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Kat Harrison

When I was 15, I developed a wicked ear infection. After rounds of intervention and antibiotics (but no relief), my family and I decided to move forward with an exploratory surgery. Little did we know that would be the last day of my old “normal”.

In surgery, my doctor discovered a deadly bacterial infection that had started eating away at my skull and seeping into places it shouldn’t. A PICC line was inserted for my prescribed post-op treatment of IV antibiotics.

The following eight weeks are a bit of a blur. While other HS freshman were concerned about who they were taking to homecoming, my house was littered with biohazard containers and a home nurse drew my blood once a week at the kitchen table. Every eight hours, my parents would flush my PICC line with a syringe of saline and hook me up to an “antibiotic bomb”. But about six weeks into treatment, I started facing a myriad of odd symptoms: I would run into vending machines, fall down stairs, and was unable to focus my vision on a singular object. I was dizzy 24/7…but why?

Fast forward to a month (and umpteen diagnostic tests) later, and I was diagnosed as a vestibular wipe-out. The antibiotic had wiped away my entire balance system, an irreversible and devastating side effect that I knew very little of. I had to relearn how to walk, how to read, how to write in a straight line, and how to cut vegetables (still working on the last one). My vision has bounced every single second since.

As a result of this trauma, I’ve also developed chronic, daily migraine (I’ve had one almost every day since I was 15) and have endured a total of 13 surgeries on my ears/skull. I’ve been on over 100 medication combinations (both abortive and preventative), have tried various nerve blocks with mixed results, inpatient and infusion programs, acupuncture, elimination diets, supplements, cranial massages, aromatherapy…you name it. But as it turns out, no amount of optimism or creativity will grant me much relief as my particular brand of head pain is caused by my lack of a balance system. Bouncing vision causes constant throbbing. Some days are better than others, and I’ve mostly adapted to this life of constant pain.

I’ve learned a lot of lessons along the way but the biggest one is this: a diagnosis doesn’t mean your life is over. It just means you have to find a new way to sail. The waters are always choppy, but if you can hold on, the sunset sure is worth it.

My life isn’t easy, but it’s the only one I’ll have a chance to live. So, amidst the relentless throbbing and ceaseless nausea, I’ll keep telling my story to anyone that needs to hear it.

In case that’s you, I hope you know that you’re not alone. You are strong, you are worthy, you are enough. I see you fighting. Just keep going.

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My Migraine Story

I first began experiencing migraine attacks when I was 8 years old. Today, at age 27, I remember my first migraine attack clear as day. I was in grade school and I just could not describe the extent of the head pain I was experiencing. The school nurse proceeded to take my temperature and when she discovered I did not have a fever, she called my mom and I went home for the day. I remember feeling so grateful, because there was no way I would have survived the remainder of the school day. Little did I know that my migraine journey had just begun and I would suffer with chronic migraine for nearly two more decades of my life, and face debilitation as a result in my day-to-day life.

Migraine disease has taken so much away from my quality of life. For example, living with migraine has taken away the pleasure of spending time with friends and family, attending important events, and making it inevitable to have to deal with mood swings and depression. It saddens me that I, and millions of other individuals do not have access to the treatments of today’s rapidly-advancing scientific-based society certainly has the potential to provide. The most important benefit of a better treatment would be to increase my functional ability to perform daily tasks, thereby improving my quality of life.

Due to migraine, I am unable to always keep plans with friends and family and fully commit to long-term goals, such as my educational pursuits. I oftentimes feel guilty when I cannot keep plans that I have made with friends or family members due to a sudden migraine attack. The need to cancel plans or being unable to attend an important event or milestone makes me feel defeated. As a result of missing out on so many fun and cherished events, I often ask myself, “How would life be different if I was not plagued by this disease?”I have also had to restart graduate school twice, change my major and school, and alter the format of my in-person graduate program to an online program, as a means to accommodate for my medical needs as a person with migraine.

