Living With Migraines
I've personally only experienced migraines a few times in my life during my miscarriages. It was horrible, and I could not imagine someone getting these once a year, once a month, or once a week. It gave me some understanding of when friends would tell me sorry, I can't meet up today because I have a migraine. I'm embarrassed to say this extroverted helper was understanding and a little like, "do they really not want to hang out with me, or is it a migraine (which I used to think was more of just a bad headache)"? Then my oldest child had her first cycle and first migraine, which was like a classic migraine. Pain and sensitivity to light were her symptoms. Some Motrin at the moment and magnesium daily, and she was good for a year, and then November happened (she will tell you more below), and I experienced one of the worse "headaches" of my life after miscarrying for the fourth time. These experiences changed my outlook entirely on migraines. It wasn't just a "headache." I am passionate about creating awareness now and helping others with this topic nutritionally and exercise-wise. I am sharing my daughter's story from her point of view to help make that awareness, and I hope I can be encouraging and hopeful to someone going through migraines.
"A Day to Remember" By Samantha Stitt
Life can change instantly, and when you're young, you don't think it can happen to you, but I'm here to tell you that you are wrong. It occurred to me. It was a dreary evening in November of 2018 when I experienced my first dizziness/migraine episode, which I would soon find out to be called vestibular migraines, but not soon enough.
There is no cure for vestibular migraines, and no one knows precisely what causes them. It's a genetic neurological condition that only 1-3% of the world's population experiences. It is known as the "invisible disease." You could never tell someone has it by looking from the outside in. It's rare enough that I bet this is the first time you've heard of Vestibular Migraines.
It's been four years since my first migraine attack. I was 15 years old. In November of 2018, My Dad and brother were at Great Wolf Lodge for the weekend. My mom decided that she wanted all of us to spend the rest of the weekend up there. We began to head home and took a quick pit stop at Fisherman Island to explore for a bit. I remember listening to the waves tumble and crash into the rocky outcrops of Fisherman Island State Park. The wind was blowing fiercely through the shaggy pines, and snow swirled around me in all directions. I felt like I could face anything this world had to throw at me. I trekked back to the vehicle where my family was getting ready to leave, glancing down the isolated, snow-covered road.
This moment would lead to an endless array of doctor appointments, restless nights, and suicidal thoughts. I started to feel uneasy on my feet. As if the world was shifting from underneath me, even though I was not. The frozen ground beneath me looked pretty tempting to collapse on. After I had regained my balance, I thought to myself, "What the heck was that?" and knowing me, all I did was tell my mom how I felt weird. We headed home as if nothing had happened. This would be the last time I'd feel like a typical teenager again.
The next four years would be a living hell. As time passed, I progressively got worse. I went from doctor to doctor; nobody had answers. My body didn't feel like my own anymore. I wasn't in control; it was in control of me. By my senior year of high school, I had so many absences it was like missing half of the school year. I was one "E" away from not graduating. I was constantly bedridden, feeling hopeless and lost as the world around me kept moving. I was trapped lying in bed for days pleading to God to remove this pain and suffering. I felt like I was walking on a boat 24/7, 365. I could barely go to the bathroom without the world spinning around me. Even if I closed my eyes, it wouldn't go away; there was no escape. I'd fall asleep hoping it was all just a dream but instead wake up with an unbearable headache and nausea on top of the dizziness. By this point, I had already had an MRI and blood testing, just for them to tell me everything looked normal. I wanted to scream at them, but I didn't feel normal! I knew what normal felt like. I remembered what it was like before this dizziness took hold of me.
When I thought it couldn't worsen, I started having a form of blindness/blurriness that would last around half an hour. That would cause me to become tremendously nauseous and have a pounding headache that would last exactly 2-3 days. It was such a severe headache that it felt like the insides of my brain were being ripped apart. The pain was unbearable. Which I would find out were called ocular migraines. These episodes would last days to weeks to months with no end in sight. I lost an immense amount of muscle mass in my legs and everywhere else in my body. I became weak and exhausted.
On December 10th, 2020, at 2 am, I was thinking of ways to die. After hours of sobbing, I stood up. I crawled out of bed with tears smeared across my swollen cheeks and stood directly in front of the world map hanging on my beige-colored wall. I gazed upon it and realized how much I still wanted to make a difference in this world and couldn't make a difference dead. I realized how much more of the world I wanted to explore, the people I wanted to meet, and how many more people I wanted to help. There was still so much life left in me. I glanced over to the pictures hanging by clothespins on my wall. There were pictures of when I was baptized, my mission trip to India, and my family. At this moment, I remembered who I was and how much my life was worth fighting for. I was a gladiator determined to win. Sick and tired of lying in bed, I was ready to do something about it.
