The Monsters in My Head
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.
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......
Have you checked out the new Community Hub yet?