Mystery sleep disorder SOLVED!

I don't usually discuss personal health issues unless they are really funny, ironic or just downright weird. Maybe it's because I'm (knocking on wood) usually pretty healthy and therefore don't have anything to blog about. Whatever the reason, I'm glad I don't have to do this very often. However, I do feel like this story is important enough to share with the hope that maybe someone else out there is having a similar situation and may benefit from my trial-and-error experience.

My little health saga began years ago when Marcia first started complaining about my leg movements at night when I was sleeping and she was obviously not. I have rarely had any problems sleeping and been physically fit for most of my life, plus I tend to have very "action" oriented dreams like cycling, running, flying, etc. So when she told me that my leg would periodically move when I slept, I just wrote it off as a side-effect of an active dream. Besides, neither of us were losing sleep at that time as a result so it didn't matter.

Fast forward to a few years ago, just after we had moved to Stillwater from Austin. After the first couple of months we were there Marcia noticed that my leg movements were becoming much more pronounced at night, sometimes to the point of kicking and waking her. As usual I was asleep and didn't notice a thing, but I did start to complain about recurring tendonitis in my left knee. That problem had also begun years ago and was one of the excuses I often used to explain why my leg moved of its own accord. I made a point of keeping track of when my tendonitis flared up and tried to correlate that to my leg movements. Soon I began to notice an occasional strange sensation in that same leg when I was preparing to fall asleep, sort of a tickling feeling that made me feel like I had to move my leg for releif. This has since come to be known by the general public as Restless Leg Syndrome (RLS), but at the time I wasn't sure that this was the cause. Unfortunately my nocturnal leg movements had also progressed in frequency and duration to the point where they were waking Marcia on a regular basis - definitely NOT good.

During our time in Stillwater we had kept using our general physician in Austin, and on my next checkup I mentioned these problems to him. He made an initial diagnosis of RLS and suggested physical therapies for my leg like stretching and hot-water baths (note: this was before medications were available to treat RLS symptoms). I tried these treatents but had limited success. At some point after that Marcia and I attended a health forum at OSU which included a discussion of sleep disorders including RLS, but when Marcia described my symptoms to the lecturer he seemed to think it was nerve damage rather than RLS. Besides, the sensation that I had which is described as RLS did not occur very often but my frequent leg movements were now occurring nearly every night.

My symptoms remained at this level until after we had moved back to Austin. Approximately 5 months ago (not long after the allergic reaction that sent me to the hospital) my symptoms changed dramatically. Whereas before I had been moving or kicking my leg, now Marcia was reporting that my entire body was convulsing in regular periodic spasms just moments after I had fallen asleep. This bizarre behavior went completely unnoticed by me since I was sound asleep - sometimes so deeply asleep that Marcia couldn't wake me without effort. I began to notice that no matter how much sleep I got, I always awoke tired and sometimes sore as if I had been moving all night long. What is worse is that now Marcia was getting hardly any sleep at all because of my thrashing, and soon I began sleeping on the couch rather than keep her awake. I had also begun to experience what is medically described as a repeated "hypnic jerk", a convulsive full-body jerking movement that causes a person who is falling asleep to suddenly awaken. This would occur multiple times to me during the night at seemingly random times.

After doing some online research of symptoms, I came to the depressing conclusion that I was experiencing Periodic Limb Movement Disorer in Sleep (PLMD or PLMS) - a neurological condition of unknown origin but similar to epilepsy in symptoms. I went to my physician with this new information and he prescribed several drugs for me to try: Clonazepam (an anti-convulsant) and Cyclobenzaprene (a muscle relaxant similar to Valium). I dutifully followed these pill regimens for several weeks with absolutely no improvement to my symptoms. Also during this time I tried several medications that Marcia had been prescribed to help with her Sciatica pain: Vicadin (a strong general pain reliever) and Neurontin (a neurological pain reliever). Nothing seemed to releive my symptoms, although the Vicadin did make me less painful in the morning. Another trip to the doctor and more prescriptions: Tramadol (a different pain reliver) and Requip (the new drug for treating Restless Leg Syndrome). Initially I had some small relief using the Tramadol in high dosage, but the symptoms persisted and now the Requip was causing an unwanted side-effect of prolonged nausea.

