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What Helps Your Symptoms?
kmaze001 posted:
I thought it might be good to share anything that we've done that helps with the symptoms, either to reduce pain or reduce the annoying sensations. Here's what I've tried, and the results I've gotten:

  • Ice water: Felt awful, did nothing.
  • Heat: Feels great while it's on.
  • Toe spreaders: I have all sorts, from socks to yoga sandals. They do a pretty good job of reducing the movements, at least I can't feel them as much. I use the socks when I sleep.
  • Special prescription cream from a compounding pharmacy: Very little (but some) pain reduction.
  • Neurontin: Seems to help, especially during the night. I take 600 mg before going to bed.
  • Acupuncture: For two days after the first visit, I had very few movements, but after that it was back to "normal". Subsequent treatments didn't help.
  • Massage: Feels great!!!
  • Mechanical foot massager: Feels good and distracts from the movements
Has anyone gotten botox shots?
MoreMountains responded:
Where do you get the toe spreader socks? Thanks.
kmaze001 replied to MoreMountains's response:
I bought them online, but I can't remember exactly where. I'm pretty sure that I got them from a yoga store. Try googling "yoga socks" or "yoga toe socks" and you should be able to find them or something similar. Good luck!
twitchytoes responded:
Definitely the toe spreaders and massage!
I have found too many undesirable side effects from drugs, so haven't used any in over 6 years.

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Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.