“Restless” Legs
Original Post: For the last five years I have fought Restless Leg Syndrome. They started me on Gabapentin. It has not touched it and in fact it has gotten so much worse.
Dr. Bruno’s Response: When polio survivors talk about having “restless legs” you have to make sure that they’re talking about the right thing. There are two separate sleep disorders that are confused, not only by patients, but by sleep doctors themselves: “Restless leg syndrome“ (RLS) and “Periodic leg movements in sleep” (PLMS)…
• Restless leg syndrome is when people have creeping sensations in their legs and feel that they must
move their legs.
• Periodic leg movements in sleep are when the leg muscles twitch and jerk on their own.
In the Index of the Encyclopedia of Polio and PPS you can find our articles on periodic leg movements in sleep, which we call Generalized Random Myoclonus, because polio survivors muscles can twitch and jump, not just in the legs, but in the arms, hands, chest and abdomen. I recommend: Abnormal Movements in Sleep as Post-Polio Sequelae
We found that the treatment for muscles twitching and jumping is a low dose of alprazolam 30 minutes before sleep. And in spite of what your doctor might say, we found that alprazolam is not addictive when taken this way, because its anti-anxiety effect occurs when you're asleep! Polio survivors do not need more Xanax after an effective dose is found. Post-Polio Institute patients have been on the same Xanax dose to treat muscle twitching for decades!
Sleep doctors will often try to give you dopamine stimulating drugs like Mirapex for both PLMS and restless legs. We do not recommend that Polio survivors should take anything that either stimulates or blocks dopamine receptors in the brain because the dopamine system was severely damaged by the poliovirus and dopamine receptors on neurons either multiply and turn up their sensitivity, or hide and turn down their sensitivity, depending on the medication that is given. These drugs designed for restless legs can cause marked fatigue and a permanent Parkinson's-like tremor.
Talk to your doctor or sleep specialist about the difference between RLS and PLMS and how to treat these conditions in a polio survivor.
Bottom line: Polio survivors should never mess with dopamine in the brain!