dark abstract image of a woman whose eyes are covered by her hair

A Day in My Life With Hemiplegic Migraines

693
693

When I tell someone I get migraines, shockingly the most common response is, “Oh, I am so sorry! I get headaches sometimes, too.” Which, if you’ve ever experienced a true migraine, you know that reply is almost laughable. Don’t get me wrong, I know they’re simply trying to comfort me using empathy, and for that I am appreciative. However, there is a very distinct difference between a headache and a migraine. I am also unlucky enough to experience what my neurologists have called a more abnormal type of migraine: hemiplegic migraines.

According to Healthline, hemiplegic migraines only affect .03 percent of Americans, and cause (usually) temporary paralysis and weakness along one side of the body, often mimicking a stroke. The symptoms can last for several days. For someone with this disease, life is experienced differently, with adjustments being made constantly in order to keep their symptoms at bay. Now I cannot speak for everyone, but here is a glimpse into what an average day for me is like as someone who chronically struggles with this disease:

5:30 a.m. My alarm jolts me awake. Due to the migraine that lulled me to sleep the night before, my head feels like it’s vibrating and my whole body feels like it was hit by a car. The two medications I took to try and make the migraine go away last night plus the three medications I take every night to try and prevent them from even occurring aren’t making my tiredness any better. I take my two morning medications and get ready for school.

6:30 a.m. I’m on the road. The weakness down the left side of my body made it take me a little longer to get ready than usual, so of course I’m running late. I scarf down some food, knowing if I don’t, I’ll pay for it later. I also chug a cup of coffee, hoping the caffeine will propel me through the rest of the day. The commotion and lights of the traffic physically hurt me.

8:40 a.m. My first class of the day. Since I commute to school, I only have classes on Tuesdays and Thursdays, so they’re back to back. 12 credits this semester. My brain is literally tired from the night before, so I’m struggling to focus on my professor’s lecture. Because I sometimes miss class due to my disease, I try to make an extra effort to participate in discussions, so I shake myself awake.

1:50 p.m. I’m on my way to my last class of the day. With all the lectures, class discussions and tests, my brain feels like mush. Because of the lingering weakness in my left leg, it’s also sore, so I’m starting to limp a bit. This is the turning point of the day. If I’m going to get an attack, I’ll usually know by this point. Unfortunately, today is one of those days.

I begin to feel just…uneasy. A sense of dread creeps into my body. Words spoken to me become confusing, colors and sounds seem more intense. My right arm begins to twitch a bit. However, due to the confusion and “out-of-it” feeling, I don’t become aware of what’s going on until I feel that dreaded dull pain that begins to almost ping above my left eye. Knowing I’m in trouble, I chug a bottle of water and eat something, hoping it’s just my body telling me I’m dehydrated or my blood pressure is low. I learn in about 10 minutes this is not the case. I sit through the rest of my class, then limp to my car in search of my rescue medication.

4:00 p.m. I’m on my way home. I took my first rescue medication a little too late, so my attack is still slowly creeping on. The pain at this point is starting to make me nauseated and increases with every movement, so I keep my head straight on the road. I find myself shaking my left leg and arm and patting my left cheek, trying to gain some feeling and movement back, but it’s no use. The pain and confusion I’m experiencing is getting worse by the minute and the afternoon traffic reduces me to a crawl along the highway, so I begin to slightly panic.

5:15 p.m. I almost drunkenly stumble into my house. My mom instantly knows what is happening and stands up to help me. I practically fall into the bathroom, and throw up my food from the day into the toilet, and press my head onto the cold tile floor. The cold helps. My mother helps me into bed since I can no longer walk by myself and I find out my speech is also gone. My body begins convulsing due to the pain and chaos going on in my brain. Any sliver of light that manages to creep into my room sends a fresh wave of pain throughout my whole body. I writhe in pain and eventually, my conscious and sleep states begin to slowly intertwine and I feel like I’m coming in and out of a nightmare.

1 a.m. I find myself awake. My house is quiet, and my brain feels like it’s made out of mud, but my pain is mostly gone, so I am thankful. I find myself extremely thirsty, so I grab my water cup next to my bed and chug it. Due to the continued weakness and soreness in my body and face however, I spill most of it down my face and pillow. I don’t care. My head falls back onto my pillow with a thump and I’m out like a light, my body already trying to recover so I can gear up for the next day.

