Tics worse when walking than when lying down

[Sheila]

A parent sent a private message to me saying that her teenage son does not tic much when lying flat, "but the moment he starts to walk he will tic very frequently. Not sure whether it is body structure issue - spinal related or something of that sort. He has grown very much taller over the year."  The tics in this case are vocal tics and shoulder shrugging.

I've written to her to check this thread for a response.

In case it may help, this is an excerpt from my book Natural Treatments for Tics and Tourette's: A Patient and Family Guide

Gerald Erenberg, MD, advised ACN that when tics begin with the anticipation or the onset of physical movement, as when preparing to start running, it may be symptomatic of a rare brain disorder known as paroxysmal kinesiogenic choreoathetosis. A movement specialist should be consulted for a proper diagnosis and treatment.

Please see this information below from Wikipedia. Anti seizure drugs appear to be recommended for this particular movement problem. Similar but different issues are also described below. Let us know if any of this seems to apply. 

Paroxysmal kinesigenic dyskinesia is diagnosed using a strict set of guidelines. These criteria were studied and confirmed by Bruno et al. in a study of 121 individuals with PKD.^[3] The age at onset is between 1 and 20 years old. The attacks of involuntary movements last less than one minute and have a known trigger, usually a sudden voluntary movement. For example, if a PKD patient stands up or begins walking after being sedentary for a period of time, or a person goes from a walk to a run, it can trigger an attack. Persons with PKD do not lose consciousness during attacks and have a full memory of the entire attack. Lastly, people with the disorder have a good response to medication and are usually prescribed anticonvulsants. The study also found that patients with familial PKD exhibit symptoms that follow the diagnostic criteria closely, while sporadic PKD individuals may deviate slightly.^[5] Prior to criteria for diagnosis being set out, many patients with PKD were often diagnosed with some form of epilepsy. Many patients also experience an aura, similar to those experienced with epilepsy, preceding their attacks. Some patients describe it as a tingling sensation in the affected limb or “butterflies in their stomach.” Some individuals also have precipitants, such as stress and anxiety, that make it more likely for attacks to occur.

The above diagnostic criteria also set PKD apart from the other paroxysmal dyskinesias, which include paroxysmal nonkinesigenic dyskinesia (PNKD) and paroxysmal exercise-induced dyskinesia (PED). While PKD attacks last less than one minute, PNKD attacks last a few minutes to a few hours, and as the name suggests, the attacks do not occur because of a sudden voluntary movement like PKD.^[5] Additionally, PKD can almost always be managed with drug therapy, while PNKD is not as responsive to anticonvulsants. PED, on the other hand, separates itself from PKD in that it is caused by prolonged exercise. Attacks from PED will cease soon after exercise is stopped.^[5]

Treatment

Almost all patients respond positively to antiepileptic (anticonvulsant) drugs. One of the drugs most often mentioned in the literature is carbamazepine, and is the most widely used drug for treating PKD. Other anticonvulsants like valproic acid, phenytoin and clonazepam are common alternatives. Other categories of drugs have also been used, such as dopamine affecting drugs like Levodopa or Tetrabenazine.^[5] Individuals with the disorder can also modify their behavior to lessen their attacks without the influence of drug therapy. For example, decreasing stress to avoid precipitants can help patients decrease the number of attacks. In addition, avoiding any sudden movements can also prevent an attack. In order to prevent an attack, some individuals use their auras as a warning, while others purposefully perform slow gestures or movements prior to a triggering movement.^[2] Many, if not most, individuals end up growing out of the attacks with age, even without medicinal therapy, but some patients will go back to having attacks after a period of remission.^[3] In regards to secondary PKD, treatment of the primary condition can lessen the PKD attacks in those individuals.^[5]

MORE  https://en.wikipedia.org/wiki/Paroxysmal_kinesigenic_choreoathetosis

Please let us know if you doctor thinks this condition might be related to your son's problems.

 

[msimon3]

I recently observed a similar reduction in tics when lying flat.  It's very curious.

[Sutjipto]

Dear Sheila, 

My son who is 18 has similar issues with tics. He will tic frequently (both motor & vocal) in an upright manner & when walking but is quite quiet and still when lying down.

Has the parent whose son is facing similar issues found any solution yet? We are desperate for help too. 

 

Thank you.

 

[Sheila]

Hi Sutjipto,

I will see if I can get in touch with the other parent to ask her.

Question-- what about when your son is sitting down?   

And has your son (or you) ever noticed anything that makes his tics worse besides standing or walking?

Sheila 

 

 

 

[Sutjipto]

Dear Sheila, 

My son who is 18 has similar issues with tics. He will tic frequently (both motor & vocal) in an upright manner & when walking but is quite quiet and still when lying down.

Has the parent whose son is facing similar issues found any solution yet? We are desperate for help too. 

 

Thank you.

 

[Sutjipto]

Hi Sheila,

He tic less when he is sitting down especially when sitting down to watch TV or watching video on his hand phone. Once he stands up, he will start to tic more.

When he is about to eat his meal, he will also tic more.

when he is about to step out of the door to go out, he will also tic more.

We are very puzzled.

 

 

 

[Sheila]

Sorry for the delay Sutjipto.  Have you by any chance been able to have him evaluated by a movement specialist?