I belong to the 1 to 2 percent of the Swiss population who suffer from a severe form of restless legs syndrome (RLS). It all started when I was in my forties. My legs began to twitch more and more frequently for no apparent reason. The symptoms worsened throughout the day—on the train, at work, or while falling asleep. I woke up more and more often at night, plagued by uncontrollable spasms. The only thing that helped was pacing around the apartment. The spasms would stop immediately. But as soon as I lay down, the whole thing started again. A vicious cycle began: During the day, I was increasingly nodding off at work due to sleep deprivation. And at the same time, the nighttime twitching attacks became more and more intense. Finally, I went to my family doctor, who immediately ordered an evaluation in a sleep lab. Afterward, my condition had a name: Restless Legs Syndrome.
Illness without suitable medication
Because RLS is poorly understood and there are no suitable medications for the condition, my neurologist prescribed a Parkinson's medication. This is common practice for RLS. The medication is called Madopar® and contains the active ingredient L-Dopa (levadopa). The drug helped me to better tolerate my RLS. The drawback: I can't take too much, otherwise the effect reverses and I become even more restless. After a few years, it reached a point where L-Dopa was barely effective anymore. An odyssey began during which I tried numerous other Parkinson's medications, neuroleptics (tranquilizers), and even higher doses of opiates. None of the medications provided lasting relief.
I discovered the positive effects of cannabis on my symptoms by chance when a joint was being passed around among my friends. I took a few puffs and then slept like a log. From then on, I always used cannabis to help when my medication wasn't working. And I'd even go so far as to say that it prevented me from committing suicide—as my grandfather had done. He also presumably suffered from RLS and was therefore involuntarily committed to a psychiatric hospital several times. I'd rather not imagine what they did to him there, from tying him to the bed to giving him electric shocks.
Keeping still means "torture"
For people with RLS, having to sit still can be extremely painful, depending on how they feel and the time of day. It took a lot of energy for me to work normally. Endless meetings in the late afternoon were particularly bad, because that's when my symptoms worsened, and they still do today. For years, I kept my condition a secret at work, fearing I would be labeled "ill" and no longer productive. I persevered for over 15 years and even sought psychological treatment because the situation was so stressful. Only at the very end of my career did I finally disclose my condition. At 60, I took early retirement. Since then, I've been able to manage the condition better: I go running, cycling, or swimming when the twitching starts in the afternoon. This helps a lot, as long as I don't overdo it. Because if I overexert myself, the opposite happens – I can't sleep at night.
Trouble with the "legal" medications
Since my Parkinson's medication (L-Dopa) only provides limited relief and I initially didn't want to rely on "illegal" cannabis, my doctor obtained a special permit from the Federal Office of Public Health (FOPH). Following this, I tried legal cannabis tinctures and later the approved cannabis spray Sativex. Both, due to their high cost of 1,500 to 3,000 Swiss francs per month, only caused me problems with my health insurance. I had to appeal all the way to the head of the insurance company before they finally agreed to cover the costs of the medication "as a gesture of goodwill." Furthermore, the tinctures offered little relief from my twitching.
Since that negative experience, I've been using cannabis flowers for therapy – alongside my Parkinson's medication, L-Dopa. I have to obtain my cannabis on the black market, which I'm not happy about. Therefore, my wish is that the legislation changes to benefit people like me. That it finally becomes legal for us to grow or buy and consume cannabis – including the active ingredient THC – for therapeutic purposes. That would take a huge weight off my shoulders and the shoulders of other affected individuals.
