Searching for the correct diagnosis

“Not only do I still have twitchy legs sometimes during the day, but I’m so tired all the time. And some days I just can’t get out of bed at all. I can sleep all day, and it doesn’t feel like a choice I’m making. I just wake up in the afternoon/evening and feel depressed that I’ve lost yet another day to my poor health.”
8/10/18 webpage post

On Thursday I went back to the neurologist as a follow-up to my first appointment a little over a month ago. I’ve been taking gabapentin every night, in addition to the Requip, and that combination of drugs seems to be keeping my legs remarkably calm before I fall asleep at night. I haven’t had trouble with muscle spasms plaguing me after I get in bed, at least. (Unmedicated I’m still a huge mess. I dozed off on my couch the other evening and my legs immediately started twitching. It’s super frustrating.) It’s a major improvement over the situation I was dealing not that long ago, before I started taking any medication specifically for Restless Leg Syndrome (RLS). Unfortunately, I’m still feeling tired all the time so, while there has been definite progress, I’m not completely back to normal. When I told the doctor about my constant exhaustion he had a couple of thoughts. First of all, he theorized that the prescriptions I’ve been taking are meant for RLS, but might not be giving me the best results if I have Periodic Limb Movement Disorder (PLMD). This is what one previous doctor and the technician at my sleep study thought might be the root of my leg spasm problem. With that in mind the neurologist gave me an additional prescription for Klonopin to see if that helps me get some actual restful sleep at night. (Yep, that means I am now taking three different anti-seizure/convulsant drugs every day. Fun!) But if after a few weeks of this new protocol that doesn’t work, he suggested that I might have narcolepsy.

Narcolepsy is a condition that I knew very little about before Thursday. With my limited knowledge I thought it meant that sufferers had a tendency to simply doze off at the drop of a hat, but obviously it’s more complicated than that. From what I read, in addition to excessive daytime sleepiness (which I certainly have trouble with), narcoleptics experience abnormal REM sleep. The neurologist told me that in order to get a diagnosis I would need to do another sleep study where I would be allowed to fall asleep for several short periods of time to determine whether my brain goes through the proper progression into REM sleep. Narcolepsy apparently causes people to go directly into REM sleep without the usual hour and a half or so of NREM (non-rapid eye movement) sleep beforehand. While it sounds a little far-fetched, I wouldn’t be at all surprised if this is the cause of at least some of my medical problems. I hate to admit it, but I doze off at work sometimes. Only for very short periods of time, but it happens. Especially in meetings, and especially if I haven’t had enough caffeine. Fortunately I don’t seem to have any of the other, scarier narcolepsy symptoms – like cataplexy (periodic loss of muscle function), hallucinations, or sleep paralysis. That also means that narcolepsy might not be the right answer. We’ll see. I have another appointment with the neurologist in six weeks to discuss a path forward. I have some hope that we are zeroing in on something.

On the plus side, I’ve been able to start reading again! I’ve always loved reading, and I used to look forward to immersing myself in a good book when I crawled into bed every night. It was the way I wound down and calmed my brain after a busy day. It usually made me drowsy too. But before my days of taking any RLS drugs I started getting twitchy legs when I was stationary for more than a short period of time – either lying in bed or sitting on the couch. This really put a damper in my reading habit. Books by my favorite authors that I was dying to read piled up in my Kindle app while I was desperately trying to avoid the muscle spasms that made me want to crawl out of my skin. But now that I’m fully medicated at night I can read for a while before falling asleep without worrying about leg craziness. It’s a miracle! Even though I haven’t yet reached the end of my road to recovery (or remission), I’m still so grateful to modern medicine for improving my quality of life. Maybe one day I’ll even feel normal again!