5 Priceless Lessons Learned From My Migraine Brain
Seeing life lessons through the lens of pain
If you’ve experienced a migraine headache at any point in your life, you know the indescribable pain. The hyper-sensitivities, being off-balance, the constant pain, nausea and vomiting, and sometimes just wanting to die.
Trying to shut out the world during a migraine attack sometimes works, and sometimes it doesn’t. Sometimes I could crawl into a dark space and exclude myself from the world. Sometimes I had to suck it up and go to work or school (or both).
The world is really not kind to people with a migraine brain. Simply because a majority of the population sees it as “just another headache”. Most people don’t understand migraine. From someone who has experienced migraine attacks (and other types of headaches) since the age of seven, they’re not “just another headache.”
Headache fact: there are seven different types of headaches — migraines, cluster, cervicogenic, stress/tension, sinus, occipital neuralgia, and trigeminal neuralgia.
I’ve experienced six of the seven throughout my life, with migraine being front and center.
Migraines (and headaches in general) are unique to the person experiencing them… meaning that no one feels precisely the same things like the next migraineur. There may be commonalities, but nothing is exactly the same. How I experience migraines may not be how someone else experiences them.
For example, everyone generally associates auras with migraine attacks. I never had auras (visual disturbances that act as ‘warning’ signs of an impending migraine). Years ago, when I told another fellow migraine sufferer that I didn’t get auras, she abruptly said to me that I wasn’t experiencing migraines. Since she experienced auras, she wrongly concluded that everyone gets auras with “true migraines”. And that’s simply not true at all.
Because people generally feel something different from their migraine attacks, it’s also difficult to care for the migraine patient. One has to find what works best for them to not only get the attacks under control, but to try and stop them before they morph out of control.
Unfortunately, the current healthcare model and delivery system in the United States is not individualized. It’s a cookie-cutter system; What works for one should (in theory) work for the next person. It’s a broken and archaic way of treating people and diseases. Yet we’ve managed to slap a bandaid on the broken parts and just keep going.
Perhaps someday it’ll change. One can only hope.
This article will discuss the five valuable life lessons I learned on my migraine journey. Believe it or not, we can learn many things from our diseases and afflictions. What we can learn is just the tip of the proverbial iceberg.
But first, reframing the past
In the throes of an attack, I certainly never said, “thank God for this migraine!” I was miserable, prayed for death, kept myself in a pitch-black room, and hugged a toilet most of the time.
I was beyond miserable, and I was equally as miserable to the people around me. After all, misery loves company. I was moody, irritable, hypersensitive, and even inconsolable occasionally.
My pivotal moment came in November 2019 when I grew weary and tired of feeling another migraine. In one recovery phase, my husband and I watched a random documentary on Netflix.
After watching the documentary, which is where I first learned about the ketogenic diet, I remember turning to him and saying, “Why not? I’ve literally tried everything else, and nothing’s worked. What do I have to lose at this point?”
So down the keto rabbit hole I ventured. And to my amazement, it worked.
I recently celebrated my 1-year migraine-free anniversary. As of this writing, the last migraine I experienced was on March 20, 2021. I want to keep it that way.
Before March 20, 2021, I went 330 days (almost one year) migraine-free. But it was a horrible PMS craving for a cupcake that brought it all crashing down. I suffered a terrible migraine by eating something with refined sugars, something I knew not to eat. The unfortunate part was that it wasn’t even a good cupcake. It was a classic lose-lose scenario.
I explain that to tell you this: recently, I was able to take part in the Migraine World Summit. It was nine days of learning from experts about headaches and migraines. While it was virtual, and a good opportunity to keep learning.
One thing that stuck out to me was a gentleman talking about what he learned from his migraines. The way he reframed his migraine experience was intriguing to me. He put them in a positive light and not a negative one.
I initially thought to myself, “What a nut! There’s nothing positive about a migraine.”
Yet there is.
So down the reflection rabbit hole I went.
I started to reflect on my migraine journey. And when I think about it, I can now see the lessons I’ve learned along the way—and, going deeper, what I’ve learned about life through having a migraine brain. It’s both been a curse and a blessing.
I’ve begun reframing my past experiences with migraines. It’s led to some remarkable things I’ve learned about myself that I never previously considered.
If you’ve been afflicted with migraines or even some other disease process, perhaps you can reflect to see all the things you’ve learned. You might be amazed to see ‘dis-ease’ in a different light.
