In the first blog (My Fight With Sleep) of this series, I explained how I had been having an ongoing fight with sleep for two decades – at least. And how thanks to my wife we had found what was wrong and started on a course of action to take back control of my nights.
I have Periodic Limb Movement Disorder and subsequently was diagnosed with anxiety induced insomnia (or insomnia induced anxiety) and Restless Legs Syndrome. I don’t wish this on my worst enemy.
Why? I don’t have the prototypical PLMD and RLS in my opinion.
Most people who have RLS have a tingly or creepy-crawly feeling in their legs. Mine is pain and discomfort and sometimes it is excruciating. Now imagine you have that pain and you can’t be comfortable sitting or lying down because you have to constantly move. Then if you are tired enough to fall asleep, your body decides to uncontrollably kick waking you up to some degree. That’s if the RLS even allows you to fall asleep in the first place! That is my fight with my legs; that is my fight with sleep; that is my fight with RLS and PLMD.
But there was hope. My doctor had started me on some medications that through time he said would help alleviate much of my discomfort while also quelling (not stopping) my movements to allow me to sleep better. There isn’t a cure, but there is a way to mitigate it all.
From the beginning, the medication seemed to work. At the very least, it allowed me to sleep. Now at this point nearly seven years ago, I and my doctor(s) were only focused on my sleep and how PLMD was affecting it. I don’t remember what exact medications or dosages were given to be to start, but I think it all started with 300 mg of Gabapentin about thirty minutes before bedtime. It was a difference maker at first. I felt like I could sleep better. I may have experienced my first memorable dream in a very long time. I felt better in the mornings. I also didn’t experience nights where it simply felt like I hadn’t slept.
That last part was key. There could be night upon night where it felt like I could sleep. I would be exhausted and ready to collapse, but the clock would seem to continuity tick along later and later into the night, or into the morning. When I finally fell asleep, I may only get a couple of hours before my body would wake or I would have to get up for school or work.
As a result, I tended to look for things to do. I would either work longer hours or hang out later at night with friends. Anything I could do to be exhausted by the time I got home and needed to be in bed. One time I worked 100 hours between three jobs in the span of five or six days shortly before Christmas. You read that right! I then got a few hours of sleep and hit the road for what should have been a 12-13 hour drive to my parents place in Maine. It took me 17-plus hours thanks to winter weather, last minute shopping stop, and needing to sleep on the way. It was brutal. So even a small bit of medicine was a life changer. However, it only starts there. Over the course of the next six years the dosage of Gabapentin would go up along with the frequency. Three additional medications would eventually be added. At the height of my medication cocktail, I would be on the following protocol:
- 600mg of Gabapentin twice a day (5pm and 11pm)
- 3mg of Ropinirole once a day (11pm)
- 100mg of Trazodone at bedtime
- 15 mg of Flurazepam at bedtime
Throughout time, it all made a difference. However, I was also having to get the medications adjusted. They also had their side affects some of which I wouldn’t realize until far after I started taking them.
For example, I discovered recently the Gabapentin and the Ropinirole tend to lead to weight gain with the Gabapentin having a water retention affect. That would explain how I’ve gained 25 pounds or more since starting the medication and struggled with getting and keeping weight off. I’ve tried diet changes and working out far more, no difference.
The other kicker: the medication tended to lead to the urge to eat late at night. Bingo! I have always wanted to have a late night snack, but most of the time I attributed that to the fact I have always had a late meal due to my previous, and even current, work schedules. Then more recently, I attributed that when my legs were really bothering me I would have the urge to eat. That may have been a contributor, but the medication was the main reason. Some people will actually binge eat late at night. I always had what my wife classifies s a “hearty snack.” Even if I was having a healthy snack, it’s still calories I didn’t need late at night while trying to lose weight.
The Trazodone and Flurazepam had a more immediate side affect. I took these drugs to not only help me fall asleep and combat insomnia/anxiety, but to keep me asleep. Both would make me groggy in the mornings, but it took at least two years of being on the Flurazepam before the doctor indicated it could keep me groggy for up to ten hours after I took it. That was shocking and eye-opening news. I had been going to work at 5am and even 10am and feeling lousy. It’s like I had really struggled to stay asleep and my work seemed to be affected.
I also struggled to get up and get going in the mornings. Again, I took this as the fact I must have had a bad night… though I also figured every night was bad. I didn’t put it together that on weekends when I would sleep in, that I was sleeping pretty late and able to get up a bit easier.
The very medicines trying to help me sleep where affecting me getting up, staying focused, and helping put more weight on my body… and I wasn’t realizing it.
But that’s not all. In my next post: My Fight With Sleep Becomes Addicting.