We want to hear your story. Become a Mighty contributor here.

693
693

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

To My Well-Intentioned Friends: Supplements Won't Solve All My Problems

952
952

My husband has been dealing recently with what the chronically ill are all too familiar with: Well-Intentioned Friends. He has a guy who sells something related to the ketogenic diet, and he is pushing hard because according to him it will “solve all my problems.”

Welcome to the world of the chronically ill — where you become to go-to person for everyone who has a nutrition supplement, vitamin, wrap, detoxifier, oil, or enema offering a potential cure.

I have hemiplegic migraines. One in 10,000 people have my condition. The closest person I’ve “met” online lives seven hours from me. I know you don’t mean to be insulting, but if you think for a moment I didn’t go through my desperation “phase” where I tried everything, you’re wrong. I did.

I tried it all. I tried oils, veganism, juicing, expensive vitamins, wraps, greens, high fat diets, low-fat diets, yoga, meditation, sitting with my wrists and ankles in cold water, and using specific aroma washes.

The chronically ill have tried it all.

So stop. Please. Stop trying to sell us something when you don’t understand our illnesses. If you really think it will work — offer it to us for free at first, because I promise you, we have a small fortune invested in failed cures and medical bills.

There it is. Your friendly message from the other side of the fence.

We need friends, not sales pitches.

952
952
TOPICS
JOIN THE CONVERSATION

Why I Wouldn’t Give Back My Hemiplegic Migraine Diagnosis for the World

135
135

On December 30, 2014, I walked into the neurologist’s office feeling indifferent and tired. So tired of fighting. Tired of not having answers to give people when my face went slack and I could no longer speak correctly. Tired of sleeping constantly to relieve the pressure in my skull.

I had an MRI three weeks prior to this visit, and those three weeks left me wondering if I had a brain tumor or some other mysterious illness. I kept these feelings somewhat detached from my day-to-day life, however. I didn’t obsess over the change happening in my life.

The neurologist was a giant man. He had his own tics, blinking his eyes a little too hard as he asked me to squeeze his fingers as hard as I could. I failed this test, my right hand being much weaker than my left. This was understandable, though, as I had been having “strokes” for months. This man asked me question after question, but not letting me get into detail about how I had to go to the emergency room on Christmas day or how my left leg felt dull pain constantly.

But then he asked the question that solved the puzzle we had been piecing together for months: “Do you get headaches with these episodes?”

I always had headaches, I told him. Sometimes they were worse, yeah, but I just thought every stressed-out teenager had them. But he knew. Then he told me something that changed my life forever.

I had hemiplegic migraines.

Prior to that day, I had never even heard the word “hemiplegic,” and suddenly it marked every aspect of my life. I was started on a barrage of drugs and sent home without much of an explanation as to what it was. In my silly brain, I felt relieved that it was just a migraine because so many people have migraines. It’s common.

I was so naïve until I Googled the illness and found that I was part of the 0.03 percent of people who are affected by hemiplegic migraines, according to the Migraine Center.

What happened next is something I would never forget. My mother told me not to tell anyone. Her reason being that boys would never date me, and if employers found out, I would never be hired. So I hid my disease. I had an EEG and another MRI the next day, New Year’s Eve, and I picked glue out of my hair as I rang in the New Year with my friends. They didn’t know. I didn’t realize my world had been irrevocably changed.

Eventually, I had to ship myself back out to Boston to live alone, so I was required to tell the people closest to me. No one knew the extent of how this was all affecting me, and I cried myself to sleep so often. I put myself on the subway, walking the mile there and spending 30 minutes on the train to get to my primary care doctor. I was alone. I had to do this alone.

I realized that showering, using a hairbrush and having my hair tied up all gave me a raging migraine. Raging migraines made my face droop. No one liked to look at me like that. So I cut all of my hair off.

Soon, I couldn’t swallow.

I couldn’t drink.

I was “no fun.”

I was restricted to staying home and playing card games with the few friends I had left, and even those friends didn’t know what was happening to me. Heck, I still hardly knew what was happening to me.

