Once upon a time, I had a great relationship with sleep. I could sleep anywhere, anytime and awake refreshed. I loved sleeping in on weekends. I loved curling up on the couch in the middle of the afternoon and falling asleep over a good book. In the 1980s, that all changed.
It started with excessive daytime tiredness. No matter how much sleep I got, I was always tired. I went to bed tired, and I woke up even more tired. At one point I joked to my roommate that I felt so tired it was like I’d run a marathon in my sleep. The next morning she told me that she’d looked into my room during a middle-of-the-night bathroom run, and that she had seen me running a marathon in my bed while fast asleep. This simple observation kicked off over a year of insanity.
I spent a week in the hospital being tested for every neurological problem my doc could think of, from tumors to multiple sclerosis to epilepsy. I had scans, including a CT with contrast where we discovered I’m allergic to the contrast. I was given such a huge shot of benadryl after breaking out in whole body hives that I was high for several days. (Yes, not sleepy, high. Paradoxical reaction.) Then there was the lumbar puncture that had me down for days with a massive headache, the nerve conduction study that left bruises over my entire body, and finally the sleep EEG.
Before I tell you about the sleep EEG, let me tell you about the nurses on my unit. They were tasked to check in on me throughout the night to see if they could observe the strange night movements. They would check one time and report to the doctor that I had slept peacefully all night long. One night, they noted that they had checked at 1:02 am and that I had been asleep in bed. At that time, however, I was actually walking the hallways because my legs were so restless. The security guard, who I walked with for several hours backed up my story that I was not in bed. At 1:02 am, I was having a tour of the lobby with him. Not that the nurses would ever admit that they weren’t actually doing their checks. Nope.
The sleep study occurred without warning one morning at 8:30 am. Yes, 8:30 in the morning. Crazy, right? They took to me a lab in a wheelchair and had me climb up on a gurney. Oh, so comfortable for sleeping. They attached wires all over my head and told me to go to sleep. I had a lovely view of the sun through the bank of east-facing windows just 5 feet to my left. The fluorescent lighting completed the mood lighting for this “sleep study.” Amazingly, I managed to fall asleep anyway, and the show began. According to the technician, she had never seen anything like it. My EEG showed that I was asleep, but my legs, arms, and entire body were flailing about crazily. She ended up waking me up in fear that I would fall off the gurney.
All this insanity ended up with me having a diagnosis of myoclonic jerks in sleep and a prescription for clonopin, which ironically made it worse. A year later, due to the jerking starting to occur during the day, I had a similar hospital stay with identical results – a diagnosis that means nothing and no help. My neurologist threw up his hands and sent me to a neuropsychologist.
The neuropsychologist was wise enough to have me fill out some dietary information. Turns out, the culprit was NutraSweet, and as soon as I eliminated it from my diet, my relationship to sleep was restored.
Fast forward to last year. I reported to a health screening at work, and my diastolic blood pressure was off the charts high. That landed me back at the doc’s being given a trial of meds to bring it down. That didn’t work, but in looking at my BP, I noticed that it was always high in the morning and low at night. I started to wonder if my legs were running marathons at night again. Indeed, I had been waking up with low back pain and tweaked muscles in my legs for a while, but hadn’t even thought about the myoclonic jerks, which are now known as Periodic Limb Movements Disorder (PLMD). My doc started me on a very low dose of a med for Parkinson’s and it seemed to be working.
Periodic limb movement disorder (PLMD) is unique in that the movements occur during sleep. Most other movement disorders manifest during wakefulness. The condition is remarkably periodic, and the movements may cause poor sleep and subsequent daytime somnolence. PLMD may occur with other sleep disorders and is related to, but not synonymous with, restless legs syndrome (RLS), a less specific condition with sensory features that manifest during wakefulness. The majority of patients with RLS have PLMD, but the reverse is not true. Treatment involves either dopaminergic medication in an attempt to modify activity of the subcortical motor system or, more commonly, sedative medications to allow uninterrupted sleep. -Medscape
Nobody really knows what causes PLMD. PLMD frequently occurs along with Restless Legs Syndrome, which is a creepy-crawly feeling in the legs that is only relieved by moving them. Ironically, exercise and stretching your legs before sleep will decrease the RLS symptoms but exacerbate the PLMD symptoms. Also, the medication that they are giving me for the PLMD is causing me more RLS symptoms while I’m awake. I don’t feel safe driving at night anymore, even if I haven’t taken the medication yet. The RLS symptoms are starting earlier and earlier in the evening, which is a known side effect of the medications.
More good news:
The idiopathic form of this syndrome may be chronic. Relapses and remissions may occur, but treatment does not appear to modify the disease. -Medscape
All that can really be done is to try to control the symptoms. There are some foods you should avoid – caffeine topping the online lists, but take it from me, get off anything with NutraSweet (aspartame) as well.
Most of the online sources talk about a stereotypical leg movement, however I’m having full body movements, just like I did back in the ’80s. The week I wrote this, I woke up with my entire right trunk in pain due to pulled muscles from the PLMD. My low back and my hips, however, are the usual complainers.
This post is a bit of a downer, but I wrote it because there is someone out there who is suffering and doesn’t know what is causing it. I hope this post will help them reach out for help. Go have a sleep study – they are better about how they do those nowadays. And for a laugh, see if you can find the Mad About You episode where Jamie has the sleep study – it’s Season 6 Episode 22. When you see Jamie asleep, you’ll understand my story even better.
Thanks to Thomas Bartherote on Flickr for the photo!