Movement Disorders and Migraines
Last updated: June 2023
Last year, I started to notice that as I was falling asleep, my body would contract, twitch or move on its own. It was not just limited to my legs. I could be stretched out and then suddenly I would contract into a ball. My boyfriend would be in bed reading as I feel asleep and confirmed these actions. He even said once I was asleep that sometimes I would have tremor-like movements.
I hadn’t started a new medication and I double checked all of my regular meds to make sure this wasn’t listed as a potential and rare side effect. So I mentioned it to my Headache Specialist. She was slightly concerned and referred me to a Movement Disorder Specialist within her Neurology group. Those words were scary, Movement Disorder Specialist.
Could it be ALS? MS? Now I’m paranoid.
I met the Movement Disorder Specialist with a list of questions in hand. He said that I was experiencing myoclonus jerking movements, which is a symptom of an issue, not a diagnosis. Likely I was not getting quality sleep as this happened through the night thereby exacerbating my headaches. He prescribed klonopin to help me sleep while we figured out what was happening.
Next, came the battery of test. Blood tests, new MRI, sleep study and even recording myself trying to fall asleep so the Doctor could see the movements I described. After about 8 months, I was diagnosed with Periodic Limb Movement Disorder (PLMD) and Restless Leg Syndrome (RLS). RLS is experienced by 1-10% of the population, but PLMD is more rare. Lucky me.
RLS is characterized “by uncomfortable and sometimes painful sensory disturbances in the lower limbs producing an irresistible urge to move in order to relieve the sensation, particularly at rest and at night.” That’s for sure. At night I get fidgety and can’t sit still. My daily Migraine pain also increases during this time.
PMLD has similar symptoms. It causes “repetitive, non-epileptic movements of the limbs. It occurs during wakefulness preceding sleep and during sleep.” Leg muscles are often affected, however upper limb muscles are also involved.
After hearing that I had two movement disorders, in my mind I still worried about this turning into something bigger down the road. Then all my fears washed away as the Doctor told me that having one or both of these disorders does NOT lead to other neurological diseases such as ALS or MS. So while having to manage another medical issue was going to be annoying, I felt so much better knowing that I didn’t have to wait for the other shoe to drop.
Causes for both PLMD and RLS include brain dopamine hypoactivity, dysfunctional brain iron metabolism; genetic linkage; and sleep disturbance. The Doctor had told me that my iron count was within range but on the very low side, so he put me on iron supplements. My grandmother currently gets frequent iron infusions so there could be a genetic link, at least with the iron deficiency.
With PLMD the standard is that the characteristic jerking movements occur at least five times during the night. My Doctor told me that I was doing this at least five times per HOUR. No wonder I never felt rested.
I was curious if RLS and PLMD were comorbid conditions with Migraineurs. I found two studies that suggested both RLS and PLMD were more common in those who experience and sleep apnea, ADHD, seizures and Migraines. With RLS the study noted that it may increase the severity of Migraine symptoms and make it more difficult to effectively manage patient care.
It took about a year to figure out what this annoying condition was. Along the way I learned that I don’t have a horrible degenerative disease and that my sleep and Migraines were impacted by these two conditions. Now being on medications to control the involuntary body movements, I have noticed that I get better sleep.
In the past year, has insurance made it difficult to get your migraine treatment?