days in bed or on the couch just trying to relax and ride out the pain. I can’t concentrate or really even focus on what’s happening around me, and sleep provides no relief.
How do I cope? It’s sort of cliché to say, but I just do what I have to because no one else is going to do it for me. I don’t have any extended family nearby; it’s just me, my husband, and my three children. Thankfully, my kids are all older now, so they can do way more around the house when I can’t. Still, it would have been nice to be able to call on my parents or sisters to come over and pitch in when I’m in the throes of migraine.
Running a household with migraine
Since I never really know how each day is going to go and don’t want to risk exacerbating my pain, I have to set limits on how much and what types of activities I can do in order to conserve energy. I also have weekly limits as to how much pain medication I can take, so I have to choose wisely about which day’s attack warrants them. On days when I can’t take medication, I use other coping and management skills to try and keep the pain at a minimum.
Meanwhile, life continues on around me. My children still need to be parented, the dogs need to be cared for, the housework doesn’t stop piling up, and everyone needs to be fed. Finding ways to tackle the day’s tasks while managing my pain is tricky. I may feel motivated to get stuff done, but my body won’t always allow me to do them.
In these situations, I pace myself, taking it slow, delegating different chores and learning to listen to my body when it needs to rest and recover. Is my house as clean as I would like it to be? No, but it’s not horribly messy and getting my kids to knock out a few chores or toss in a load of laundry helps keep things tidy enough.
I may not go to the store or cook as often as usual while in an intractable state, but thank goodness for food delivery services. Being able to either order takeout or groceries really helps me out when I’m down for a few days.
Dealing with guilt
Although I have tools and support to help to ease the burden of housework, it’s hard to get past the guilt that I feel over not being able to function at the level I would like to. Along the course of my journey with migraine I realized that it’s important for me to find healthy ways to cope with these feelings. Otherwise, I could get swallowed up by them pretty quickly. Meditation, reading, and journaling all help me to focus on more positive thinking.
Finding distractions from the pain
The hardest times are when I am confined to my bed or the couch for days at a time. Staying positive becomes increasingly difficult as each day progresses without any change in pain — I wake up in pain, go to bed in pain, and even wrestle with it while I try to sleep. It’s maddening. The worst part of all is that there’s no way to know when this cycle of pain will end.
Distraction is the name of the game during these episodes. Watching television shows and movies, doing crossword puzzles, and playing puzzles or other quiet games always helps to keep my mind off of how much pain I am in. Sometimes, I will ask one of my kids to come and lie with me for a few minutes. The comfort of having them near me lessens my pain and anxiety.
Chronic intractable migraine is hard to live with. There is no real end in sight and it’s extremely tricky to treat. Finding the right combination of medications, coping techniques, and management skills can take a while to get right. Sometimes, those methods may even exacerbate or cause more pain.
For now, all I can continue to do is be kind to myself, rest, and try to let go of some responsibilities so that I can focus on getting well again. Until that time comes, I will keep using my tools, leaning on my family for support, and reminding myself that pain does end. I have weathered the storm before and I will do it again.
For more information on how to manage migraine, reach out to your doctor or healthcare team.
MIG-US-NP-00133 MAY 2019