Two years later I sit here, fully aware of my mortality and knowing there is no cure. Eighteen years old was too young to find out that you’ll be in severe pain forever, and every relief that you try is a shot in the dark. My migraines have worsened over time, and now everyone knows. I speak now and voice my illness, so that people know how to handle me. I have a life that I thought was taken from me that day — a life I know how to navigate and control. I still know how to smile and have fun. My hair is growing back. I’m making new friends in a new home.

My diagnosis irrevocably changed me, but I wouldn’t give it back for the world. The person I am now is a person I love, and I would never have gotten here without hemiplegic migraines.

135
135
TOPICS
JOIN THE CONVERSATION

Why I Choose to Share Posts About My Hemiplegic Migraines

447
447

I have to admit, I did a little victory dance inside the other night. I was reading about migraines on Mayo Clinic’s website, and right there, in their main section on auras and migraines, was a little one sentence blurb about hemiplegic migraines.

That’s it, one sentence. But that one sentence is a huge step.

I have suffered with chronic migraines for two years now. Every kind of migraines possible, I’ve got it. Yup, even hemiplegic migraines. Hemiplegic migraines in particular are so severe that they mimic strokes. I have a facial droop on the left side of my face, I start to stutter, and everything in me just shuts down when I get a migraine. If it gets really bad, I melt into what I call “neurologic goo” which is where all of my neurological and neuromuscular systems just go haywire.

I share about my condition with you, my family and my friends because a “migraine” does not adequately describe what I go through. When I say I have a migraine, most people think of splitting headaches, vomiting, and light sensitivity. (Don’t worry, I get those too). But this, this hemiplegic monster, is beyond any kind of migraine you could have possibly dreamed in your life.  It’s not “just a migraine.” It’s not “just a headache.” It’s a whole systemic shutdown. It’s partial paralysis. It’s rare — so rare that I often have to explain the condition to my own doctors. So yes, I am going to share articles on it. Yes, I am going to raise awareness.

And while, I’m at it, I’m going to do the same for other disabilities, other diseases, and other plights. We live in this wonderful bubble on social media, a perfect highlight reel of all the wonderful moments in our life. But there are those of us, many of us, struggling in silence and in sickness. So I share. I share articles, and I share my own story. My “behind the scenes” might not compare to your highlight reel, but to me, this is my reality. I live it and own it. If my sharing or my writing helps someone, somewhere, then what I have done is worthwhile.

Follow this journey on Living Without Limits.

447
447
TOPICS
JOIN THE CONVERSATION

5 Tips for Dating Someone With Hemiplegic Migraines

97
97

I’ll just jump right in:

1. There is a 100-percent chance that at some point when we are hanging out I will get triggered, and I will get a migraine. It’s not your fault, so don’t throw any pity parties about it.

2. Try not to let the appearance scare/intimidate you. As implied, when I get these migraines my entire left side goes weak/paralyzed. So I’m not looking too hot when they hit me. Just remember I’m still me underneath that storm of neurological chaos.

3. Stay with me. Even if you think there’s nothing you can do and I’ll just be laying there anyway, stay. Sometimes I can’t communicate what I want because my brain isn’t working enough for me to get the right words out, but if I could tell you to stay I would. It’s a possible undertaking when I have a hand to hold.

4. Celebrate little victories with me. Get a little excited with me when I take my first few steps without my walker in eight months. Cheer me on when I can finally walk unassisted after using a wheelchair due to hemiplegia for almost a year. It’s even more special to have someone by your side through all of it.

5. Never stop pushing me to get better. Always encourage me to work harder and do the best I can.

There are a few more, but I’ll leave it at that for now.

Image via Thinkstock.

97
97
TOPICS
, Contributor list
JOIN THE CONVERSATION

Why Do So Many Still Think It's OK to Do This to Our Students With Disabilities?

8k
8k

Frankie, my middle son, came home from school in a bad mood.

“Mom, I saw some of Jaden’s classmates doing chores around the school today. I thought they weren’t supposed to do that anymore. It made me mad, and I want it to stop.”

Frankie and Jaden are 17 months apart in age and have an extremely close relationship, much like twins. Frankie is forever Jaden’s best therapist, best advocate and best friend.

Let’s back up.

