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Movement Disorders and Migraines

Movement Disorders and Migraines

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.

Have you ever experienced these symptoms and brushed it off? I encourage you to talk to your Headache Specialist.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • irish lass
    3 years ago

    Wow the things I learn on this site, thank you. I also have this weird movement at night….the need to move my legs, shake my feet, almost non stop a few hours before bed. And then in bed I move my legs all night. Bothers me a lot, must be driving my husband crazy. At some point in the past I developed (acquired?) restless leg symptoms, I had to take another drug for that too. I always felt it was a side effect of one of the many drugs they had me on at the time, and still feel that way as I haven’t had restless leg in several years now. So I had a few years without constant movement, and this need to shake/move my legs/feet. I will mention it to Dr Diamond when I next go for my shots to my head this month. I have never even considered mentioning this ‘affliction ‘ as it seems there are too many other things to squeeze into the very limited time in front of the specialists. And of course my mind doesn’t function as crisply and efficiently as it once did. Thank you for bringing this to my attention.

  • Joanna Bodner moderator
    3 years ago

    irish lass,
    Thank you SO much for sharing this! I am thrilled to hear that this article hit home for you and that it triggered you thinking to discuss these symptoms with your doctor. It’s always a good idea to journal and track your migraine symptoms and triggers as much as possible as this will provide the best information possible to your specialist. Here is a link that may help you out: https://migraine.com/migraine-meter/…because as you mention…time in the visit tends to be quick and limited! Thank you for being part of our community and especially for taking the time to comment.
    Take care,
    Joanna (Migraine.com Team)

  • Sojgrensplusmigraines Sue
    3 years ago

    I also have RLS along with migraines. After several years on klonapin for the RLS, I saw a neurologist with the goal of weaning off of klonapin which causes dependence. He suggested Gralise, a time released version of Gabapentin. I have found the Gralise to reliefe my RLS almost completely, plus decrease my migraine frequency. I had mild dizziness in the mornings at the start of the treatment, but none since on maintainence dose for the past 16 months. The Gralise is taken each evening with my food/dinner. Taking with food enhances absorption.

  • Macbeck
    3 years ago

    I’ve recently developed significant jerking at night (past few months), mostly while going to sleep or waking, but occasionally wakes me during the night.

    Definitely going to talk to my neuro doc about it!

  • Jennifer Rood
    3 years ago

    I have had the same issue for several years. I often wake up with a full blown migraine, sometimes already in the middle of the night. I had a TIA over 10 years ago and just thought that was the corelation. My fingers also extend involuntarily as well.

  • Sean
    3 years ago

    Well now, this is interesting. I’ve been having what I could only describe to my Dr. as involuntary muscle movements involving my legs, torso, arms and head, I almost hit myself right in the face with my hand stopping just before it did, arm just flying out while lying down & hitting wall, I’ve been moved while half asleep on my side as if someone pushed me on my shoulder repeatedly, leg contractions, my torso suddenly pulling down causing my legs and upper body to raise up which with my ruptured discs in my back makes for some very painful moments, if I’m sitting and leg is held down by other leg over it, it will pull my upper body forward, same with the legs and the sciatica, I’ve stopped holding drinks in my hands beyond the time it takes to get a sip, sudden hand jerks also, legs moving while driving, left one only thank goodness, about a year ago I started having reactions to things happening in movies even ones that I’ve seen before so it’s no surprise when something happens or is about to or you can see it coming, not fright things but a lot of defensive reactions movements. It does make getting sleep hard to do as the movements happen when half asleep or having just fallen asleep to the point where I feel like leaving the camcorder on just to see how much of this is going on while asleep. I had an MRI done 9 yrs ago as part of diagnosing me for the migraines and it showed no abnormalities, can’t do anything requiring me to have a steady hand and or arm anymore and there’s no rhyme or reason to it other than after doing too much work around the house/outside. Dr. put me on Baclofen to help but 3 pr day on top of the other meds for my back with the degenerative discs disease means no driving so I only take one when the movements are really bad. So thank you, I at least have something to bring up with my Dr. and although it seems like I’m having much more going on, it’s different moves at different times and I just wanted to put all of them down in case anyone else is experiencing this-it can be weird.

  • Katie M. Golden moderator author
    3 years ago

    Sean,
    Thanks for sharing and maybe now you know a little to talk to your doctor about it.

    Your movements do seem a little more severe. I suggest getting a referral to a movement disorder specialist, which is a neurologist that focuses on these types of movements. Since its been 9 years, it wouldn’t hurt to get a new MRI.

    Let us know how it goes.
    -Katie
    Migraine.com Moderator

  • kim716
    3 years ago

    I just have a question… Does anyone have any of these movements during the day as well? Or is it just at night? I haven’t really noticed any pronounced movements at night, but I will sometimes have a spasm or twitch in my arm, neck, back, or leg. They aren’t huge movements and it doesn’t happen very often. I was just wondering.

