Restless Legs
Original Post: Does anyone else suffer from Restless legs Syndrome at night or when resting? Is the RLS more severe in polio survivors or are medications for RLS different for those who do not have PPS?
Dr. Bruno’s Response: Let me start with the confusion among polio survivors and doctors.
Restless Legs Syndrome (RLS) is the overwhelming urge to move your legs when you're trying to sleep.
RLS is often confused with Nocturnal Myoclonus (also called periodic leg movements in sleep, PLMS) where your muscles twitch and jump on their own when you're trying to sleep.
We have done three studies of sleep problems in polio survivors. In the 1985 National Post-Polio Survey, 63% of polio survivors reported that their muscles twitch and jump during sleep and half of those said that their sleep was disturbed by twitching.
In 1995 a group of our post-polio patients underwent sleep studies. Forty percent of the patients had periodic leg movements in sleep (PLMS), the common form of twitching where only leg muscles move. Almost 30% had what we dubbed Generalized Random Myoclonus (GRM), where not just the legs but muscles all over the body, including toes, arms, hands -- even face and chest muscles -- contract randomly throughout the body during the night. Almost 30% had PLMS as well as Restless Legs Syndrome (RLS).
But PLMS and GRM are sneaky. Sixty percent of the patients who had sleep studies didn't know that their muscles were twitching and jumping. This is the sneaky part, since patients also didn't know that twitching was responsible for them getting too little deep sleep or dream sleep and that their brains woke up repeatedly during the night, even though they thought they were sleeping “soundly.”
In 2001, we reviewed all the sleep studies ever performed on Post-Polio Institute patients. One-third were found to have abnormal muscle movements that disturbed their sleep. Nearly half had breathing abnormalities: Ten percent had central sleep apnea, where the diaphragm stops moving; fifteen percent had obstructive sleep apnea, where muscles in the back of the throat become relaxed during sleep, closing off the throat and physically preventing air from entering the lungs; and a whopping 60% had hypopneas, where air freely enters and exits the lungs, but oxygen in your blood decreases anyway because the diaphragm is not able to move enough air in and out. Hypopneas are the sneakiest of all sleep disorders because even if someone were looking, they couldn't tell that you weren't moving enough air in an out of your lungs, that your blood oxygen was dropping and that your brain was being awakened hundreds of times a night. Overall, the combination of twitching and breathing problems resulted in our patients losing 60% of their deep sleep and 20% of dream sleep. Is it any wonder that these folks felt fatigued during the day?
We have found that a very low dose of Xanax (alprazolam) taken 30 minutes before sleep stops muscle twitching and jumping. But breathing problems have to be treated before taking Xanax, since any muscle relaxant can impair breathing. Dopamine stimulating drugs should not be used to treat RLS since polio survivors’ brain awakening dopamine neurons were already damaged by the poliovirus.
The most effective treatment for apneas and hypopneas is variable positive airway pressure (PAP), where a bread-box sized machine blows air into the nose, mouth, or both during the night to prevent floppy throat muscles from closing off the air passage and inflates the lungs. A volume ventilator is THE device to treat hypopneas.
Bottom line: Any polio survivor who has muscle twitching while falling asleep or during the night, who snores, wakes in the middle of the night with anxiety, heart racing, choking, or shortness of breath, has headaches, isn't rested in the morning or has daytime fatigue should have a sleep study in a hospital or sleep clinic.