As a 20-something-year-old, living with migraine made my college years a challenge at West Chester University. Completing weekly assignments, studying, and maintaining a GPA that would prove me to be a good candidate for graduate school, all on top of the social pressures associated with being in college, was challenging. On a figurative level, in college I sometimes felt as though I was always walking on an emotional tightrope, which, if struck by a migraine attack, would start to become weaker until it could no longer support me. Luckily for me, I was able to receive academic and medical accommodations which allowed me to test with extended time (the typical testing time plus 100%) and a distraction-free environment. In addition, my neurologist suggested that I should not test when I was experiencing a migraine attack. My professors were sympathetic of my migraine disorder and made every effort to accommodate me so that I could be a successful undergraduate student.

Unlike my undergraduate experience with receiving academic and medical accommodations to be successful, graduate school was much more difficult. I had to drop out of a rigorous speech-language pathology graduate program due to my migraine disorder making it almost impossible for me to keep up with the heavy clinical and academic workload. Although I was disappointed and frustrated in this decision, I realize that my health and overall well-being comes first.

Now, I am much happier, and will be pursuing my master’s of science in human nutrition, another field that I am very passionate about. The best part about this program, for me as a person living with migraine, is that this degree is offered 100 percent online, so that I can work on it with a flexible schedule and at my own pace. My journey has been challenging and circuitous, resulting in a jump in careers; however, I did not allow my migraine disorder to discourage me or allow me to give up on reaching my goals in life.

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”  -Theodore Roosevelt

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My Experience with Migraine

As I was prompted by my mother to write about my experience with migraine, I am suffering from one currently. I am chugging water with drips of ginger essential oil and peppermint to curb the severe nausea but I will ultimately have to take my rescue medication, diclofenac and Compazine to settle this episode. I am attempting to study for a final exam I have tomorrow. I am a 22-year-old sophomore at the George Washington University majoring in political science. 22 sounds a bit old to be a sophomore in undergraduate school? Indeed it is as most of my classmates and peers are turning 20 as I turned 22 this past Thursday.

 

I was forced to take a gap year in between high school and college due to the severity of migraine symptoms. I was diagnosed at 16 by my neurologist with New Daily Persistent Headache, NDPH. They were ultimately so debilitating, I had to withdraw from my formal high school and was home- bound tutored, taking the minimum requirement of courses to pass sophomore year.

 

I had tried everything available to me to subside the severe head pain along with the body symptoms I suffered from. I tried botox injections, nerve blocks, DHE infused visits to the Children’s Hospital of Philadelphia along with countless prescription drugs cocktails. I had no relief for an entire year from this nightmare. I was so desperate for this head and associated body pain and nausea to subside, I consulted a more holistic route such as diet eliminations, acupuncture, biofeedback, psychotherapy, and herbal supplements.

 

My junior year, I was able to attend my formal private high school for about half of the year then was severely debilitated again due to migraine I had tutors come to my house again since I was home bound. While my friends were stressing about AP American US History I was just completing the minimum requirement of courses to pass high school. Fast forward to my senior year, my private formal high school is unwilling to accommodate my special needs and I was forced to enroll in Homeschooling.

 

Although I had to leave my friends and formal high school setting, I followed an unorthodox route to get my diploma. I was able to take college level courses as a university near my house to receive high school and college credit which counted towards my senior year high school diploma. The flexibility of a college schedule afforded me more time to receive my special treatments for migraine and time to relax, as opposed to being stuck at school from 8-3. I was also able to choose the class times which revolved around the severity of my headaches at different times of the day, morning being the worst.

 

Although I did not walk cap and gown with my friends from my formal high school, this alternative was a better choice for my special circumstance. Since I was only physically able to meet minimum requirement of material for my classes, I took a gap year from high school to college as my migraine headaches were unpredictable and I needed to complete more credits to graduate from high school.

 

During this time, I was involved in an AMGEN CGRP study at the Jefferson University Hospital Headache Center. I had been living and coping with the symptoms of migraine for 4 years and had more control over my migraine but believe having the privilege to receive this drug from the study afforded me the ability to attend a conventional university in the fall.