  • Katie M. Golden moderator author
    3 years ago

    I do get these movements during the day. It’s usually when I’m sitting still or even working on the computer. It could be my legs, shoulders or even arms. You should probably talk to your doctor.
    -Katie

  • mxj8jk
    3 years ago

    Wow! When I was chronic* my husband told me that I did this every night. My docs blew it off. Good info!

    (Now I only get migraines 3 – 4 times a week instead of daily)

  • Tammy Rome
    3 years ago

    I was diagnosed with RLS a few months after I received my sleep apnea diagnosis. The doctor started me on Mirapex and iron supplements. Both have greatly improved my sleep quality!

    So glad to hear that you got a diagnosis and treatment. I, too, worried that it might lead to MS, ALS, or Parkinson’s. It’s good to know that is not the case.

  • Katie M. Golden moderator author
    3 years ago

    Thanks for sharing Tammy!

  • Monica
    3 years ago

    YES!!!! I’ve experienced this and it has FREAKED me out! I’m so going to look into all that you wrote with all my docs. Thanks for sharing this!!

  • Trena Anderson
    3 years ago

    WOW! I was very recently diagnosed with Essential Tremor. I was wondering if there was a correlation between migraine / seizures / tremors? Thank you for once again answering my questions before I ask them. I will ask my Doc to check my iron level as well.

  • Eleanor R.
    3 years ago

    I’ve been having a fatigue problem for some years; I assumed it was connected with the migraines (I am chronic) b/c it seemed to appear between headaches. However last December I realized that it was caused by my sensitivity to wheat; I had known I couldn’t each much wheat, but apparently even a tablespoon of cous cous is too much. I’ve been totally off wheat since then, and my energy is better. Had a brief fling with certain dairy too, and fatigue was one of the problems that resulted.

  • Katie M. Golden moderator author
    3 years ago

    @NeuroScientist34,

    Thank you so much for your detailed explanation. It absolutely makes sense as to why these issues are related.

    I hope you keep coming back to the site. Your input was invaluable.

    -Katie
    Migranie.com Moderator

  • LT
    3 years ago

    I get acute attacks of akathisia from medications such as metoclopamide and SSRIs. It feels like the worst claustrophobia, like I am trapped in my own skin, and I can’t stay still – I have to move, I am panicked and agitated. I have come close to taking out my own IV when I’ve had this reaction in the ER and leaving because the urge to run is so strong. So it’s not a chronic movement disorder, but it’s related. From what I understand it is also has to do with dopamine.

  • Katie M. Golden moderator author
    3 years ago

    LT,
    I get that feeling when I take Reglan or Compazine. It’s the worst and nothing I do can make it better. Now when asked if I have any allergies to meds, I tell them about those two. Sometimes if they really want to use those meds, they give me Ativan first and then I don’t have those side effects.

    I know we’re talking about different meds, but you should talk to your doctor about the side effects.
    -Katie
    Migraine.com Moderator

  • Kate
    3 years ago

    I too have PLMD (and NDPH, migraine, apnea, and more). Mine is only in my sleep, and presents as twitching or shaking my legs. It was considered severe due to the number of movements and awakenings per hour, but thankfully is under control with a very low dose of Gabapentin at bedtime. Before that I tried Requip and Mirapex, usually considered first line meds, but didn’t tolerate either.

    Klonopin wasn’t an option for me as I’m on daily opioids for the constant NDPH headache (Methadone). Unfortunately I didn’t notice a change in my daytime sleepiness from treating the PLMD (and the apnea–I tried CPAP for awhile), but my husband sleeps better!

    I’ve ended up on Ritalin for the daytime sleepiness. The cause is unknown, and we’ve ruled out my pain meds and my known sleep disorders. I’m glad my pain clinic referred me to a sleep specialist (which it appears they do for everyone on Methadone, especially if they report daytime sleepiness). Best wishes.

  • Katie M. Golden moderator author
    3 years ago

    Kate,
    It sounds like taking care of your sleep issues has really improved your movement disorders. I don’t have anything for daytime sleepiness and require a 1-2 hour nap everyday. I should ask about Ritalin when I really can’t sleep during the day.
    Best Wishes!
    -Katie
    Migraine.com Moderator

  • NeuroScientist34
    3 years ago

    Hi Katie,

    I love reading your work. To answer your question, think about the neuroanatomy of both migraine and RLS/PLMD.

    Migraine is primarily thought to be caused by dysfunction in the trigeminal-vascular system. The trigeminal nerve has its nuclei in the midbrain.

    The substantia nigra is also in the midbrain (think iron deficiency), as well as the mesolimbic dopaminergic pathway from the midbrain to the thalamus and limbic system all have connections there.

    Migraine is also thought to have a component of “central sensitization” in the midbrain and cerebral cortex, or essentially altered activity and response to incoming and outgoing signals. Therefore, it is not unreasonable to hypothesize that if one has dysfuction in the trigeminal nuclei as well as central sensitized neurons in *nearby* areas, the extrapyramidal motor system and mesolimbic circuits may also experience dysfunction.

    Taking into account inter-individual variability, the overlap of migraine and RLS/PLMD is about where you would expect.

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