A Topic with Big Impacts: Restless Legs!

Restless legs, something I’ve been familiar with since childhood. It’s that overwhelming urge to move your legs in the evening or at night because keeping them still feels unbearable. You might compare it to the sensation of an itch that you just have to scratch. The restlessness fades when you move, but as soon as you stop, the cycle starts all over again.

Between the ages of 10 and 20, I experienced restless legs occasionally—about once or twice a month. It wasn’t unfamiliar, as my mother had similar complaints, although hers were far more severe. She often had to stay up all night because her restless legs wouldn’t let her sleep.

Over the years, the frequency increased. I started experiencing sleepless nights due to restless legs almost every week. At that point, it was still manageable—eventually, I’d fall asleep and get a few hours of rest. And when I didn’t get enough sleep, I could usually catch up the next night.

This all changed about five years ago. At the time, I had been taking antidepressants (clomipramine) for anxiety for over 15 years (more on this in another blog post). I wanted to stop taking them because they seemed to cause more problems than benefits—constipation, fatigue, dry mouth, and emotional numbness, to name a few.

For years, I had been adjusting my dosage in small increments, always under the supervision of my psychiatrist. Each time I changed the dosage, I’d experience a severe bout of restless legs, starting about three days after the adjustment and lasting around four weeks. Despite the discomfort, I decided to begin a gradual discontinuation process, starting from 40 mg and reducing 5 mg every three months. The initial reductions went surprisingly well, despite withdrawal symptoms.

But when I reduced the dosage from 30 mg to 25 mg, things changed. The usual four weeks of intensified restless legs turned into months. My legs remained agitated, and nothing seemed to help.

Five months later, I was completely drained. Not only were my legs restless, but I also felt incredibly hyperactive. No matter how exhausted I was, I couldn’t fall asleep. It felt like I had consumed gallons of coffee. I even found myself dancing in the kitchen—not out of joy, but in a desperate attempt to burn off the relentless energy. I became a zombie, only managing to fall asleep around 6 or 7 in the morning, only to wake up again after just a few hours.

During this time, I visited a neurologist at a sleep center and was quickly diagnosed with Restless Leg Syndrome. I started medication (ropinirole), which provided some relief for my legs but came with mental and physical side effects, leaving me feeling detached and as though I was living in a dream. Unfortunately, alternatives like gabapentin had similar effects.

My condition worsened. I was too exhausted to work, couldn’t concentrate, and felt completely burned out. Despite these struggles, I was determined to live without clomipramine and had completely discontinued it by then.

Eventually, I couldn’t take it anymore and resumed clomipramine under my psychiatrist’s guidance. After six weeks, I began to feel slightly better, though my legs remained restless. Then, in November, something remarkable happened: for the first time in months, my legs started to calm down. By December, the restlessness had completely disappeared. For the following months—through December, January, February, and into March/April—I experienced total relief. Not a single day of discomfort disrupted my sleep. I could finally rest peacefully, waking only briefly during the night and falling back asleep with ease.

Returning to my original dosage of clomipramine brought a sense of stability back into my life. While those grueling months left a significant mark on me, I finally began to regain a semblance of normalcy. I wasn’t yet fully myself, but I could feel that things were steadily improving.

But as spring approached, in March/April, the restless legs made their unwelcome return. At first, it was subtle, but it didn’t take long for the symptoms to intensify. Soon enough, it became relentless. The same excruciating cycle I had endured the year before repeated itself almost identically. I had to stop working again, and the overwhelming fatigue and frustration pulled me back into a dark, difficult place.

Once again, relief arrived at the end of the year. By November and December, my legs grew calmer, and sleep became easier. For a few months, I could rest without disruption, only for the cycle to begin anew with the arrival of spring.

This pattern has repeated for five years now, beginning in spring (March/April) and easing by the end of the year (November/December). I’ve consulted numerous doctors and specialists—neurologists, somnologists, immunologists, allergists—but no one seems to know what’s happening to me.

I suspect that the timing of my symptoms is significant. I’m allergic to many environmental factors, such as trees, grasses, pollen, dust mites, and even certain foods. Could my allergies be playing a role? Perhaps histamine overproduction or overly active mast cells? It might also be connected to temperature, light, or humidity—all variables that change with the seasons.

Unfortunately, issues like histamine imbalances and mast cell disorders seem poorly understood in conventional medicine, at least in the Netherlands, where I live. I’ve often found that if something isn’t widely recognized by a doctor, it simply “doesn’t exist,” which makes it harder to investigate and find solutions.

• Frequent urination, both at night and during the day.
• Constipation.
• Jolts/spasms in my body (twitches?), especially in my arms.
• Lump in my throat and nausea.
• Feeling light-headed.

If you see yourself in my story, have a solution, or know where I could find one, feel free to reply to this post or reach out to me!