How Migraine with Aura Affects My Life...A Beautiful Noise

Migraine is...

Migraine is a time thief, a life disruptor, an energy suck, an isolation creator, and an anxiety inducer.

I have been a #migrainewarrior for 30 years now. That’s 3/4 of MY LIFE to be clear!

I am not wanting sympathy because there is nothing you can do about it EXCEPT the work of learning about migraines (and related headache disorders).

There were bouts where I got a break. Those short-lived but illuminating moments in time where I lived migraine free and could experience life like you. What a moment of freedom…knowing I could live life without triggers that kept me in dark, quiet rooms for hours just to feel better again.

Before I posted here about my story with migraine - I debated whether I should keep it in the dark room for longer. But, I decided it was time to change the perception of how we see our business partners, contractors, employees, life partners, friends, children, and mothers who suffer from this debilitating neurological disease.

If you are a “non-migraineur” you may never have been in my shoes before. So today, I’m letting you in. I’m sharing with you what’s it like. What my brain and body go through during these migraine episodes. What it feels like when I have them. Ready?

Simply read through the symptoms (not all inclusive) from the image below and imagine what it would be like to live a day feeling like this inside…while those around you thought that it was nothing or “all in your head.”

I have educated a lot of my friends and family (including my young son) about my migraines because this is MY REALITY.

A reality I want to share with you today in hopes to bring more #migraineawareness to this community. Because it’s more than just a “bad headache.”

The #migraines with aura I get are considered a Neurological Disorder just like MS, Alzheimer’s, Parkinson’s, etc. but obviously present differently both short and long-term. NOTE: This is NOT a comparison of which brain disease is worse so no comments about this, please.

One of Many Personal Migraine Experiences...

Every new mom can relate here. Becoming a first time mom with hormones raging everywhere and dealing with the learning curve that is #breastfeeding is no small feat. In fact, it’s such a stressful point in a new mom’s life!?

Now imagine what it would be like if pumping or breastfeeding alone - triggered more than blistered nipples. It triggered migraines that created?a toxic work environment.

That’s what happened to me as a migraine sufferer / #migrainewarrior during my time in the medical field as a physical therapist assistant. It came as a shock to me - because I would expect more understanding from those in the medical field.?

But that understanding was lacking because they were blind to the realities that can trigger a migraine sufferer. And they had not been educated about the invisible pain that we go through.

As my migraines escalated and my son kept getting sick at daycare, my need to call off work made my work environment worse. I was consumed with #anxiety and #depression because I had no control over any of these situations and my employers had no sympathy whatsoever.

After months of experiencing this and more at/from my workplace, I decided to give my notice. I also emailed the CEO of this company to let him know about my negative employee experience as well as the "bullying" to myself and some of my co-workers from those same bosses. He never replied to my email, surprise!

Nevertheless, I did my part by voicing my concerns about this toxic work environment as well as recommending training of these and other higher-ups who lack sympathy and sincere concern for their employees.

Then, employers wonder why the recent "Great Resignation" has happened during Covid? Hmm ?? .

I am not wanting sympathy because there is nothing you can do about it EXCEPT the work of learning about MIGRAINE (and related headache disorders).

If you love/care about someone, are friends with someone, or have a co-worker who “lives” with this debilitating disease - please be kind because we are doing our best beyond what you can see. I have educated a lot of my friends and family (including my young son) about my migraines because this is MY REALITY.

Trying to Remain Hopeful

After a decade of not seeing a neurologist (before this it had been multiple decades) because of past trauma of being ignored, dismissed, minimized, and made to feel crazy by the very doctors sworn to help me. I lost faith in the western medical field and began getting acupuncture which has helped some but not entirely.

Recently, I went to see a local KC neurologist that I had researched and waited for months to see. There were many times that I wanted to cancel the appointment because I was afraid that I would be met with the same fate as mentioned above. However, I knew I had nothing to lose because it had been my migraine and me for years. I was hoping so I kept the appointment.

On the day of my neurology appointment, I had a migraine so I wasn't able to fully communicate as I had wanted. Nonetheless, my new neurologist was patient and listened to me!

SHE told me “I am here for you.” I seriously wanted to ugly cry at that moment but I held it together. She listened while I read off the list of migraine and off-label medications (15+) that didn’t work, lost effectiveness over time, and/or did more damage to my brain/body than the actual migraines.

She listened while I read off the list of migraine and off-label medications (15+) that didn’t work, lost effectiveness over time, and/or did more damage to my brain/body than the actual migraines.

My neurologist was surprised and saddened to hear that the longest time that I didn’t have a migraine was when I was pregnant with my son (minus a couple in the beginning). She offered sincerity, support, and an open ear/heart which meant the world to me!

She also prescribed some new migraine meds that I’ve never tried before to hopefully prevent and treat the onset of my migraines. I just started it. I've already had a couple of migraines so I've been using the new meds to alleviate the progression of them and treat the pain. I am scared, excited, and hopeful about this new medication regimen.

Looking toward the future...

As I look toward the future, this week of rain (and some snow, crazy Midwest weather) has me on the edge of my seat with heightened expectations and anxiety. Even further down the road, the high humidity and heat of summertime that usually kicks my butt back to bed will be another hurdle. I’m remaining cautiously optimistic. Time will tell...

My migraines with aura have taught me...

My migraines have made me be very selective of my time spent with loved ones, friends, clients, and in my business which is a blessing in itself. I am still working on my self-care/love and giving myself grace when I'm going through the migraine phases of prodrome, aura, attack, and post-drome.

In the end, my migraines along with my other health issues have made me an advocate for myself and others who remain silent out of fear or who haven't found their voice yet. That's ok.

"I have a voice

Started out a whisper, turned into a scream

Made a beautiful noise."

-Alicia Keys

Thank you to my new amazing neurologist and to the Migraine World Summit for their dedication, support, and research for those afflicted by Headache Disorders.

These are my own words. Go to my migraine blog post to follow any updates on my journey to be migraine-free (or migraine-less). Help me share my story about migraine with aura...

Credits:

"A Beautiful Noise" by Alicia Keys and Brandi Carlile

*All images except the Migraine infographic are from Canva.

The Migraine infographic credit goes to Headache and Migraine Policy Forum via the Migraine World Summit, LinkedIn page.