June is Migraine and Headache Awareness Month. For the month, I’ve written a series of posts sharing my chronic migraine story in an effort to bring awareness to the cause and increase advocacy for suffering patients. This story is not an easy one to write. There are emotional triggers for me all throughout these posts. It was a scary, intimidating, painful, and lonely time in my (and my husband’s!) life. It’s a hard one to write but not a hard one to share because there are people suffering every single day with migraine (35 million people, actually!) and I want to shout from the roof tops — you’re NOT alone! If you are one of those 35 million people and feel alone, please email me email@example.com. I’d love to advocate for you, personally!
Recently, Lukas had a colleague ask him for essential oils for migraine recommendations. It reminded me how that was our life, SO MUCH of our life, in earlier years. Migraine life is NOT my life anymore. And yet, it’s such a big part of my story I want to capture it here. To encourage others in their own migraine reality and to give hope that there IS life outside of physical pain.
For many, many, MANY days, weeks, months, I didn’t believe that. The thought of not living with migraine on a regular basis was a reality I saw no end in sight. A dark, dark tunnel with no light to be seen. I don’t label my life like that anymore and it’s truly because of God’s grace seen through support from my hubby, a few key subject matter experts, and a whole lot of stubbornness and refusal to accept that my life was “as good as it was going to get”.
If you are suffering from migraine, I want to tell you that you’re in hell. Literal, absolute, hell, and don’t let anyone (including yourself) tell you otherwise. If you’ve been battling for awhile, you’re probably in survival mode and the thought of doing ANYTHING probably feels daunting and stressful and overwhelming and… yep, all of those words. Reading this blog post might even be triggering you, the blue light emanating from your phone, the focus required to read the words, you might not even make it past this paragraph and honestly, that’s okay. You are surviving hell and all I want to say is that you’re a freaking warrior for doing your life day in and day out.
I say migraine, not migraine(s) with an “S”, because, even though it’s common to hear “I have a migraine” or “I suffer from migraines” this is actually medically inaccurate. MIGRAINE is a neurological condition that can cause multiple symptoms. Headaches (typically severe) are one of these symptoms. Others include: ringing in the ears, intolerance to light and sound, nausea and vomiting, neck or shoulder pain, numbness or tingling, and difficulty thinking or speaking.
The symptoms I have (and still continue to face occasionally), I bolded in the list above.
My journey with migraine started in college, my sophomore year, sometime in the 2011-2012 school year when I was 19 or 20 years old. I remember sitting in the hallway, spread out with my class as we worked on some kind of design project. All of a sudden my fingers started tingling and then went completely numb. The numbness began climbing up my arm and I started to feel pain in my head. My teacher released me from class early and I started walking back to my apartment. By the time I arrived I was in hell. Thankfully, my studio apartment only had one window and I put pillows in front of it to block out every bit of light I could.
My grandmother suffered from migraine pain for the bulk of her life so I wasn’t totally “in the dark” on what was happening to me. I can’t remember what I did in that moment to relieve symptoms other than hang on for dear life. Attacks came few and far between for many years. I can count on one hand how many attacks I had before I was 25 years old. While in corporate America (2014-2015), things started ramping up a little more. I ended up in a neurologist’s office to get help. The doctor gave me one pill to take when an attack was coming on. That worked…for awhile. Then it became as soon as I felt oncoming symptoms, if I left work, went home, got in bed, and took the medicine, I’d be okay in a few hours, left with a “hangover” feeling, but at least not in pain.
Leaving work wasn’t an option on a regular basis so I found myself back in the neurologist’s office. I don’t remember exact timing on this but it was either right before or right after I met Lukas. At this appointment the doc gave me different medications, and this time it was in two phases. I had a “level one” and a “level two”. Level one was a powder — if I could drink it within 10-15 minutes of the first symptoms, I’d typically be okay. If the powder didn’t work, or I wasn’t able to make a powder potion quick enough, then I’d have the level two option. Level two typically knocked me out mentally and physically and I often times had to go to bed and wake up an hour or so later groggy and “hungover” but again, no pain.
This phase of the journey was when things began really starting to affect regular life. Even the phrases “level one” and “level two” cause trauma triggering reactions in me because of how much life was affected in that part of our journey.
I remember headed to (or from) Niger on a plane where everyone was sleeping, when I started experiencing the first symptoms. I scrambled over the people in my row to get to the aisle, scurry to the stewardess’ cabin, and beg for a cup and a tiny bit of water, to get that powder into my system. I started carrying a water bottle with me everywhere so I’d be able to mix this myself, sometimes even in the cap of the bottle because there was no other option. Then there were the times we (Lukas and I after we were married) were “out and about” and I’d realize I didn’t have my medication. Either before or after the symptoms (typically tingling/numbness) started coming on. The latter would cause a full on panic attack, but the former wasn’t any less intense. I can’t count how many times we have turned the car around to get my medication.
The medical definition of “chronic migraine” is having 15 migraine days a month with 8 days of having migraine features, for more than 3 months. In the summer of 2017, I was officially at that point.
In this season, anxiety really started ramping up. Anxiety around if I had my medication, anxiety about being in social situations and being “stuck” in a migraine attack, anxiety around migraine ruining social situations or events or plans or, well, just about anything. At the time, Lukas nor I had language for what we were experiencing. And I say “we” because even though I was the one with the physical symptoms, I’ve learned now that chronic conditions don’t just affect the patient, they drastically affect the support system, as well!! We didn’t know how to talk about it — all we knew was I could be in intense pain at any moment, and that affected us, oh man it affected us so much!
Speaking of medications, the two I was taking weren’t cheap. We were blessed with incredible insurance so our medication bill (for two prescriptions) was about $40/month, but with the end of Lukas’ Chick-fil-A employment on the horizon, and doing the research on new health insurance, I realized we’d be paying the bulk of the cost of the medication out of pocket. “Level one” medicine was about $10 each powder pack I used and “Level two”, each pill, was $68. Yes, $68 PER PILL. I was at the point of taking both medications 6-8 times a month.
Because of our traveling around, I’d been calling my Atlanta neurologist to get medicine refills but wasn’t being seen by anyone regularly. Once the reality of the cost of my migraine medication faced us, I decided there HAD to be another way. We couldn’t spend $1000 a month for medication, seriously, there were far better ways to spend the money and I was determined (this is where that stubbornness comes into play!) to not affect our family’s finances this way.
In July of 2017, a friend of mine got really into essential oils. She was seeing incredible health benefits from those powerful plant juices and it felt like a great place for me to start. I bought a kit from her and so began my holistic health journey.
Expressing my desire to do things differently, more holistically, Lukas was concerned I wouldn’t be under the care of a doctor. He asked that I get an MRI of my brain to verify there was nothing else going on. At the time, we were living 15 hours away from my Atlanta neurologist so I just found a random one around the corner and got on their books to get checked out. I am so grateful for this office because, not only did they confirm that my brain was “okay” and I was again diagnosed with migraine, they also were the first doctor’s office that introduced me to vitamin supplementation for migraine relief. They recommended the “migraine trifecta” — Magnesium, Riboflavin (B2) and COQ10. I started taking those daily and even to this day, take them occasionally. With the “all clear” from a medical professional, Lukas supported my pursuit of the “other way” of doing things.
So, that’s the beginning! The next phase of the journey was exploring this “other way” which included getting rid of all medication — a pretty scary thing for someone experiencing chronic pain on a regular basis!!!!