Soon after that night, I had a new neurologist who referred me to an ENT specialist, where I would finally walk out knowing what was wrong with me. They told me I had Vestibular Migraines. When they told me, I was like, are you serious? All this time, it was just a migraine. I was dumbfounded, relieved, and upset at the same time. I couldn't believe a migraine could change my life so drastically. I was relieved to have an answer finally but quite disturbed that I had desired to die from what most people call "bad headaches." I was devastated when they told me there isn't a cure for Vestibular Migraines, and they don't know what causes them. More neurologist appointments and trying more medications than you can count, each one making me feel worse than the last. I felt like giving up, but I wouldn't let this disease pull on my strings anymore. I wouldn't be beaten, not this time.
I became a different person than who I was before. I researched for hours, trying to find solutions to this disease tormenting me. I was able to find some things to try, and over time, I started to see a difference. Found the book “Victory Over Vestibular” and had my first appointment with author and neurologist Dr. Beh. I started taking certain supplements (and the right amount), exercising, avoiding specific triggers, massage therapy, and getting to know my body. What it could handle and what it could not. My lifestyle started to change for the better. Let's say I wasn't a couch potato anymore. I stood up and got out of bed in the morning, stubbornly pushing through the waves of dizziness and vertigo to exercise. I got stronger, and my vestibular migraines lessened dramatically. I could live again, and I wasn't in prison any longer. I was taking back control. I got back into the things I loved to do before migraines. I was strong enough to hike, paddleboard, backpack, paint, read, draw, and sing. I was able to do what I loved without going blind, having a throbbing headache, or debilitating dizziness. I had found joy again.
Being a teenager with migraines is one thing, but being an adult is a whole other ballpark. You can miss school, but you can't miss work. The real world doesn't work this way. It's survival of the fittest out there. I've had a few instances where I had to call in because of a migraine episode and later overheard my managers gossiping about how I was always sick and didn't care about my job. Let me tell you, and I was angry because I don't slack off. Society is all about how much you can work and how much they can exploit you. Reality check, they don't care about you. In the workplace, migraines are underrated, and they are unheard of. Since I was working, I needed a form of transportation besides my parents being my chauffeur. Changing my lifestyle to accommodate my migraines made all the difference. I finally received my driver's license after five years of having a permit, which was a huge accomplishment for me. I had pushed myself further than I ever thought I could go and was able to purchase my first car and attend college. Hiking again without triggering migraines and enjoying nature.
It has been a long road to get to where I am now, and I am stronger than I once was. I have become a force to be reckoned with. Before having migraines, I was just this shy, unconfident girl dwelling in the shadows. This experience shaped me into the kind of person I am today. Someone who doesn't back down from a fight. Someone who is confident, resilient, understanding, patient, persevering, comical, and strong. I had found what most people my age don't see. In my darkest moment, I found God, and when my faith faltered, and my body failed me, Jesus was there to lift me back to my feet. He helped me remember who I was. He helped me remember my purpose, and because of Him, I'm still here and so much better spiritually and physically.
Hiking again! Pictured Rocks Dec 2022 for my 19th birthday
Bea here again. When I read her story it broke my heart; however, I am so proud of my daughter, and I wish we would have found the correct information sooner as a mom. Be consistent sooner. Once we took all the information we finally learned after trial and error, medical route (that made it worse on her end), a neurologist who listened and knew both medical and alternative medicine, and diligently finding what helped and to do it. The right neurologist didn't want to just put her on another medicine, and her and I learning more nutritionally what to do. However, hindsight is 20/20, right, but I hope you can find the correct information sooner! Please look into vestibular migraines, IBS, and a dietitian who can help. I also want to say get on amazon now and buy the book "Victory Over Vestibular Migraines" this is helpful for all types of migraines! I also recommend the neurologist (the only one I'd recommend), Dr. Beh, in Texas. He does telehealth as well! Look for workshops coming out (I'll add a link to the blog when it does) to help you get on the right path sooner than later!
What to do now!
Drink at least 90 oz of water a day.
Limit your caffeine to less than 180 mg a day.
Get 7-9 hours of sleep! I mean this. Consistently.
Get blue light glasses!
Practice healthy stress coping skills.
Massages and a chiropractor can be helpful.
Avoid missing meals and have consistent snacks. No more than 3-4 hours without eating.
Get the book!
Don't go on an elimination diet without the guidance of a dietitian.
Don't go buy magnesium because you heard it could be helpful, and certain magnesium supplements can trigger migraines. Supplementing needs to be under the guidance of a dietitian or doctor. So book that appointment with them. I'd love to help.
Blessings- Bea Well