 

Today, I definitely experience less frequent migraine headaches and associated symptoms, but I am not completely migraine free. However, I continue to spread awareness to faculty and professors who do not understand what it is like to live with migraine while simultaneously performing at the college level.

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Christine

I have had Migraines since I was 8.  I have done a lot of research and have found the it helps to avoid MSG, increase Magnesium intake and take Feverfew daily.  I have found by doing the Feverfew, when I do have an attack, I only get the aura and a brain fuze.  When I don’t take my Feverfew I have full blown migraine which can take me down for days.  I am all for prevention, not a bandaid to mask the symptoms.

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Micaela Glackin

The University of San Francisco has a rhetoric requirement that students must complete in order to graduate. I decided to get this requirement over with during my freshman year, so my second semester I took the last two required courses: Written Communication and Public Speaking. The purpose of these classes was to help students communicate effectively and convincingly. To speak honestly, the majority of the course content seemed like common sense to me, but I did manage to take many hard-earned lessons with me. Good and bad.

It was during the final presentation of Public Speaking that I had one of my most detrimental migraine flare ups.

USF has numerous resources for people with disabilities and chronic conditions and I am endlessly grateful for the understanding and care with which they deal with these debilitating circumstances. But, not everyone knows what a migraine is or has even heard of them. The professor of the Public Speaking class I enrolled in for the Spring semester of my freshmen year was a little baffled by my condition and subsequent accommodations, but she was respectful nonetheless.

The Public Speaking final took place during my second to last day of classes before school let out for the summer. I had practiced the criteria of the final until I knew it inside and out. I was prepared. The night before, I went to sleep excited to get the last of my finals done and go home to see my family again.

The final was an “Impromptu Speech.” The assignment was to memorize the simplified structure of a successful speech. Our professor had a powerpoint with 144 slides, and on each slide was a different picture. We would choose a number between 1 and 144 and the professor would click to the slide. We had to create a presentation on the spot from the picture we were shown. I believe her exact words were, “to let your brain jump puddles until you’re comfortable with the puddle you land in.” Basically, she wanted us to come up with tangential ideas from the random pictures we chose.

On the day of the Public Speaking final I had been running around like a mad woman. An appointment with my counselor, a meeting with classmates for a group final project for another class, and a study session in the library for another final. By the time I was heading to the Education building I was beginning to feel the phantom pains of an oncoming migraine. But I went to that final as I was and stayed as my symptoms rapidly got worse.

Here was the problem: This class period was my only chance to take the final for this class.

I have been living with migraines since I was eleven years old and I know they can flare up at unfortunate and inopportune times. I always investigate office hours and make-up opportunities for important projects and exams. The professor of the public speaking class was not offering office hours until I would already be gone for the summer. If I did not make the attempt that day while having a migraine I would not get the grade.

Here was what stuck in my mind that day: I have to at least try.

I walked to class with that phrase as a constant mantra. I have to at least try. I was determined and stubborn, as I am in doing everything in this hectic life. I did not recognize my sudden fatigue as an oncoming migraine until I was already seated, and the rule of presentations in Public Speaking was no classmate was allowed to leave while someone was presenting. So, I could not leave the room to take the medicine I had in my kit that I carried with me. Ridiculous, I know.

I could feel my migraine building as the minutes ticked by and classmates ahead of me in roll-call presented. The pain and murky vision were clouding my ability to think straight. I HAD to at least TRY. I had to.

This was my only chance.

Needless to say, my presentation was an absolute mess. Horrific honestly. I had done so well the previous practice/preparation day I could understand the surprise on my peers’ and professor’s faces. Each student is given three minutes to prepare the simplified sections of their Impromptu speeches. Those three minutes slipped through my hands like nothing. I was physically, literally, horribly incapable of jumping puddles with my brain. I could not think straight to save my life or my final grade. Worst of all, sometimes when I get migraines it impedes my speech. And this happened during an oral final for a speech class.

