Chronic Migraine Awareness

Chronic Migraine Awareness, Inc. would like to thank Elizabeth for sharing her story with us.

Life is my trigger and I tough through it with a strong mindset! That’s my motto now, but it took me a long time to get this point. Living with migraine and then it turns to chronic migraine and then chronic daily headache is soooooo disabling!!

The first time that I can remember experiencing head pain with nausea, vomiting, seeing squiggly lines and bright dots, I was 5. My mom knew I was sick because I was outside lying on the porch when my norm was playing around like a wild child. She quickly carried me into the house and put me in the bed with a cold towel and Tylenol. This headache lasted a couple days and I missed school. Who would have thought that a 5-year-old could suffer from migraines?!?!

At the time, I didn’t know, and my mom didn’t think it was migraine because I didn’t have head pain as much as she did. She had them all the time. I didn’t suffer from another bad headache until I started my period at age 12. My mom and I just blamed my periods. It didn’t help that I had hay fever and allergy problems. So, I just thought I had bad sinus headaches and headaches during menstruation.

My junior high and high school life would get interrupted with this head pain. I was a cheerleader and ran track. Sometimes I would have to sit out because I had a headache. These headaches would always last for a couple of days. That led to me always missing at least 3 days in every month from school. I had to make up days at the end of my senior year because of the absences. I didn’t get to enjoy the last senior day or the senior banquet. I had a headache during the senior banquet, and it lasted for three days. Good thing I didn’t have one during graduation.

The headaches became more frequent especially after I had my first son at nineteen. I finally went to a doctor and was diagnosed with migraine. I was given narcotics, which is a big no-no, and an antidepressant. As I think now, this was the start of my migraines getting worse due to rebound headaches. I went to different doctors, pain specialists, and chiropractors. Their tactics didn’t work because I was given more narcotics, Fiorocet, and different types of anti-depressants. The chiropractor did me so bad that I couldn’t move for a couple of weeks and ended up going to the ER and then getting referred to physical therapy. Going to physical therapy was the first time I received some type of relief. I didn’t take advantage of continuing physical therapy because I moved to Fort Worth, TX in 2010.
When I got to Fort Worth and went to a neurologist, he immediately took me off my 10-year narcotic and Fiorocet binge. This resulted in going through rough withdraw symptoms. I was having bad tremors and convulsions to where it scared my boyfriend because I was doing it my
sleep. I also could not eat, and I had constant diarrhea. So, I lost a lot of weight. It didn’t help that I was on Topamax. I had every side effect of the
medicine. I had tingling and numbness in my legs. I was constantly nauseated. I didn’t have an appetite for anything. I was always tired. I was living in hell for almost a year, and it didn’t even help my migraines to decrease in intensity or frequency.

I was determined to find relief because I wanted to work and have a life. Since I could not work because of the constant pain, I went to school. Despite the excruciating, annoying, and irritating pain, I have managed to obtain an Associate, a Bachelor, a Master, and a Doctorate degree. Who
would have thought a person living with chronic migraine could be successful with so much schooling?!?! I am so educated but lack work experience because of this complex headache disorder. I am at a time of my life that the migraine pain is not running the show of my life. It took a lot of research and courage to find help and support so I could fight the pain and find some type of relief.

The period of May 2015-January 2017 is when I was in a constant migraine that didn’t go away. During this period, I went through a separation and was left to raise a teenager and a toddler by myself. I had people at the preschool my toddler attended asking if I had any people to help me.
I hate it when people assume that there is magical help for people who have family several hundred miles away. There are some people who have no one and I lived my life like that. I don’t call for help unless its life or death. It’s hard when you live through head pain, but you do what
you gotta do. However, I found a support group of others who dealt with migraine, and this is when my journey started with finding relief.

This support group was a patient group that was part of the American Headache Society. They had conferences that provided resources and education for migraine. I was told that marijuana would help with the pain.
So, I tried it and it worked but it didn’t break the pain long enough for me. It did take the edge off, and I found out that I would need to be constantly high to get rid of the pain. I can’t live life constantly high!! I needed to be a parent and finish my dissertation at that time. Therefore, I used the resources from this group to find a doctor that would do Botox. I tried the
Botox for six months and the doctor gave up on me! What a load of malarkey!!!

Then I had to go back to the drawing board and find another doctor, but this time it would need to be a top headache specialist. I was so happy when I found the headache specialist. He was a Godsend! He knocked out my ongoing more than a year long migraine!!! It was the magical infusion of dihydroergotamine (DHE) with other drugs that included steroids,
anti-nausea, Benadryl, magnesium, and an anti-inflammatory . Never heard of it until I met him. This infusion is the only thing that breaks my migraines and gives me days of relief. However, I also need another injection to make the migraines manageable. Besides doing the DHE infusions
every 6 months-1 year, I also need a Sphenopalatine Ganglion (SPG) injection shot inside the back of my nose. The SPG shot is nerve block shot that aims for the trigeminal nerve. Since getting these injections and infusions, I can live life again. I have joined advocacy groups and
I am on a journey to find a professional job in research so I can use my education for good.

Hopefully I will be on a team who answer questions about why head pain exists and why others experience it differently. I want to be part of the movement to lessen the stigma and educate others that migraine is more than a headache, it’s an irritation of the soul and body.

If you would like to share your story, and be featured in our blog, please email it to kristen@cmaware.org