PLMD/PLMS Personal Story
Husband's History
Loud snoring if very tired. Dilantin for epilepsy (grand mal) since 1965. He would often fall asleep while watching TV in the early evening. Tests that included an EEG, plus the absence of seizures for several years led to family doctor's recommendation that the very low dose of Dilantin be discontinued. He would often fall asleep while watching TV in the early evening.
Symptoms, Treatment
What husband noticed - Absolutely nothing! What I noticed - within 6 months of no longer taking the Dilantin, every 2 or 3 nights, most noticeably on Sunday nights (before going back to work on Monday) my husband's legs or arms would 'jerk' every few seconds, after he'd been asleep for about an hour. This became more frequent as the months passed, increasing to every other night and occurring every24 to 27 seconds. First a leg would 'kick out', then an arm. While he slept through this, I either 1) was wakened by the movements or 2) couldn't get to sleep, waiting for the movements to start.
At first I believed the jerking movements might be related to the stress of returning to work on Mondays, when it happened mostly on Sunday nights. Later, as the episodes occured more often, but not every night, we thought they might be caused by general anxiety, seizures, foods or by caffeine.
After many months, my husband finally took some time off work to see a doctor about the symptoms. In fact, over the next number years he went to several family doctors about the problem.
What the doctors suggested
1. take sleeping pills [prescribed by 2 different doctors, even though I was the one who had trouble sleeping!]
2. get lots of exercise [my husband has a physically demanding job, and gets plenty of exercise]
3. avoid caffeine and 'heavy' foods before bedtime [we'd tried this before going to the first doctor for help]
4. sleep in separate beds [no diagnosis/treatment of the problem with this suggestion]
5. if you're sleeping okay at night, maybe your wife is just making it up [this is what a doctor actually said]
The Effects
Time passed. I grew more tired, alternating between insomnia and coping with waking up 1 to 3 times per night because of the movements. The PLMD eventually began to occur every night, without a break, but my husband continued to sleep through and was still completely unaware of the symptoms.
My husband's personality gradually changed. He was very difficult to get along with. Due to the poor quality and amount of sleep that I was getting, I was probably much the same! He was short-tempered, moody, absent-minded and hostile. He didn't look well, his face was drawn and he had poor skin color. A couple of years before he was finally diagnosed, he began taking afternoon naps on his days off from work, because he was very sleepy during the day.
The doctor who had suggested the problem was all in MY head made my husband think that maybe I was imagining things, and that he really didn't have a sleep disorder at all. We had arguments about this, and I'm amazed now that we didn't get divorced, with all that went on through these difficulties.
Finally - A Diagnosis
We moved 'back home' to a large city, and went to a doctor we used to see several years before. He sent my husband to a neurologist. Klonopin (clonazepam) was prescribed. The clonazepam seemed to help a little, but the jerking was still bad enough that we had to sleep separately.
We went to a new doctor and asked that a sleep study be arranged at a sleep center. The new neurologist contacted by this doctor ordered a sleep study. Thanks to a cancellation, my husband got an appointment within a few weeks.
From the results of the sleep study, the diagnosis was -
1. minor sleep apnea and
2. PLMD (periodic limb movement disorder)
The sleep apnea is so mild that only a recommendation for weight loss was made. It's not serious enough for further treatment at this time. PLMD, which is thought to be caused by the over or underproduction of some substances in the brain, said the neurologist (see FAQ for a list of causes) is often treated with Pergolide (Permax) or with Sinemet (Levodopa and Carbodopa). My husband had some side effects from Permax, so he is currently taking Sinemet controlled-release tablets Levodopa 200mg and Carbodopa 50mg as well as clonazepam 0.5 mg at bedtime. He had regular appointments with the neurologist every few months, at first, but later, the family doctor was able to take over prescribing the medication.
Results and Current Status
While my husband and I continue to sleep separately, due to the jerking movements that are still present (though not as bad as before he began the medication) it's been a relief to find a cause for the disorder.
Since beginning the medication, he looks healthier. His personality has improved and he is far easier to get along with than in the years before treatment.
Hubby wakes after about 6 hours (after taking the medications) but is usually able to doze or get back to sleep for a while before arising for the day. While Requip is often prescribed now, for RLS especially, he does not want to try it, since one *possible* side effect is falling asleep easily, while driving (!) for example, and this effect may occur up to a year *after* the medication has been stopped...so we are somewhat against this drug, at least at this time.
The family doctor has suggested that he try a larger dose of Sinemet for the early morning wakefulness.
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