The Monsters in My Head
Posted by Debby M—August 21st, 2013

Thank you for the welcome! I haven’t been on any of the headache forums for quite a while. I was one of the hosts on the old about.com forum quite a few years back. In a nutshell – I have suffered from migraine from the age of approximately 9 years old (I’m now 55).

Back “in the day” we weren’t so fortunate to have the variety of treatments available to us that we have now. I have been treated for my classic migraine with aura by a variety of practitioners including nurse practitioners, general practitioner, and a neurologist; been given a variety of treatments from sinus pills to narcotics. I was fortunate to participate in the tail end of the Imitrex clinical trials and found it to be a life changer for many years until developing throat swelling reactions to the pill form around 2000 – my old doctor put all triptans on my allergy list a couple years after that.

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I’ve been on Topamax for the past 6 or 7 years with very good success at suppressing the pain component but have developed some less than pleasant side effects including short-term memory problems, aphasia, buzzing/tingling sensation in my feet and hands, hair thinning, and heartburn. I was without insurance for the past 4 years but fortunately was on a patient assistance program that covered the cost of the script; however, I was getting my health care from a community health center that didn’t give me any continuity of care – the providers changed frequently and were mostly nurse practitioners who didn’t have a lot of knowledge or experience in migraine treatment.

Thankfully due to my recent remarriage I now have insurance again and am able to go back to my regular physician (YAY!). I am gathering information to talk with him about possibly replacing the Topamax with another preventive medication. A trial earlier this year of weaning off the Topamax was not successful – I forgot how bad the monster in my head was, and was hit with an episode that knocked me for a loop for an entire weekend. So now we will look at which treatment has the least amount of side effect while still offering optimal control; I really do NOT want to suffer again with these monsters that have stolen so much of my life……

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