I remember being so frustrated and angry with myself. I am a good public speaker, I knew I could do better and had done better in the past. The odds were against me and my body rebelled against me. I just wanted to at least try. My stress probably made the migraine worse. Putting this all down in words makes me ill. I wish it hadn’t happened.

At the end of class I went up to my professor. My aura was in full swing and I knew I was squinting and twitching my eyes, but I couldn’t stop. I told her I was having a migraine and that it had affected my presentation. I said to her, “It wasn’t because I didn’t try or didn’t care.” My voice cracked when I said that. I remember how awful the words felt leaving my mouth. Like I could choke on them if I said them any louder. God, I almost cried right in front of her. She looked so sad. She asked, “Can you make it to my office hours?” I told her no, I would be gone before then.

I texted a friend to help me walk back to my dorm. I slept for the rest of the day.

This event is going to haunt me. It’s one of those memories that sneaks up on you when it’s late and you’re trying to go to sleep. I wonder what I could have done differently? But maybe I am making it more difficult for myself with what-ifs. You cannot plan for the spontaneous random happenings of life.

What remains is my determination to persevere. This is not the first time something like this happened to me and it will not be the last. I have to at least try. Always.  

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Kristen Wheeler

My migraines/daily tension headaches started when I started 8th grade so I’ve dealt with them through high school, undergrad, grad school, and now a doctorate program. I was very lucky for those beginning years to have a mom who works at a high school in my corner to get me a 504 plan and all the accommodations I needed.

When I chose a college I needed something small and personalized so I wouldn’t be just a number to a professor but a student with a name. I decided not to try accommodations for undergrad because all the professors I had (5-6) were understanding when I took them aside to explain my condition and what I may need or ask for throughout the year but that I would give them as advanced warning as I could and because I was forward from the beginning of each semester they allowed me to do what I needed and did not punish me for needing time on tests or making things up later as I always had a doctors note too. It especially became important when I was hospitalized twice a year those 4 years and would be so determined that I took my school work and books to the hospital with me and tried to turn everything in on time as much as I could. I also usually waited till I was on a break from class too (hello Thanksgiving and Christmas inpatient). Even in my sophomore year I underwent a neurostimulator surgery and took my month break to take care of myself afterwards.

I knew when I chose psychology as my major I would need to pursue grad school and my dream was to get a PsyD. I dealt with a couple professors telling me I couldn’t do it and getting into the school I wanted didn’t happen to people from my college. I was too sick to sit for the GRE exam to apply for my doctorate right out of undergrad but it was alright because I fell in love with a forensic psychology masters program in my city also a small school that’s difficult to get into with my not the greatest undergrad GPA. Again I went without accommodations and explained to my four professors what was happening and always provided doctors notes to excuse absences. I still did hospital trips in those two years with my trusty backpack in my hospital room.

I graduated from that program with a masters degrees in counseling specializing in forensic psychology. But my true passion fell with the military and addictions. I figured that I survived a masters mostly unscathed that I could finally pursue my psychologist dream. I started my doctorate in September 2017 and graduated with my masters that October. Throughout my years with migraines I have also been diagnosed with depression and bipolar disorder and have been hospitalized twice for those conditions as well. Luckily I chose a graduate program that puts so much emphasis on self care that as soon as I told my professors about the migraines or depression, they told me to take my time and take care of myself first! After the first couple semesters I finally pursued accommodations just in case I ever need back up but I’m not too worried yet about needing them because of the support I have received thus far. I start my second year of the program and first diagnostic internship this fall.

I think having chronic pain, invisible illnesses, and mental health issues will in the end help me relate and work with my clients. I know what it’s like to be in a hospital, psych ward, have people that don’t listen, struggle with addiction, and how bad the stigma is against this. One day I will be able to share my story and have it help others as others stories have helped me. My end all be all goal would be to finish my PsyD in clinical psychology with emphases in military psychology and substance abuse and treatment. I want to work in a VA with veterans with possible substance abuse issues and possibly provide substance abuse counseling in prisons. I want to work with the people who are underserved and have problems that people ignore like my own and give them the voice and help they deserve.

