Not a day without a headache

Last updated: March 2013

My story sounds like many others that I have read. I have been suffering with severe migraines since I was a child. I am in my late 40's and when I began experiencing headaches I was not sure what it was or if it had a name. I could not focus, I saw flashing lights and within 1/2 hour I was vomiting severely and the pain on the right side of my head was excruitiating. I would run home to go into a dark, cold room and lay with an icebag. Before I know it it was the next morning. This went on for years until my parents brought me to my first of many neurologists. Many MRI and Cat Scans later, they found nothing wrong and I was placed on medication.

As I went into my early teens and adulthood, the headaches would get more frequent and more intense. Always on my right side and always debilitating. I would miss family events, holidays and many, many days of school.

Then one day I was placed on Topamax. Within 2 weeks of taking it the headaches disappeared. I was elated. The medicine was a miracle, until the side effects started to happen. I began losing weight at an alarming speed. I remember looking in the mirror and not recognizing myself. I was actually fitting into my teenage daughter’s jeans, but I figured if this was the only side effect I would live with it. Then my family started to notice that I would forget things and start to mumble and not make sense. I was confused all the time. They began to get worried. Apparently this is another side effect of the medicine. I began to have problems with my eyes, I started suffering from double vision and I would get tingling in my hands and feet. I tried to keep a lot of this secret from my family, for awhile, because through all the side effects, I still did not get a headache. So for anyone who suffers with migraines, you weigh out the good/bad and that’s how you determine if you are making the right choice. I figured I could live with all of the side effects, if it meant never having another headache. Eventually the bad was getting really bad, and I had to be taken off the medication. After a few weeks, the migraines came back.

Fast forward to 2 years ago. Still experiencing very bad migraines, and depending on my Maxalt and many vitamins, including, Migralief, Vitamin B, Magnesium, CoQ-10, Vitamin D, Melatonin and some others, I began taking Excedrin like they were candy. Nothing seemed to work and I had some type of headache every day, all day.

In November of 2010, I woke up one morning and could not feel anything on my right side and my neck was in so much pain I was unable to move in any direction. I was relying on Vicadin and Percocet to get through the day, and thankfully had a wonderful job that understood. I had spinal shots, physical therapy and so many tests I lost count. After months of suffering, it was determined that I needed Spinal Surgery to fuse the discs 4, 5, 6. In March of 2011 I had spinal surgery, in which they placed a large plate and 8 screws, and finally the pain in my neck was gone. After the surgery the headaches did not come as frequently and were not so intense. I was good for a few months.

Nothing is that easy. In early 2012, I began getting a headache that was so severe on my right side that it would cause dizziness and the pain was so bad that I would pull out my hair and scream in pain. Nothing seemed to work. The "episode" would come in waves, lasting 10 minutes and going on for 2 days.

My neurologist sent me to the Headache Institute and it was determined that I suffered from a very rare headache (Hermacrania Continua) and needed to be placed on Indomethacin. When I went to get this medicine from my pharmacy, the pharmacist informed me that this medication was very rarely given due to the extreme side effects and asked if I really wanted to be placed on it. After many conversations with doctors and my very understanding family, I agreed to be placed on the Indomethacin. So now, many, many months later, I am still on Indomethacin, along with Verapamil and Gabapentin for the "episodes" and for maintenance of migraines (which still come very frequently).

Today I take each day as a new adventure. Some days are better than others. Some headaches are more tolerable than others and I am thankful for my wonderful family who understand that sometimes I am not at my best, due to the migraine, but they get me through it and hopefully one day someone will find that miracle cure that we are all looking for.


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