Chronic Migraine Awareness

Written by Ronetta Stokes for Chronic Migraine Awareness, Inc.

My migraine journey began when I was in high school. I would occasionally get headaches (were these migraine attacks). Nothing that I couldn’t handle without medication. Once high school ended I went on to college. I had a few more headaches; nothing major. I was able to work and attend classes on a regular basis. Once I became pregnant in 1996 with my daughter and the headaches stopped, I was laughing, joking, smiling – I felt like myself again.

 In 2002 I saw a neurologist and was started on a migraine preventative therapy.  In 2003 I became pregnant with my son and stopped all medications, and in 2005 they started again but more aggressive and intense. I was referred to a neurologist again. The pain was three to four times a week. Location always varied; sometimes in the front of my head, others occipital, or temples. They felt like sharp, throbbing, achiness with maximum intensity and would include nausea, dizziness, and sensitivity to light. The doctors felt a lot contributed to a stressful job, moving into a new house, and returning to school. 

When an attack would occur I would take Excedrin migraine which slightly lessened the pain but didn’t stop it. Topamax (my migraine prevention medication) was increased.  I had no appetite and lost 10 pounds. I was forcing myself to eat two meals a day, so my dose was lower from 150mg to 100mg.  My doctor introduced Nortriptyline, 50mg a day.  Migraine disease was winning and the doctor was increasing other medications into the mix. I had many scans, tests, etc. Everything was normal. 

I was referred to another doctor who tried Botox; twice with no change. I was placed on another preventative and abortive medication. The years went on and the pain persisted. There were times I would just go to my room and lay down missing family events, birthdays, and work. This was no way to live my life or any life. 

I was on any and every tricyclic and antidepressant medication used for migraine with no relief. I learned to deal with it. I was getting good at pretending I was ok so I didn’t have to hear ‘oh you have a headache again’. Or get a look like ‘here we go again she doesn’t feel good’. I pushed through work days, came home and crashed. I was doing this for years to no avail. Migraine had taken over my brain but I was still pushing forward to be a mom, wife, student, and coworker the best I could.

I started seeing a neurologist in another town. When I walked into the office the lights were very dim. Not like my past doctor office where the music was blaring, the lights were too bright, and staff was much too loud. This place felt like home; the staff was amazing, caring and showed concern. I met my neurologist and felt she truly understood what was happening. 

I went on Facebook and looked for others who were dealing with the same issues. I found so many support groups. The one that stood out the most was Chronic Migraine Awareness. Everyone was thoughtful, caring, and had been in my shoes. This group encouraged me to step out of my shell and speak up to end the migraine stigma. I fundraised for Miles for Migraine, which was so exciting and I was very proud of myself for stepping up and doing something! Next was National Migraine and Headache Awareness Month, I spoke about it with the CEO of my company, coworkers, and the mayor of my town. The mayor gave me a proclamation and declared June 2020 Migraine Awareness Month!! That meant the world to me. I am able to show and tell others the truth about migraine and prove that it may be an invisible neurological disease but it’s real. There are real people living with it daily. I am not a migraine person. I am a person who has migraine.