Back on Baclofen

Dystonia has been slowly worsening since I gave birth to my son one and a half years ago. It was much improved during my pregnancy and I believe it has just been getting back to the same state as before I got pregnant. Needless to say, since I haven't been on medications for over two years my symptoms have been gradually becoming intolerable. The pulling on my neck that tilts my head to the right, head tremors, spasms in my lower back causing sciatic nerve pain, curling toes on my left foot, twisting of my left hip and cramps in my arms and hands, all my daily reminders of dystonia have been getting worse. I went back to my primary care physician and received a prescription for Baclofen.

Baclofen is a GABAB receptor agonist that works at the spinal level and crosses the blood brain barrier to affect the brain. Dystonia results from dysfunction in circuitry of the basal ganglia, a group of sub-cortical brain structures that are responsible for regulating motor control. The basal ganglia are also regulate cognitive, emotional and motivational information and integrate these processes with motor output to produce appropriate actions. Many of the nerve projections from various structures of basal ganglia use gamma-aminobutyric acid (GABA), the major inhibitory neurotransmitter. http://en.wikipedia.org/wiki/GABA Baclofen acts like GABA, increasing activity of the GABAB receptor to enhance inhibitory activity on target structures throughout the brain. It is one of the only drugs that I have taken for dystonia that significantly improves my symptoms without causing intolerable side effects.

So, I am back on the Baclofen and hoping that I can tolerate it as I have in the past. I will have to increase the dose over time to continue getting effective reduction in dystonic symptoms, but since I have been off of it for so long, I think it will take a while to build up tolerance again. Before I got pregnant I was taking 80mg/day which is a pretty high doseage. Right now I am starting at 10mg/day and will work up to 30mg/day over a month or so and then maintain that as long as I can before I build up a tolerance. I hate taking medications as I fear that they are damaging my brain in some way, just as the neuroleptics caused my dystonia. Baclofen also has some cognitive side effects and causes fatigue which makes graduate school a bit more challenging than it already is. However, when you live every day with dystonia, you know that it can make life difficult to live at all. Medications are a compromise I have to choose in order to live a functional, productive life with dystonia. These are not easy choices to make, but hopefully will help alleviate some suffering so that I can better contribute what I have to offer to the world.

The picture is of my son (16 months old) contemplating the beauty and wonder of jellyfish at the Georgia Aquarium in Atlanta http://www.georgiaaquarium.org/ The photo was taken by my husband while I was at the Society for Neuroscience (SFN) annual meeting.