Here’s what I learned:
1. Resiliency
According to Dictionary.com, the definition of resilient includes:
- springing back, rebounding
- returning to the original form or position after being bent, compressed, or stretched
- recovering readily from illness, depression, adversity, or the like; buoyant.
Not everyone is resilient. I never thought I was. But then I reflected on all I’ve been through and experienced and realized I have some resiliency to my spirit.
I can say that I bounced back, recovered, and didn’t give up. I didn’t accept the status quo, and I certainly didn’t take every medical opinion and option presented to me (and there were some crazy ones too).
I fired my last neurologist because he didn’t listen to me. He didn’t want to listen to me. He tried to keep me medicated, and I didn’t want that. I wanted a cure, something he couldn’t and didn’t provide.
The lesson here: don’t keep a healthcare provider in your life that doesn’t hear you, and doesn’t want to work toward your goals. There are other providers out there. Be selective and find the one that works best for your needs, not their gains. This is also part of being resilient… standing up for yourself.
When faced with a disease or life-altering event, some people pack up and live in that condition or experience. They don’t bounce back. They don’t fight back. They accept things as they are.
Even in the throes of a migraine attack, I always thought, "there has to be something better. There has to be a cure. I can’t live like this.”
Unfortunately, for most of my life, I accepted the hand I was dealt but secretly wanted a different outcome. I eventually learned that I didn’t have to agree with what my doctors told me. They didn’t know ME. They knew about the disease, but not me as a unique person.
In today’s healthcare climate, you have to practice being resilient. You have to be your own cheerleader, advocate, and voice. Otherwise, you’ll get swallowed up and spit out by the same healthcare delivery system that says you don’t follow their rules.
Having the ability to be resilient despite debilitating headaches taught me there are better options. I have the power to create the change I need, and I deserve to live a better quality of life.
So do you.
2. Perseverance
To persevere means carrying forward, to keep going despite the difficulty, obstacles, or discouragement (thank you again, dictionary.com).
Perseverance and resiliency work together. If you can bounce back, you can continue to move forward and keep going despite the odds that may be against you.
I remember when I started my keto journey. My mom thought she was helping me by giving me a suggestion. One evening, she remarked, “they’re coming out with a new medication to treat migraines. Why don’t you consider that, so you can still eat whatever you want?”
Thanks, mom. But no thanks.
While I appreciated my mom’s concerns and willingness to help me (as she always has), I didn’t want to take any more medications. I wanted to be done entirely with medicines.
Perseverance is hard work. Most of the time, you’re so involved and focused on your work and efforts that you don’t take notice of the strides made along the way.
I think the best way to describe perseverance is a quote I found by Newt Gingrich. He said:
“Perseverance is the hard work you do, after the hard work you just did.”
At times, continuing to find something that worked best for me for the goal I wanted was daunting. And sometimes I wanted to just give up. But that wasn’t an option. I wanted a permanent end to my migraines.
And through relentless perseverance, I found what worked best for me.
You can do the same.
Today, after the initial hard work of finding what worked best for me to become migraine-free, the next phase of hard work is underway… remaining migraine-free. That’s just as much hard work, especially since my methodologies tend to go against the grain.
3. Empathy
Empathy is not the same as sympathy. Empathy is not feeling sorry or sadness for someone but saying, “I’ve been where you are and understand.”
Researcher and author, Dr. Brenee Brown, says it best about empathy:
“Empathy is connecting with people so we know we’re not alone when we’re in struggle. Empathy is a way to connect to the emotion another person is experiencing; it doesn’t require that we have experienced the same situation they are going through.”
I can empathize (and sympathize) with someone who’s experienced migraines and headaches. I can’t empathize (maybe only sympathize) with someone experiencing another disease process (such as cancer or diabetes).
Empathy teaches us that we’re not alone. Although, walking in any disease process can feel like you’re alone on most days. In reality, you’re not a singleton.
Brenee Brown also states that in practicing empathy, we’re not only being kind to the other person, but we’re also being kind to ourselves. This is valuable to understand. In understanding empathy in this manner, we soften our often hard emotions and expectations of ourselves and give permission to experience what we’re going through.
It’s okay. And it’s going to be okay.
I used to be super hard and mentally beat myself up for my debilitating migraines. I used to tell myself that I was weak and needed to “suck it up” so I could participate in life. I used to let the rest of the world dictate how I should feel and what I should do during those attacks. I had a hard time even being nice to myself.
