CRPS II and Movement Disorder
 

I have been having tremors like crazy lately (movement disorder). My doc increased my gabapentin to the max dose a couple of months ago. That really helped to calm everything down. Now here I am a couple of months down the road and it’s not working as well as it did upon the increased dose, and bummer, I’m at the max level of 1200mg 3x’s /day, or at least the doc said it was the max dose when I mentioned this to him.

Over the last couple of weeks I’m having tons of spasms and tremors, inside and out. Meaning that I’ve had spasms in my lower abdomen (internal organs), as well as all of my extremities too. I have also had a few instances of not being able to swallow properly and have had back to back choking episodes.

It got so out of hand today that it was affecting my tongue too (not the first time this has happened). My tongue starts to feel fat and my speech slurred and words hard to form. Let me be clear, I’m not on any other med than gabapentin when this was happening. I take other daily meds, but I take them at bedtime. After another dose of gaba and some much needed rest, I can speak normally again and my tongue seems back to normal.

The spasms have been daily and the way my muscles will contract is out of hand. I mean the contraction grabs a hold and I start an aggressive action of trying to release it by rubbing, whether it be my foot, or calf or thigh, etc. I also have colorful language while this is happening. It’s really, really painful!

As I type this I am having a twitch in my eyebrow area that is maddening.

Anywho, so I am concerned that I am at max dose of Gabapentin, which by the way is causing much grief with my stomach at this level :(. Baclofen was an awful experience for me. So what’s left to try? I do take a daily dose of Soma at night. Yes, I am aware of the risks of this drug and take it anyway because it seems to help, but my symptoms are getting worse. My doc wants me to see a speech therapist. Now call me blonde but I don’t get how that will help with my tongue when it has that fat feeling randomly. And the choking has the same randomness as well. If someone can set me straight, perhaps I will be more eager to spend money on this.

Thanks in advance for any info or advice!

I take my soma 4x a day. I also have myoclonics, and I take depakote for that and that has really helped with my tremors.

As for the speech, it sounds like your dr is thinking its nuero/oral related. But speech will probley recomend a swallow study to make sure you can swallow your food ok and then they can work on oral motor skills. But I dont believe thats your issue since you get the feeling with your tounge, so thats very odd of why he would want that. So I honestly dont see how a speech therapist can help in that regard. But thats all that speech therapist can do.

I am afraid I don't have much knowledge of the movement disorder issue other than having minor twitches and spasms myself. That said I had the speech and tongue issues as a side effect of both gabapentin and to a lesser degree pregabalin. Gabapentin had a far better side effect profile for me in all other ways though. I often felt fat-tongued and very self conscious about my speech. The docs said it was one of the most common side effects. xx

I had some slurred speech and the fat tongue feeling on Gabapentin too. Now I'm back on a very low dose of Lyrica instead I'm not getting it at all. My pain doc described Gabapentin as 'nasty powerful stuff' :rolleyes: I also had a lot of gastric problems with it and personally would never go back there again. I know it works well for some people, but sadly I'm not one of them!

I really hope your symptoms ease soon, sounds horrible to have to deal with. Take care and good luck.

Bram.

have you tried baclofen 10mg for tremors?