ALEXES

“My experience is both interesting and complicated. I live with rare debilitating types of migraine. The presentation of symptoms impacts my daily life. I am a recovering perfectionist, there was an attention to detail and speed in completing tasks that has lapsed. Deceit, exhaustion, uncertainty, isolation, frustration -this is my new lineup. Reading a book or talking, my words are jumbled. I miss the spontaneity I had for myself.

The most devastating blows are the loss of fine motor skills, insufferable pain in my head and body, aphasia and being coherent but not able to express my needs or help others to help me during the migraine attacks. My biggest loss was Alexes, the Alexes from before, the grief process, oh how I wish someone would have prepared me for that. After many hospital stays, I did therapy for months for physical/occupational/speech therapies and my treatment was the same for those that have survived a stroke.”

MELISSA & BECKY DWYER

“Melissa lost her smile and her once bubbly personality and just shut herself away from the world. When you are 22 and doctors are telling you that you have tried everything just learn to live with the pain? She truly wasn’t living at that time. We were back to the hospital stays and ER visits where she was treated like a drug seeker, told she was pathetic and treated so poorly by the medical professionals who were supposed to have empathy. They couldn’t see how hard she was fighting just to stay alive.

This is when she started talking more about suicide. She would say if I was an animal they would put me down, they would never let them suffer like this. I knew if we couldn’t get a doctor to take her case that I would lose her and that is what happened on June 7, 2013. The medical community truly failed her and the isolation from people her age made her lose all hope of ever living a normal, pain-free life.” -Melissa’s mother, Becky Dwyer

LINDSAY AND SKYLAR WEITZEL

“I was afraid to have children because I did not know how sick I would become during pregnancy, and because I did not want to pass my illness on to my children. After I had been episodic for five years, I became pregnant with my daughter, two years later I had my son.

My daughter, Skylar, experienced occasional migraines throughout preschool until second grade. She is nine now and they have become less frequent. My son, Kolten, experiences migraine more often and sometimes vomits. Occasionally his migraines are quite severe. Skylar takes care of Kolten and me when we are not feeling well. Our family likes to have movie parties when someone has a migraine. We watch superhero movies to make us feel strong. Skylar makes the popcorn and we all lie in bed together. IronMan makes Kolten feel the strongest. Black Widow is Skylar’s favorite superhero. Mom’s favorite changes all the time. We use positive mental imagery and our family’s love to get us through.”

DON VANDERPOOL

“As a small child, I had terrible headaches. I recall thinking that if I cut a hole in my head and poured cold water inside, it would help. In high school, I suffered two severe concussions. Whether these experiences played a role or not, I cannot say, but they do represent a beginning. In college, I began to get classic episodic migraines. The migraines continued to increase in frequency until they became chronic. After that, I continued to work for many years. I was lucky to work for an office that valued me and understood my condition as best they could. Then things got even worse. Today, I am in a migraine state at least 25 days each month and experience chronic daily headache as well, so I never have a day without head pain.

Given the length of time I have experienced migraine and the transition from episodic to chronic, I’ve tried most therapies used for migraine and many meant for other conditions. Some showed moderate success, while most were ineffective. All eventually proved unhelpful.”

EULA MOORE-MARSHALL

“I’ve dealt with menstrual headaches as a teenager, but nothing like the pain I started to experience while serving in the military in December 1990 while in Riyadh, Saudi Arabia. My head throbbed, I would abruptly stop in the middle of working, walking, or talking and squeeze my eyes and hold my head. I would have daily pain, training became difficult to perform, I couldn’t rest as steady work was required of me. No one understood and no one would listen. I was labeled a complainer, someone who was lazy and faking it. I didn’t know that what I was experiencing were migraines until I returned home. I just called them headaches. After returning home and establishing my daily routine, I was still experiencing pain all day. Lying in bed would make it throb more.”