< Back to Stories

Katherine’s Story

My story begins with frequent visits to doctors when I was very young due to frequent headaches I would have every week. I would get MRI’s and blood work to test the implications of my headaches. As I grew up my headaches would get worse and get better but in my junior year of high school I could not remember the last time I did not have a headache. I began to track how long I have had a headache for and it has been two years with a constant headache. The pain level gets worse at times with the only solution being to be in a dark room. Living with a headache for two years has been very difficult limiting hanging out with friends, causing me to miss school or extra curricular activities. However, I worked extra hard through school having to push through my migraines which ultimately led me to my dream college, Bates College.

This illness is a genetic condition although two years has been an excessive amount of time with a headache. My mother has had a headache for over twelve years she has had to spend many times away from her family in clinics and/or stuck in her bedroom because of the severity of the pain. This illness has ravaged through my family and has become a burden on us. While I was in high school all of my friends new about my constant headaches and understood the problems I deal with on a daily basis. After being in college for over a month now I have had to explain my story which has caused my to feel isolated. It is a hard concept for many people to understand, I hope to raise awareness for migraines to help not only my family but for millions of people who are just like me.

< Back to Stories

John’s Migraine Relief Story

I had migraines for 45 years.  Sometime, my migraines lasted 3-6 days at a time.   Most migraines lasted only a day.  They typically hit me overnight and I’d wake in pain.  Nauseous, sensitive to light, humidity, and noise was a norm.  I preferred to be in a dark cool room with a fan circulating air.  Five years ago, I was hospitalized after suffering from a migraine for 6 straight days.  My blood pressure was through the roof.  I spent 5 days in the ICU trying to get my blood pressure down and get relief from the migraine.  After a month on medication for blood pressure and migraines, I have not had a single migraine in 5 years.  I’m also taking a beta blocker which I believe is key to the disappearance of my migraines.

< Back to Stories

Heads UP – Episode 28: Living With Cluster Headache

Ashley Hattle-Cleminshaw and Dr. Lindsay Weitzel discuss Ashley’s compelling story of living with Cluster Headache in Episode 28 of Heads UP.

< Back to Stories

Ilene’s Brain Pain

The attack comes from out of nowhere. I try to escape its grasp, but the struggle just makes it worse. I crawl into bed, defeated, yet sleep evades me. The pain is so extreme it hurts to lie down. Then it hurts to sit up, so I walk in circles trying to outpace the headache. I lean against the wall with tears in my eyes, willing myself not to cry because everyone knows that the worst thing I can do right now is cry. Crying makes the pain so much worse.

***

I was working at my dad’s clinic that summer, filing patient charts. One afternoon while eating lunch at my desk, I noticed the room start to shimmer. I thought perhaps I was suffering from a lack of air and sunlight in the medical records department, but then the shimmer began undulating and so did my stomach. Suddenly, my vision exploded like fireworks and collapsed in on itself, forming a nauseating tube of twisted light. I later learned these visual effects were called “auras.” I no longer wanted my lunch. I wanted my daddy.

“Uh-oh,” my dad said when I described my symptoms. I wanted to ask if that was an actual medical term, but a wave of nausea washed away the sarcasm. “It looks like you’re having a migraine. Do you feel any pain yet?” I was pondering his use of the word “yet,” when I became vaguely aware of a throbbing behind my left eyeball. The throbbing quickly grew to a stabbing feeling then finally organized itself into a bashing-head-against-wall feeling.

That day in my dad’s office was the beginning of my relationship with pain—one that has lasted over 35 years.

A Brief History of Migraines

Migraines have a long and painful history. Migraine sufferers of note include Napoleon Bonaparte, Albert Einstein, and Elvis Presley. Generals Robert E. Lee and Ulysses S. Grant also suffered from these excruciating headaches, which might have been the only thing they had in common. Joan of Arc was said to have experienced both migraines and bipolar disorder, which explains a lot.

Like most things in the Middle Ages, migraine treatment was severe. Migraine remedies included applying hot irons and electric eels to the head and boring holes into the skull. Then there was the ever-popular practice of fastening a dead mole to one’s head (look it up).

Unfortunately, many of these treatments caused extreme side effects, such as brain-hole and mole-head. Also death, which while serious, did have the intended effect and was a permanent solution.

