It’s been a lifetime and a learning curve

I remember complaining to my father as a young child (4-6) that my brain hurt. I don’t recall any type of headache again until around age 16 when I was put on birth control pills. These were relatively short-lived. My next recollection was at age 23 when headaches were coming on fast and furious. Migraine and/or cluster headaches were first suggested until I saw a neurologist. At that time, I asked what caused them and he was unable to tell me, but it was suggested they were vascular. I tried most everything he attempted to give me, everything had horrendous side-effects. I saw him from about 1981-1990. Somehow they settled down for a bit. Around 1993-94 I started having difficulty again and recently released was Imitrex. It did give relief, but the side-effects again were nasty. Over the years as a new triptan was made available I tried it and settled on Relpax.

Things started becoming far more difficult in 2007. I was still taking Relpax and had also made several trips to ERs when they became unbearable. In April ’08 I had possibly the worst migraine of my life… but something was so different. I had lost words, I wasn’t thinking clearly… I requested seeing a neurologist again. After an MRI, numerous blood tests (including genetic tests), a TEE, and removal from all triptans. It was determined that I had experienced a TIA (trans-ischemic accident). The memory was also becoming an issues. My primary source of relief came from vicodin. The genetic tests initally showed one nasty, but I wanted to understand more so sought out a Hematologist who did further testing to find 2 more genes that were possibly the culprits. Perhaps still imperfect, I finally had a cause. It also explained some of the other “connected” illnesses that run in the family. So far I have experienced one more TIA and have been diagnosed with mild-cognitive impairment (pre-dementia).

Fortunately there are medications that can be used to keep them all at bay. They also seem to affect the severity of the migraines. Now, I still take the vicodin, but when they become intractable, I do go for infusion therapy. The sooner I get the infusion the more successful the infusion and the medications that need to be used. Preferrably I will choose magnesium over methylprednisone. One has no side effects for me while the other is less desireable. I have also found myself in a clinical trial (not meds).

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