I’ve never felt more like a guinea pig than I did when I had my occipital nerve stimulator implanted almost 10 years ago. Read about the experience, and my thoughts about it all these years later, in Migraine & “The Box” — Feeling Like a Guinea Pig With an Occipital Nerve Stimulator on Migraine.com.
The post is in response to the Migraine & Headache Awareness Month Blog Challenge question from June 12, What situation in your migraine/headache disorders treatment has made you feel most like a guinea pig or lab rat?
I forget what they’re called, but the shots in the back of the neck/spine to block a nerve. Weird, unpleasant, and not effective for me.
But hey! I get to use it on the “hey have you tried..” people and they get all “daaamn”.
Thanks for sharing!
I am a guinea pig. There are many aspects of “treating” chronic migraine that make one feel like a guinea pig. Here is the one way that jumps out for me.
I left my former neurologist about one year ago. The reason I left is that his so-called solution was to prescribe lots of different medications (concurrently) at progressively higher and higher doses.
When we would reach the maximum dose on one medication and, as I always did, I reported no positive changes in the migraines he would drop that medication and “spin the big wheel of meds” to select its replacement. Of course there was more to his selection than that, but honestly it was clear that there was little or no hard evidence or clear data involved in his selection. It was always a line like, “Well this medication works for some people with migraine. We don’t know why, but let’s try it with you.” Worse yet was the line, “Maybe I didn’t have you on a high enough dose when we tried this medication last year.”
I did this with him for probably three or four years. we journeyed through every medication he could think of with little relief. In the end he was circling back to lots of the medications we had tried previously. So I heard more of the “let’s try it again” rather than the “I don’t know why this might work, if it works at all… let’s try it”.
One of the most common side effects seemed to be excessive tiredness. I got to a point at the end where I never felt awake. I refer to this as my Zombie Days. I found myself wandering through my so called life in a constant daze. I simply could not wake up. I had a PhD psychologist at this clinic comment that he had not seen any of the other patients on so many medications at such high doses! I really had been zombified!!!
By this time I certinaly felt like I was being experimented on, tested, ran through a maze (with no cheese at the end)…I think the neurologist was nearly as frustrated as I was with all of these attempts and failures.
So, I broke up with him! He got to keep all the medications and I got my consciousness back. Now I am working with another neurologist (30 minutes from my home rather than three and a half hours). Medications with this neurologist are minimal. I am on two preventatives and have a few abortives in my arsenal. I no longer feel like I am a zombie (except during the worst migraines). At least it is not constant like it was when I would wake up and take literally a handful of medications.
I am still a lab rat. This time the grand experiment is Botox. At least there is some pretty decent evidence for the use of Botox in the treatment of chronic migraine. Still, though, it is an experiment.
Until someone can decipher the “why” and “how” of migraine any and all treatments really are experiments. We are throwing things at the symptoms with no idea of the cause, the root of the problem.
Ok, back to running in my hamster wheel!