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Annette Quinones

Growing up, I always struggled with headaches daily to the point of my friends and family being annoyed that I “always have a headache.” The dull aches each day turned into multiple migraines a week and my first semester of college, I had to drop half of my classes because of the migraines I developed. That semester, I had a migraine that made one whole half of my body go numb, my face slump to one side and I was shaking and screaming in pain. After many tests and trips to doctors, they determined I have episodic migraines with stroke-like symptoms. They also said there seemed to be bleeding in my brain from that first horrible migraine that made me go numb. I missed so much from school and failed so many classes from having all the migraines and they put me on so many different medications, I felt like a guinea pig being experimented on and the side-effects were just as debilitating as the migraines.

 

I finally found a combination of medications that work for me and have identified my triggers and can sense when I feel one coming on so I can take my meds and attack it before it gets me. It’s been three years now dealing with these types of migraines and I just finished my first semester back to school and it was a total success! I received A’s for both my summer classes and for the first time, I feel like I have a handle on my migraines and that they will not control me or dictate my life. I still can only work part-time and go to school part-time because stress is one of my biggest triggers, but I have learned to accept my limits and that I will be accomplishing my goals slower than others because of my condition.

 

The most frustrating thing people say to me though is, “well you just have to push through it if you really want it enough”or “it’s just headache” and people often compare where they are with where I’m at and put me down for not seeming to work as hard or as much as they do. It feels so lonely that no one understands how excruciating the pain is and that you really can’t do a single thing until it passes. It’s been hard but I let them continue to think they are better and let it go because my health and avoiding my usual monthly trips to the hospital is more important to me.

 

Little things like never missing a class or day of work due to migraines are accomplishments to me. Any bit of progress or proof that my migraines are under control make my day. Waking up without a headache is even something I celebrate. Now, I’m actually excited for what I will accomplish in college even though it’s going to be a bit harder and slower paced. I have also spent lots of time educating friends and family about my condition so I have support from people who care about me and understand my limits and even help me avoid my triggers. That has definitely helped me feel less alone even though they may still never understand how severe the pain is because they haven’t experienced themselves. Either way, keep pushing on within your own time and limits and know there are people right there with you who feel just like you do!

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Chris

I had my first migraine during exam week of my freshman year in college in 1966. I had two days to study for one of my exams and couldn’t get myself to start cramming that early. I was stressing about not being motivated to study. The migraine lasted 24 hours, and I still had time to study for the exam. I had had headaches prior to this but nothing so severe. After that, my migraines took on a 24-hour duration.

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Yvonne Brown

Hello my name is Yvonne.

Migraines have affected me all of my life, my “Menace 2 Migraines” started decades ago in my teen years. Because there was very little information about migraines at the time, my parents had no idea what was taking place in my head. Visiting the hospitals and talking to doctors was instilled into schedules as I grew up with migraines. Migraines are brutal and often times leaves you feeling #Isolated.

Small dreams of home ownership and my red convertible seems out of touch. When a migraine hits you like any debilitating disease you lose opportunities.

After carefully researching organizations like yours and “Miles for Migraine,” I know that I am not alone. I have become an advocate for myself and others, for the National Migraine Month my community decided to wear purple on a movie night to raise awareness for this disease.

 

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Monica Giorgetti

I’ve been a chronic headache sufferer since very early childhood.  It wasn’t until my late 20’s that I was introduced from Dallas, TX to the Diamond Headache Clinic in Chicago.

Over many years as a patient of Dr. Seymour Diamond and his expert staff of physicians ( Dr. Freitag & Dr. Nissan and others ) I can say that I’m so forever grateful of finding them and their expertise.  They, along with other headache specialists in Dallas ( Dr. Hurd & Dr. Black )  guided me in managing daily discomfort and/or when a migraine hits.

Thanks again to each physician over the years.