Two years ago, Frankie came home from school and casually mentioned he had seen his brother’s class when they “delivered the gym shirts.” Jaden was (and is) in a categorical classroom for children with autism.

I didn’t really understand what Frankie was talking about, so I asked him some questions. It turns out the kids in that class were responsible for doing the gym laundry for the entire school. On further inquiry, I was told they also emptied the paper-recycling bins from the classrooms each week.

Now, I am all for kids having responsibilities, and it just so happens that Jaden does his own laundry and other jobs around our home. But – and here is the key – so do the rest of us. See, I don’t just make my “special” child do the work while the rest of us engage in more interesting pursuits.

It isn’t just the autism program doing the work. The other categorical classes – the rooms for students with cognitive and multiple impairments – are doing it too. Jobs from delivering mail to washing lunch tables and taking out the trash. My older boys tell me of the jobs they see the students with special needs doing around their building as well.

These programs are put in place under the guise of “vocational training” but start in late elementary school – much younger than I believe is appropriate for job training. “Typical” students have the opportunity to take vocational training beginning in 11th grade. Besides, these “jobs” rarely do a good job of targeting actual employment skills. In addition, the students are required to continue to perform the tasks much longer than it takes to achieve mastery. Even though some students admittedly take longer than others to acquire skills, performing these tasks for years is not conferring any measurable educational benefit. This is unpaid labor, not education.

A good measure of whether or not we are doing right by our students with disabilities is to use another protected class as a barometer. For example, would it be OK to have just the girls doing the cleaning jobs? What about just the non-white students? Clearly not.

Then why do so many still think it is OK to do this to our students with disabilities?

I contacted the schools where Jaden attends, and they didn’t agree with me that the practice should be stopped. I also contacted the local ISD, and though the person in charge of IDEA compliance agreed with me in spirit, the program isn’t breaking any laws, so he is powerless to make it stop.

I went back to the schools. I suggested the program be turned into an all-school project, where homerooms rotate responsibilities for taking care of their school. Adding typical peers to the mix would improve social skills – and studies show that “soft skills” are the most important skills for kids to learn in schools if they are going to be employed as adults.

But the general education students don’t have time to do such jobs because of all of the requirements under Common Core, I am told. So essentially, they have better things to do.

Somehow, it makes sense to the schools to take the kids who need the most instruction out of the classroom and occupy them with jobs that confer no measurable educational benefit rather than giving them intensive instruction to help them achieve their best lives.

I have since opted Jaden out of this program and replaced it with real learning opportunities, but wasting the time of these precious students isn’t even the most damaging thing going on here.

The fact that these students are doing menial labor is not lost on the other students – the same students who will grow up to be community leaders, employers and neighbors of the students with disabilities. What is this program showing them? Programs like this promote the attitude among the non-disabled students that kids who are different are inferior – that they do not deserve the same education and can only learn menial tasks.

This is insidiously damaging to the disabled students’ dignity and to their futures.

The students of today are the community of tomorrow; if we are going to have a truly inclusive community in the future, we need to promote fairness, inclusion and equity for all right from the beginning.

These practices of using students with disabilities for free labor must stop. Not just for their sake, but for the sake of the typical students who are being shown this 1984-esque caste-system where they are the Alphas and the disabled students are relegated to Delta status.

We have come a long way in the quest for disability rights – Jaden lives at home with his family, not in an institution, and attends the neighborhood school instead of being shipped across the county to a segregated building — but programs like this “vocational training” show that we still have a long way to go. Even with all of the rules set forth in IDEA, students with disabilities are often still being set apart from their non-disabled peers in ways that are inappropriate, stigmatizing, and destructive.

We need to stand for children with disabilities and their right to the same high-quality education as non-disabled students. Segregation and discrimination hurts everyone in the long run. We need to ensure that everyone belongs in our schools.

Back to Frankie.

I explained that Jaden is not allowed to do the jobs, but that the schools have not stopped this discriminatory practice yet, so for now, it is up to the other parents to opt out their own kids.

I am sad to see him upset but pleased this injustice upsets him. I wish he was living in a better world, but I am so proud he is willing to stick his neck out to make the world better. 

Follow this journey on Bonum Vitae.

8k
8k
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.