Most people around me, especially the work I did as a registered nurse, didn’t come close to empathizing when I had a migraine attack. I’ve experienced many “get your shit together” attitudes from the masses who didn’t understand and didn’t care (sadly from the healthcare world too).
Practicing empathy for yourself takes time, and it takes practice. Over time, I’ve learned to be kinder and gentler to myself and to give myself both the time and permission it took to overcome and heal from an attack. Each attack was different, but each one was equally frustrating and annoying.
Empathy is also a good teacher. When you take the time to listen to someone who’s experienced something similar, you may learn something new that you’ve never heard before. You may want to try new things to see if you can add a new tool to your toolbox.
4. Lifestyle changes
Change truly comes only when you’re ready and willing to make the necessary changes to overcome your challenges.
What needs to change if you’re challenged by something in your health and want a different outcome? What needs to change if you’re not getting the results you want with a goal you set?
Some changes may be small and subtle, while others are life-altering. Either way, nothing changes if nothing changes.
I knew that if I wanted to become migraine free, I needed to make some changes. I didn’t realize how sweeping and life-altering they would be at that time.
So down the change rabbit hole I went.
I looked at what was working and what wasn’t working. And at that moment, I realized that not much of what I was doing was working well. I needed to make a massive overhaul. This was scary. And this is also where resilience, perseverance, and empathy came into play.
My lifestyle changes were profound. My nutrition choices completely changed. In short: I completely cut out all processed and refined sugars; I started being kinder and gentler to myself; I started changing my mindset and the things I was allowing into my mind. And that’s just a shortlist, the tip of my proverbial iceberg.
I didn’t just change my diet and nutrition alone; I changed everything (and I’m still refining myself today). I’m forever grateful for the lessons learned and the changes I made because of those lessons from my migraine brain.
Through all this, I started aligning with my true self. And mostly, if it went against my gut feelings, I didn’t do it (I have tested my ‘gut feelings’ a few times and went against it, only to know I was right in the first place. I hate it when that happens!).
Because of the lifestyle changes I implemented, I can honestly say that my current and former selves are two drastically different people.
Spoiler alert: the best is yet to come (that’s a song, too)!
One thing for sure about lifestyle changes: they never end. You will constantly be tweaking things for improvement’s sake. You are the greatest and most challenging project you’ll ever experience. Enjoy the journey because it never ends.
What are your lessons telling you? What lifestyle changes can you make?
5. There is hope
Hope is more than just wishful thinking. It’s more than a feeling (Isn’t that a song?)There’s always hope. And if you have a purpose, you have hope for the future.
What are you hoping for?
There’s powerful research on the topic of hope. I challenge you to look it up.
Researchers at Arizona State University say that being hopeful isn’t just feeling warm and fuzzy, but it can also help to improve both your health and your relationships. They’re researching the topic of hope. Here’s an online article from their hope lab that I think provides some great insight into having hope.
In his book, “Man’s Search for Meaning” Viktor Frankl says this about hope:
“Our attitude towards what has happened to us in life is the important thing to recognize. Once hopeless, my life is now hope-full, but it did not happen over night. The last of human freedoms, to choose one’s attitude in any given set of circumstances, is to choose one’s own way.”
Hope is powerful. Hope is necessary, regardless of what you are experiencing in life. If you remain hope-filled, you can change your circumstances and outcomes.
In this context, I remained hopeful even with debilitating migraines and headaches. I was always hope-filled to someday become migraine-free. And there were times when I didn’t think that was possible.
Through my other life lessons of resiliency, perseverance, empathy, and making lifestyle changes, I can write today that I’ve achieved my goal of being migraine-fee. And it wasn’t anything that happened overnight. In fact, it’s taken me a good bit of 20+ years to achieve this milestone goal.
Key Takeaways
- Redefine how you see your past, and you’ll see your future in a much different sense.
- Disease and health teach us valuable lessons.
- The five lessons I learned from my migraine brain include: resilience, perseverance, empathy, making lifestyle changes, and having hope.
- Resiliency is the ability to bounce back after a challenging time.
- Perseverance is continuing to do hard work and pressing forward even when things tend to be complicated.
- Empathy helps us understand that we’re not alone in what we experience. It’s a connection to others who experience something similar.
- Good health doesn’t happen overnight. It takes time, and it takes change.
- Being healthy is a choice, just as being unhealthy is also a choice.
- Having hope is more than just wishful thinking. Hope is powerful and gives one purpose and direction.
- Nothing changes if nothing changes. Only you have the capacity to make the changes needed to transform your desired outcome.
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