By this point we were both becoming very concerned about my condition, partly due to our upcoming two-week driving trip to California. Marcia had made our reservations months in advance for this trip, and in almost every case there would be no separate place for me to sleep in the event my symptoms persisted. By this time I had increased the Requip dosage to its maximum and was getting a little more symptom relief, so we crossed our fingers and went on the trip. Fortunately our first day on the road was so long that we were both exhausted when we went to bed that night and consequently got a fair night's sleep. The second night we stayed in Las Vegas at T.I., and amazingly every night we were there my symptoms were diminished to the point where we both slept well. Was the Requip and Tramidol combination finally working after all?

No such luck. Our next stop was a B&B in Paso Robles, and both nights there my convulsive movements returned with a vengance despite all the medication. This persisted for the following two nights we spent at an inn in Los Gatos, but at least there I had a sofa to sleep on. By the fifth day Marcia was very tired and iritable (with good reason!) so when we arrived at the inn in Monterey I was pretty depressed to see there was no addiional place in the room for me to sleep. However, that night and the next we both slept better than we had in months. Marcia said that I hardly moved at all after falling asleep, something that she hadn't seen in months. Fortunately the following two nights on the road home were in rooms with two beds so we didn't have to press our luck there. Unfortunately, once we returned home the symptoms picked up again and I was back to sleeping on the couch.

During the ride home we had plenty of time to consider what had made my symptoms seemingly disappear in Las Vegas and Monterey. In both cases, the beds that we were sleeping in were extremely soft and comfortable - much more so than in the other places we stayed or even ours here at home. With that in mind we purchased a pillow-top comforter to go on top of our mattress. As expected this turned out to be much more comfortable than our regular mattress alone, but unfortunately not enough to lessen my symptoms.

Getting desperate and quite a bit discouraged, I stopped taking all of the prescriptions and asked Marcia if she could watch me carefully as I fell asleep and try to remember every detail about what was happening to my body. The next morning she described how I would begin to fall asleep, jerk awake, fall back asleep, begin snoring loudly and almost immediately my entire body would start repeatedly convulsing in 6-8 second intervals. This pattern continued interspersed with occasional hypnic jerks until either she would fall asleep for a while or I would finally awaken and move to the sofa.

Wait a minute. All this time we had both been focused on my periodic body movements - twitching, jerking, convulsing - and I had not considered the implication of the frequency of these movements. They only happened after I was asleep, then repeated regularly every 6-8 seconds. What was so unique about that time period, and why did it only happen when I was asleep? What could I be doing every 6-8 seconds when I slept that I didn't do when I was awake?

Breathing. Or more precisely: NOT BREATHING!

I had known for many years that Marcia and most of her family suffered from sleep apnea (frequent prolonged cessation of breathing during sleep), but I had never seen her convulse or even twitch in her sleep as a result. Snore, yes. And she had noticed that I started snoring as soon as I fell asleep. Could it be that simple?

That morning when we went to Target I purchased a box of breathing strips (like from the commercial where the geeky guy keeps saying "I'm an inventor"). These are small plastic strips with adhesive on one side that you place across the bridge of your nose to open your sinus passages. That evening I cautiously refrained from taking any prescription drugs (although I did take a Melatonin tablet to help me get to sleep), applied the nose strip and crawled in bed for the night. The next morning I woke up to find myself still in bed and Marcia was still asleep. My throat was a little raw and my mouth very dry, but I felt better that morning than I had in months. After Marcia woke up I asked her how the night went and she said "it must have worked because I didn't wake up once".

It has been over a month now and except for one night when I just slept poorly due to the cats parading across the bed, everything is back to normal. I wake up refreshed each morning, I don't fear going to sleep any more, and Marcia is catching up on the sound sleep she has missed for so long.

So, for any of you readers out there who wake up tired in the morning after a regular night's sleep, my suggestion is to first look for symptoms of sleep apnea or impaired nocturnal breathing. And if you snore or even suspect you do, give the little nose strips a shot. It just might make your days a lot more pleasant.

Note: if you are an adult, try the LARGE size first and follow the directions on the box explicitly to get the most benefit.