Today, I had my neurologist explain clonus to me. I have researched it, but have never found a way to rehab it or manage it that didn’t involve medications. To review, clonus is an involuntary jerking-like action that happens with the extension or flexion of muscle groups. Mine happens at the extension of my ankle, knee, hip, shoulders and apparently some in my jaw.
He explained it like this:
The spinal cord is sending messages to the body all the time. The brain’s job is to inhibit some of those messages. When there is a problem with the brain or spinal cord, those messages aren’t inhibited. This results in over excitation of the reflexes and other muscles that is called clonus (or myoclonus).
It seems my time with the baclofen pump served to erase my memory of the nuisance that is clonus. So as not to belabor that minor flaw in my master plan, I will move on to the answer to my follow up question to my neurologist, “How can we fix it?”
It can’t be fixed. Medications can help to inhibit some of what the brain is not inhibiting. The intrathecal baclofen pump did that very well. Oral baclofen didn’t do such a great job in the past, which is why I opted to have the pump implanted to begin with.
Even the increase in tizanidine (a medication similar to baclofen) I take at night isn’t doing much to help right now. I am still trying to not take oral baclofen. The baclofen fog is my last resort, but I also do not want to agitate my bladder issues again.
So we are switching the medication I take for the burning torso (nerve pain) to another medication that may help both the nerve pain and the clonus. I will have to get used to taking this medication (that is sedating) during the day while weaning off the other medication.
My rehab efforts have been thwarted because stretching often triggers so much clonus that I can barely stand. I didn’t have this problem as we were weaning me off the intrathecal baclofen because there was still baclofen. Since then, the clonus has gotten worse without medications to manage it.
My hope here is to give us all a better understanding of clonus. Really, what I am hoping is that I can wrap my head around it enough to better figure out ways to work around it.