Ulnar neuropathy + focal dystonia — right hand periodic fingers cramp

Welcome @handcramp, I don't have the hand cramping but do have hand/arm numbness if like you mentioned I have my arm in an awkward position while laying down. While you wait for members with experience to respond, I did a search of Connect that lists the discussions and posts by members that you might find helpful:

-- "ulnar neuropathy" - https://connect.mayoclinic.org/search/
-- "focal dystonia" - https://connect.mayoclinic.org/search/

I did find some research on the connection that may be helpful:
-- Does ulnar neuropathy predispose to focal dystonia?
https://pubmed.ncbi.nlm.nih.gov/7753123/
-- Hand Dystonia: https://dystonia-foundation.org/what-is-dystonia/types-dystonia/hand-dystonia/

The article on hand dystonia does mention the possible treatment with guided injections into the selected muscles in the forearm may be helpful. Is the doctor waiting to see how well the gabapentin works before trying the Botox?

Yes long time ago. Actually had 2 surgeries on my right Ulnar Nerve. My EMG test came back normal. However at Mayo Clinic, it was supposed to be a short surgery. I was in surgery for 8 hours. My Ulna Nerve had to be repaired and moved. They think because I have a medical background I know what nerves and muscles do. So once again, it was bad. Also surgery number 2 was same thing. I believe I have it again on my left arm. Pins and needles on my left ring finger and pinky. Wishing you the best.

I have weird cramping like you described as well. Mine is fingers and toes. Its crazy. Neurologist said its dystonia and is referring me to a movement disorder specialist. Driving triggers it in my hands and well as threading bolts and gripping things. Toes do it after I take weight off. Its horrible

Have them screen for amyloid.

I’ve also wondered whether there is a broader cramp tendency underneath all of this. Long before the hand problem became my main issue, I used to get absolutely excruciating calf cramps — classic “Charley horses” — where the calf would lock up for several minutes. (Side note: that was when I discovered Amish Muscle Tonic. Oddly enough, taking it at the onset sometimes seemed to give me almost immediate relief). Those calf cramps have greatly subsided over time, but the right-hand cramping has become the dominant problem.

Alcohol is now one of my clearest triggers. If I have a weekend of moderate-plus drinking, I can almost count on getting the hand cramp regardless of what I’m doing. It no longer has to be driving — it can wake me in the middle of the night or start during something as simple as reaching into my pocket. Because the relationship became so obvious, I’ve stopped drinking completely.

Gabapentin initially looked promising, but over time I became convinced it wasn’t really preventing the episodes. My neurologist has now stopped it and put me on baclofen every night. She prescribed 5 mg but told me to split the tablet and start at 2.5 mg because I am very sensitive to the sedation. I’m still not sure it is helping. If I drive for about an hour, I still begin getting that uneasy warning feeling where grabbing something makes the fingers feel as though they are ready to cramp.

Interestingly, if I take baclofen right at the beginning of that warning stage, it does seem capable of preventing the full cramp from developing. The downside is that the medication can leave me feeling completely exhausted afterward.

This condition has also played tricks with me psychologically. I’ll have a day when the hand feels almost completely normal and think, “Maybe this thing is finally going away,” only to have it raise its head again the next day.

We’re now moving toward Botox. My neurologist has emphasized that the first injections will be somewhat of a trial because the dose and muscles have to be worked out. She is not promising that Botox will eliminate the cramping itself, but she seemed reasonably confident that it can reduce the force of the contraction and, most importantly to me, prevent or greatly reduce the terrifying sideways finger bending that feels as though someone is trying to break my fingers.

All of my bloodwork, including repeated electrolyte/chemistry testing, has been normal. I also have a persistent cold sensation in the affected hand and previously had noticeably lower pulse-ox readings on that hand, so I recently had a vascular blood-flow study of the right arm/hand to make sure there isn’t an arterial or positional circulation issue contributing to the problem. I’m waiting for those results now.

And yes — I also occasionally get toe curling, although thankfully it is much less frequent and much easier to resolve than what happens in my hand.

@seniormed Thanks — I’ll ask my neurologist about amyloid screening. From what I’ve read, though, my pattern seems a little different from the more typical amyloid neuropathy picture. Mine is very episodic and trigger-driven: the fingers can suddenly curl and twist painfully for several minutes and then release, often after driving, alcohol, fatigue, or even reaching into a pocket. My understanding is that amyloid neuropathy is usually more progressive and persistent rather than switching on and off like this. Still, since I do have bilateral carpal tunnel/ulnar neuropathy, it seems reasonable to at least ask whether screening is warranted.