Sharing the lessons along the way…

The Clonus Puzzle Piece


clonus puzzle

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.

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Comments on: "The Clonus Puzzle Piece" (13)

  1. I did check with my physiatrist regarding if Phenol would work with jaw lock. He commented, “it may or may not work. Ask her to mention this to her physiatrist to see if it’s worth a try.” Hope this is an option for you!

  2. Tough one. Depending which location is providing the most clonus, have you ever considered Phenol injection?

    • Hi Catherine,
      I am not sure I know what phenol is, but would love to hear more. I am most concerned about the jaw clonus quite honestly, but mostly because this is something that is more noticeable since the pump was removed. I had some botox injections years ago in my legs before my first pump.

  3. Hi,
    Yup, that’s jaw clonus! It also happens when I chew tough foods. My ankle clonus has been really acting up lately. I completely agree with you about Valium! I take 5mg (half a tablet) at night and it really works as a muscle relaxer and aids in sleep. I take Detrol for bladder spasms and it works wonders! I
    I have had PLS for 7 years and I only go to my internist. He refills my Valium.
    Interesting, your experience with the Baclofen Pump. I really have wanted to have one placed, I’m an excellent candidate, but I changed my mind after reading your experience! Im going to look into Trileptal (sp?)
    Thank you! 😉

    • Thank you for sharing all of this Madeleine! I actually had a great first pump experience, but a horrible second one. They were different manufacterers and it made a huge difference. I still recommend them, but Codman not Medtronic. The intrathecal baclofen actually made my bladder not spasm enough and since the pump was removed, it seems to be doing ok. I do a quarter of that 5mg valium during the waking hours for the clonus when it gets really bad. Another PLS’er was posting to my facebook about low dose naltrexone. She swears by it for clonus. The research isn’t great for it though.
      Hugs!!

  4. I too have clonus in my ankles and jaw. I have tried Baclofen three different times and the bad outweigh the good eg. bladder issues, woozy, sleepy. I also tried Tizanidine with no luck. What did your doctor prescribe?

    • Hi Madeleine,
      I am sorry you have it too, but interesting you also have it in your jaw. I didn’t realize that was what was happening in my jaw, but noticed my mouth shaking one day while at a dentist appointment and then afterwards. I am going to continue with 6mg of tizanidine at night and start adding trileptal (sp) as I phase out neurontin. I also take some low doses of diazepam, which honestly works better than anything else for the clonus. The problem is that it is a controlled substance and it requires an appointment to get refills. Since I only see my neuro every 4-6 months, I run out.

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