Living in Darkness

I have suffered with migraines since giving birth to my daughter in 1988. Over the years, I have received treatment from numerous doctors. Preventative medication has helped over the years to lessen the amount of migraines. In 2006 my migraines worsened again and I was referred to the Chief Neurosurgeon at Bingham and Women's hospital in Boston, MA. He identified I had Chiari Malformation and preformed a brain decompression surgery. This with another type of preventative medicine helped manage the number of intense migraines so l could continue to live a somewhat normal life.

In June of 2013, the number and intensity of my migraines increased, I was in constant pain every day, being unable to concentrate, work and get out of bed. I tried everything to break the migraine but everything I tried was unsuccessful. I contacted my Primary Doctor who started me on new medication and referred me to a new Neurologist and a Pain Clinic. In July, 2013 a week after trying two new medications, I started stuttering and haven't stopped stuttering since. I had never stuttered before in my life. Now it is difficult to get my words out and get out of my mouth what my mind is thinking.

I have Migraines more days than not now. I live with constant pressure in my head and a dull throbbing pain above my right eye. The smallest thing makes my migraines go from a pain level of 6/7 to 10. Due to this, I try and avoid all the triggers that make my migraine worse. Avoiding being around anyone wearing perfume or strong smells, wearing sunglasses wherever I go and staying in the darkness of my room most of the time with ice packs on my head. Why? Because, this is the only relief I can get.

I have worked since I was 15 and had a very successful career until last year when it feels like my life was taken over due to being in pain. This is not the life I want or would wish on anyone.

Finding the cause and way to treat Migraines seems to be a guessing game for doctors and we are ginny pigs. I have tried everything, recently Botox that wasn't successful. After a while the doctors don't want to give you anything for the pain because they don't want you to become addicted and cause rebound headaches. The doctors now are now just trying to help me cope with being in constant pain. I was recently told to just take Advil and approved for medical marijuana. Although Advil is eating my stomach away, I was told that it is better than taking something that can be addictive. Out of desperation for pain relief I was willing to go against everything I believed and taught my children and try medical marijuana. Although it does seem to relieve some of the pressure in my head, it is all trial and error. Medical marijuana is not covered by insurance and not monitored by a doctor so your left to figure it out on your own, what to take and how much. And although this does provide me with some relief, I only use it as a last resort to avoid going to the ER. For something that effects so many, why is there not more research and treatment with results? I have stopped getting my hopes up that a new treatment will work because the let down is unbearable. Now I can only pray that someday I will stop living in darkness and enjoy the sunshine once again.

Thank you for letting me share my story and for providing a place for all those that suffer with this disease the knowledge that we are not suffering alone.

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