The Challenges of Getting Better & Tips for Adjusting to the New Normal

With new therapies available for people with migraine disease, more patients are experiencing relief they never thought would be possible. Some who had poor results from multiple treatment options are suddenly “super-responders,” people who get 75%-100% improvement in the frequency and severity of their attacks. 

That’s a great problem to have, but as one of these super-responders, I can tell you it’s…complicated. Talking with other super-responders, I discovered that I wasn’t the only one surprised that getting better brings a whole new set of challenges. 

What are the challenges of getting better? Everyone’s journey is different, but here are a few that come up often in my conversations with other super-responders.

Learning your new limits

Every super-responder I’ve ever talked to has experienced some version of this. When you have a breakthrough in treatment, you can do things migraine disease kept you from doing. Go to the shopping mall! Take that long hike! Go out dancing! You do everything right away, get exhausted, and may wind up with an attack. Does that mean your treatments are failing? 

No. It means you’re learning your new limits. 

Migraine demands that you develop an expert instinct for signs that you’re approaching your limits and at risk of an attack or worsening symptoms. Is the room too loud or bright? How close are those strong smells? How’s the weather? You probably danced around triggers with an expertise that Fred Astaire and Ginger Rogers would envy.

Now you’re learning all new dance steps in a new body that responds differently. Your limits for things that used to trigger attacks are different; some are higher, some might even be gone. You may get hit with an attack you didn’t feel coming on because you’re not used to reading the new and less noticeable limits and warning signs. Even though your trigger thresholds are higher and symptoms may be less common, you might not yet have the physical or neurological stamina to do all the things you want to. (Don’t worry; Fred and Ginger stubbed their toes and got tired learning new routines, too.)

Try increasing your exposure and activity slowly. If you crave a day at the shopping mall, plan for two hours the first time out and keep the following day low-key. You’ll start to develop a feel for your new limits and the signs that say “go,” “stop,” or “slow down.” Keep your migraine records as always and be patient with yourself as you learn your new limits. 

On the other hand, maybe you’re reluctant to push those limits even though you feel better. You know the high price of exceeding your limits. Learning your new limits feels like testing the ice on the pond to see if it’s solid enough to walk on—you don’t want to put your weight on the ice until you know it’s solid. The advice for managing the urge to rush ahead works here, too. Go slowly, take small steps, keep records, and be patient with yourself. Eventually, you’ll learn what the boundaries of your “new normal” feel like and how to live your best life within them. 

Cleaning up after the storm

Migraine disease hits your life like a hurricane. You’re relieved when it passes, but then there’s a huge mess to deal with. Housework, home repair, finances, work and school, social relationships, even other medical issues might need attention and you’re overwhelmed. What do you do?

First, don’t beat yourself up about the “storm damage.” You did the best you could with all those things and more while fighting a painful, disabling disease. 

Then consider a triage approach on your to-do list. Which items on your to-do list are the most urgent or have the worst consequences if they’re delayed any further? Take on one or two of those most urgent tasks first. You’ll feel better when they’re under control.

Next, think about the other to-do items. Some might be one-and-done, like cleaning the garage. Others might be ongoing, like taking classes for work or preparing a week’s worth of meals each weekend. If you forgot how to plan your activities according to anything other than how much pain am I in right now?, consider how you usually function best before you dive in.

• What to-do items will free up more time and energy quickly? 
• What items do I need to start now for long-term payoff? (Migraine disease costs us lots of opportunities. Can you make up some now?)
• How many things can I handle at once?
• How do I function best? Taking the classes first and worrying about cooking habits might work best for you. Maybe you can’t concentrate on classes or other long-term goals when you don’t have your daily routine down cold.

Caveat: Your post-storm cleanup looks different from someone else’s. Someone with supportive family/friends or more economic support might not have as much storm damage repair as someone with little practical support. 

Survivor guilt

Some super-responders may feel guilty about living new, improved lives while others with migraine continue to struggle. The term survivor guilt describes the conflicting emotions and reactions people have after surviving catastrophes like war or natural disasters, but perhaps it fits here, too. You can’t control your genetic makeup or your biological response to a given treatment. But using your good fortune to help others can ease the guilt.

If you have friends nearby with migraine, can you help them with errands or household tasks? Do you participate in advocacy events or use social media regularly to educate others about migraine disease? Are there trials or studies that you qualify for that may help researchers learn more about migraine and how to treat it? You can also try things like tutoring in a youth center or participating in neighborhood clean-ups or some other local volunteer activity you couldn’t commit to when migraine played a bigger role in your life. 

Reassessing your life

As you get better, you may realize that you’re not the same person you were before migraine ate so much of your life (if you had a “before,” that is, since some people develop migraine disease early in childhood). Maybe you have a deeper appreciation for the good things in your life or discovered new talents or hobbies. 

But you may discover uncomfortable things, too. Perhaps people thought you were faking or exaggerating your disability and see your new treatment results as proof that you weren’t that sick. People who dropped out of your life might expect to come back as if nothing happened. Even relationships with people who cared for you at your sickest can face rocky transitions. You might be disillusioned with your old academic path, career, or community.

Big life changes, even good ones like getting big relief from migraine disease, often make people reassess every aspect of their lives. If this describes you, you’re not alone. Your feelings may change several times before you feel comfortable in your life reboot, so take your time. Hit the pause button on anything that doesn’t require immediate action. Try keeping a secure journal or talking to someone who’s been there to navigate the changes.

Some situations and relationships might shift by themselves to a new “normal” that works for you. Others might need more work and you’ll have to decide whether they’re worth the effort or not. Only you will know what you can live with and what you can’t. 

Millions of people with migraine disease dream of the day when treatments work well and give them a more “normal” life free of pain and disability. Getting better comes with some challenges, but if you recognize those challenges as normal parts of the process, you’ll get through them more easily and get more of the life you truly want.

MEET THE AUTHOR

Lisa had migraine attacks for most of her adult life before being diagnosed with migraine disease. A communications strategist, writer, and former radio announcer, she lives in the Boston area, where she advocates for her fellow migraine patients every chance she gets.