Migraine the Invisible Devastator
I was first diagnosed with chronic migraine in my teens and it has been a downward slope with my migraine disease since then. I recently began to put together what I believe are missing migraine puzzle pieces from the time I was a baby, to growing up, to the time when I was diagnosed with migraine.
Identifying my migraine triggers
These puzzle pieces started coming up when I recently had what I thought was migraine with a new aura. I was seeing these pink and green sparkling dots in my vision, which triggered a childhood memory of these same types of dots and feeling so tired that I needed to lay down for long naps especially in the warmer months. I have always since youth been heat sensitive and once almost had a heat stroke in middle school. I was the only one who seemed so affected by the heat, even though I was well hydrated, and had to be taken inside to the nurse to cool down. I recently found out that heat can be a migraine trigger and sensitivity.
The sparkling dots then triggered other memories to come to the surface. Like how I was lactose intolerant and reacted severely to where I would get extremely sick, vomiting, my head would hurt and throb terribly, my vision would blur, and I had vivid nightmares when sleeping and usually wake up to being sick. And I recently read a medical study conducted that shows a possible link between lactose intolerance, lactose, and migraine.
I also recently began to see a possible connection from what my parents have told me about when I was a baby to early childhood years. I used to get severely carsick (even now in adulthood, I still get nauseous when traveling). I also used to feel sick to my stomach a lot in school and would visit the nurse for tums, Motrin, and to lay down.
All of this led up to me in high school with severe chronic migraines triggered by lights in school, weather, menstrual, and other factors. I'd have trouble focusing on school, forget to do assignments, or push them off till the morning or lunchtime on their due date. I'd constantly be in the nurse's office for tums, Motrin, and to lay down sometimes most of the school day. I'd come home shut myself in my room, shut my curtains, and fall asleep for a few hours till dinnertime then work on school work. With a medication, for a little while, my migraines were better managed, but then it became ineffective and I started feeling off on it. Then my frequency and severity of migraines began worsening over the next few years while I was in college. My PCP did not make my concerns feel heard, he just acted like I was concerned about nothing and would often not even address migraine other than to put it in my chart for that visit. My last visit to him my migraine had gotten even worse and I was having more symptoms with it. He made fun of me and basically stated there was no way I could have so many symptoms related to migraine and belittled how severe my migraine was. He refused to do anything other than list migraine and treat the sore throat I had that day, which wasn't even the reason I made the appointment. It took me months after this experience, my parents urging me to see a new doctor, and my migraine worsening even more to the point that I had it daily with a lot of severe symptoms for me to reach out to a new PCP. Fast-forward... I was diagnosed with several different things; complex migraine, status migrainous, intractable migraine with aura, fibromyalgia, just to name a few. This made it confusing because I had several different migraine types diagnosed without much explanation as to what they meant and what they were and at the time didn't think to ask.
Working and disability
I tried working first when my migraine and physical health turned worse and had to stop, and again in I believe 2019 in what I thought would have been a better fit health-wise. My migraine continued to worsen, my fibromyalgia flared, and I had fevers and as a result, had to resign from the position. It took me about 2 weeks of pretty much just sleep, resting, and taking it easy to get to a new normal with my conditions. Since then I have had this migraine every day for over 3 years with no relief in sight and have been fighting to receive SSDI. I have also tried numerous medications, which I have had reactions and/or unpleasant side effects like severe and crippling stomach pain. Some have questioned me not believing I have reacted to all these medications. But, what they don't realize and I've tried to explain is that I even react in similar ways to foods and have also developed severe skin reactions to adhesives.
The reality of living with an invisible illness
I have learned a lot about myself, migraine, misconception & stigma of others surrounding migraine & invisible disabilities. I am grateful for this, even though it has been a tough and challenging road, especially when faced with those who have judged me because their definition of disability is visible disabilities. Migraine along with my other conditions have devastated my life, plans, career, relationships, and many other things. In the end, it is God & my faith, family, and others reaching out that continues to see me through dark days.
Have you shared your migraine story with us yet?