Junkie

Sumatriptan was a game-changer. This medication could abort a migraine in as little as 30 minutes, which was why migraineurs often refer to it as a “miracle drug.” When it first came out, it was administered using a primitive device that automatically jabbed a needle into the thigh—only slightly less painful than the headache itself. Side effects were minimal, although while researching this essay, I learned that an overdose of Sumatriptan can cause your blood to turn green, which is kind of cool as far as side effects go.

The most insidious side effect of Sumatriptan is the rebound headache. Simply put, if you take substances too often (even over-the-counter ones such as Advil and Tylenol), it starts to take more and more of it to kill the pain, until you eventually start living in the dark under a blanket.

Two migraines a month became six, then ten and kept getting worse until I couldn’t be pain-free for more than a couple days at a time. And the more medicine I took, the more headaches I got. When I hit 20 migraines a month, my neurologist told me I was having what amounted to one endless migraine (otherwise known as intractable migraine), broken up by mere days–sometimes only hours–of relief.

I spent months more or less unconscious, barely functioning. This wasn’t just hard on me—it was hard on my husband, Bill. Not only did he have to support us both financially since I could hardly work, he had to live with me. I set up a home on the couch and roamed between there and the bedroom for the better part of a year. By then the medication had stopped being effective, and the constant pain led to deep depression, which affected us as much as the migraines did.

I Was a Botox Guinea Pig.

My neurologist reached the limits of her ability to treat me, and it was time for in-patient care, which was how I wound up in a Houston hospital under the supervision of a physician we affectionately referred to as Dr. Evil.

I was hospitalized for a week, during which time I received a boatload of drugs, along with biofeedback, diet restrictions, and the latest magic cure: Botox.

Bill sat by my bedside for seven days of treatments which succeeded in ending a year-long struggle with daily migraines. It broke a cycle of drug dependence and released me from the dead weight and hopelessness of chronic pain.

I wish I could say my migraine journey ended in Houston, but when the barometer drops or my hormones get rowdy, I still suffer from the headaches. My neurologist says at my age the migraines might get a little worse before they get better, but they will hopefully get better.

Despite the pain in my brain, I am grateful for so many things. I’m (sort of) grateful to my father for his diagnosis and to Dr. Evil and his magic potions. I’m grateful to my husband for his love and support. But most of all, I’m grateful I don’t have a dead mole strapped to my head.

< Back to Stories

Lori

 

As a migraine sufferer, I cannot explain the pain to those who haven’t experienced a full-on migraine attack. As from my own experience, it feels like your head is tightened in a vice, very uncomfortable yes.

I was diagnosed with migraines a few years ago. My first migraine started off with frequent little nosebleeds. I couldn’t help but think this really isn’t normal. 

I hoped the pain would go away on its own if I took a paracetamol or two. I went to the doctors and they prescribed Zolmitriptan. Whenever I got a normal headache I was told to take one of these so it wouldn’t become a full-on migraine. It worked for a few weeks but they soon started to wear off and now I’m back to having migraines almost every day.

Early hours in the morning I was starting to feel very sick, sometimes often would throw up, I couldn’t cope with the pain anymore. I phoned the out of hours doctors at the hospital, they told me to book an appointment for an X-ray and scan on my head. I made the appointment and a few weeks later was booked in for my head scan. The day came and I thought I would finally have an answer as to why I’m getting all these bad pains in and all around my head. The scan results came back, nothing. They couldn’t find anything as to what was causing my permanent strong headaches. Yes, of course, they agreed it was a migraine, but they didn’t seem even remotely bothered. 

The number of times I’ve been told to take paracetamol and sit in a dark room like I haven’t tried that. People get them mixed up with headaches, no. A headache is not a migraine. With a migraine, the pain pressure builds up stronger and stronger until it almost feels like your head is going to explode. Headaches can be there for a few hours and then go away, but a migraine lingers forever. 

My migraines attacks sometimes cause my vision to go awol, which is called an aura migraine. My main triggers are bright lights, flashing lights and loud noises. It’s not just a throbbing pain in the head, it also hurts right behind the eye sockets. I am currently suffering from a migraine as I write this. I am drinking cups of tea and I know people would jump up on that saying ‘caffeine is bad for your migraines” yeah yeah but I want a cup of tea.

I would like to continue to spread awareness to those who do not completely understand what it’s like to live with a migraine. Also, to share my experience and help others with the same condition. I would not wish this on my worst enemy.

