Q&A 89: Nocturnal spasms

How have you sorted out early morning spasms, most likely due to the wearing off of baclofen and gabapentin?

Case study

I am 54 years old, diagnosed with PPMS about 25 years ago. I have been having worsening spasms in the middle of the night or very early morning. I have had the occasional leg cramp in my left shin that would ease when I pushed back my toes. Now I am getting these multiple times a night and not just in my left leg but also in my right leg, arm, hand, and even jaw.

I am on ocrelizumab (Ocrevus) and take gabapentin and baclofen to manage the symptoms. I took tizanidine years ago, and it didn’t help. I remain active, going to the gym, walking, riding an e-bike, or doing yard work daily.

I am well informed about options, including a baclofen pump, Botox (I am hesitant about both), and CBD. What would you recommend? Are there options I might not be aware of? I work full time, so extra sedation is a concern, too. But I dread sleeping now, so I hope there’s a solution!

NOTE: General Substack newsletters and the microsite are free; only Q&A sessions are restricted to paying subscribers. I can't run and maintain the MS-Selfie microsite, so I must pay people to help me do the work. If people want to ask medical questions unrelated to the Newsletters or Podcasts, they either need to become paying subscribers or email (ms-selfie@giovannoni.net) to request a complimentary subscription.

Prof G’s answers

This is when a physical examination is essential. ‘Common things occur commonly,’ so these spasms are likely clonic spasms associated with spasticity. However, the fact that they involve the jaw is odd and, in my experience, rare.