My story started about 9 years ago when I started getting this pain on one side of my head. At first I thought it was some kind of sinus infection and went through all kinds of tests to find out that it wasn't the case. The pain was very intense and affected exactly one whole side of my head from top right down through my jaw. I couldn't lie down as this made the pain more intense and I could not sit still or concentrate on anything for any period of time. This pain would last for several days then slowly subside until I could function with the pain. Initially I would get this several times a year usually during the spring and fall and in some cases the severe pain would last several days or more than a week.
Over the last 9 years the episodes have been fewer but when I do get them they are generally worse as far as pain and length of the episode. Two years ago the pain changed sides of my head. Last year was my worst episode I can remember and lasted for almost a month. There were some days where the pain was bearable and I could function but more than half of them I could not work or sleep. I would sit in my chair at night until I slept out of sheer exhaustion which would last only a few hours until the pain returned. I have not been able to find any medication that can take the pain away. I have tried keeping journals myself but nothing has led me to a trigger for the episodes. I have noticed some dizziness and disorientation before some attacks but it is so mild I can't be sure that it is signaling the onset of an episode. This year I have not had a severe episode....so far thankfully....but I am always waiting for it to start.
The pain itself is one of the most intense forms of pain I have ever experienced in my life and have reduced me to tears. At the time of a severe episode I would trade anything I own for any relief. I have spent entire days and nights pacing the floor hoping it would stop!
I have tried preventative medicine like Imitrex but since I have very little or no warning of each episode this is basically useless. Once it starts there is no stopping it.
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