< Back to Stories

Hormones and Headache

My headache and migraine history started with documented medical concerns at just 5 years of age. I first started at 5 years old not being able to handle heat, and excessive sounds. Then around 11 years old, I started getting migraines every day.  The pain was unbearable.  Concerns from family members led to me getting CAT scans and EKGs. There was a concern that I had a tumor or cancer due to family history, but t was none of those issues. Things worsened in college and I started getting migraines three to five days out the week. My migraines were attributed to hormones levels, and I was informed I had Premenstrual Dysphoric Disorder (PMMD), and a cyst growing on my thyroid. I knew it was more to this issue because I still did not have normal or conventional levels of energy, emotions, etc. Fast forward, at 21 years old I was told it was difficult to have children due to an ectopic pregnancy. It was not until I conceived my first son at 27 years old that I was diagnosed with Polycystic Ovary Syndrome (PCOS), that my life began to change for the better.

I have been verbally telling my story to so many women in my line of work because all cultures have been affected by the same symptoms. Hormonal balancing and fluctuation is very real and can be scary when faced alone and without the right medical team. I now better understand the correlation between being a woman of color, hormones, food consumption, and migraine.

A. Wilkinson

(I love the articles posted here)

< Back to Stories

Jonathan’s Story

I’ve had migraines for the majority of my life. However, about once every couple of months I get these extremely intense migraines. I can’t compare the level of pain from them to anything else I have felt before and it is such a helpless feeling. They’re at the point where they actually hurt and throb much worse when I lay down, but if I stay standing or sit I get very dizzy and weak. Typically I throw up a couple of times and release my bowels, and eventually just pass out from the pain and exhaustion. I understand that going to the ER or urgent care could help, but I’m never in condition to drive when these occur and wouldn’t want to call an ambulance. They have always gone away by morning, aside from the usual migraine ‘hangover.’ I have found they happen more commonly on days when I go out running and after I eat a light dinner later that evening, but that’s not always the case. They start getting light but after an hour or so they abruptly turn into a hurricane in the front of my skull. I am seeking if anybody has any thoughts/ recommendations, or have similar experiences.

Thank you!

< Back to Stories

Learning How To Live Again -Teri Hooper

In my early 40s, I started to get a couple of migraines a month.  After having 2-5 migraine days a month for a year, I went to my doctor who referred me to a neurologist.  Every year after that, the number of migraines increased until I was having 20-25 days of migraines a month.  As a teacher of first graders, it became impossible to continue teaching with that many days of pain.  I ended up on permanent disability by the time I was 50.  That started my 15-year journey of consulting with several headache specialists and trying many medications in an attempt to find something that worked.

During most of my 50s, I was disabled.  I tried a variety of medications and medication combinations.  Every time I titrated off one medication and titrated onto another medication, I would gain 5-10 pounds, gaining a total of 100 pounds within 5 years. Yet nothing seemed to be making a dent in the number of migraine days I was having.  Rescue medications did not do anything except make me feel like I was having an out of body experience.  Besides having constant migraine pain, light and noise sensitivity, and nausea, I was having many side effects of the medications I was using in an attempt to lessen the number of migraines.  

The first 7 years of permanent disability were a blur.  I seldom did anything due to the constant migraine pain. I stopped planning activities with friends and family because I was forced to cancel the majority of the time.  My sleep was choppy and interrupted due to pain.  To sum it up, I became bedridden in the dark cave of my bedroom.

Then I changed neurologists (for the 4th time) and my new neurologist suggested Botox.  She got the authorization approved by insurance and I had my first round of injections.  It was a miracle!  The number of days of migraine went from 20-25 to 2-3 a month.  I was elated!  The days I did have a migraine, the intensity was more like a mild headache and it was usually alleviated with 800 mg of ibuprofen.  I felt liberated.

I continue to get Botox injections every three months to this day.  Since getting my migraines under control, I was able to be a caregiver for my husband and son who both had Huntington’s Disease for the last 3 years of their lives when they needed me the most.  They passed away in 2017 but I am grateful I could take care of them.  Had I had migraines as I had before Botox, I would not have been able to do that. 

I now am officially retired and learning how to live again.  I have lost 60 pounds, exercise regularly, and have reunited with many friends.  I have another son with Huntington’s Disease who will need me in the future but right now he has not started having any significant symptoms.  I’m living the life I lost in my 40s and 50s.

< Back to Stories

Heads UP – Episode 15: Migraine and Depression

Dr. Lindsay Weitzel interviews the Migraine Diva and blogger extraordinaire, Jaime Sanders, about winning in life despite having migraine and depression.

< Back to Stories

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.

Subscribe to our Newsletter

Gain access to the most current migraine and headache information, prevention,

treatment, research, and news.