JME Question: Why is she jerking her arms & hands?

@jessicarivera00602
About 50% of people with epilepsy never know the cause so it's not that unusual to have normal test results.
When your daughter was salivating, her myoclonic jerks may have advanced to a Tonic (stiffening) seizure. It might be a good idea whenever she has the jerks to go somewhere safe as the jerks may be a precursor to a more serious seizure.
Many people with JME also have Tonic-Clonic seizures.
What time of day does she usually have the jerks?
take care,
Jake

@lisalucier Thank you for answering. She had an event where her hands were jumping at the Orlando airport, which culminated in colvulsion. This has never happened to her before. She's an athlete, healthy, a normal young woman. She's never suffered from anything. That day, they performed a CT scan and lab tests. Upon returning to Puerto Rico, I performed an MRI, EEG, and genetic testing. Everything came back fine. I have no justification. Two weeks ago, last night, she choked, and when I looked at her, she was sitting with stiff hands and salivating. They started her on preventative Keppra. But the reality is that there's no test to tell me what she has, and I'm very worried.

Hi @jessicarivera00602 - welcome to Mayo Clinic Connect. My understanding from what you posted is that your teenage daughter has myoclonic epilepsy.

If you've not read it already, you might check out this Mayo Clinic resource on epilepsy, which also talks about myoclonic epilepsy in particular:

- Epilepsy https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093

Two additional sources you might look into are:

- Google Scholar: Just type "juvenile myoclonic epilepsy" or similar into your browser, and it will take you to this database. You can type in keywords and filter as you wish to read published studies on juvenile myoclonic epilepsy.

- ClinicalTrials.gov: a website by the U.S. National Institutes of Health where you might find clinical trials based in the U.S. about juvenile myoclonic epilepsy.

You are saying she has not tested positive on any of the tests she's been given thus far? What tests has your daughter undergone?

Hi, my dougter 15 years old beggin with "myoclonic epylepsia" All the test ar clear and i want to search some MD that make studies or read that all ready have. Im from PR but I can flight to other place to make studies.
Thanks
Jessica Rivera

@cwalt6252
Welcome to Mayo Clinic Connect.
I'm sorry to learn of your daughter's Juvenile Myoclonic Epilepsy diagnosis. Epilepsy can be a challenge. I've had it for 54 years. May I ask how long she's been having seizures and what types of seizures?
I assume your daughter has been through the usual tests for Epilepsy, Blood, MRI & EEG. Were those tests normal? Brain lessons are often a cause of Myoclonicic jerks, hopefully her MRI was clear.
You might ask the Neurologist about an adjunctive medication, Valproic acid and/or Keppra as possible treatments. Like Lactimal they too are Broad Spectrum Anticonvulsants.
I would venture to say that sleep deprivation and fatigue can be causes of Myoclonic activity as well as a trigger for other seizures. What time of the day is she having the Myoclonic jerks?
Stress also can increase the likelihood of seizures as well as Anxiety and/or Depression. Also, Anxiety and/Depression can decrease the effectiveness of seizure medications in some studies.
Although this may not be common, in a study from Stanford University Medical Center, and other researchers also found this to be true, a person should not change from a Brand to a Generic drug or vs versa. Additionally, the same medication manufacturer should always be used. I am very susceptible to this. Sometimes a person does better on an extended-release version of their medicine since the serum level in the blood remains more stable.
I wish your family the very best.
Take care,
Jake

It could very well be that the Lamotrigine isn’t at the right level in her body. Has she had blood work lately? If not ask for a Lamotrigine level, that where my daughters doctor always starts. Hope this helps!!! As your daughters body hormones adjust so does the chemistry in her body which maybe that the level it was at is not the right level anymore.

Thank you for replying. We have spoken to the doctor about it November and he increased her meds. The jerking has started again but we haven’t reached out the doctor yet. I wanted to see if this is normal or if I should reach out to the doctor. We are still new to all of this. Thanks.

Hello @cwalt6252 and welcome to Mayo Clinic Connect. I understand you are looking to connect with others who have experience with JME to help you better understand your daughter's recent and new jerking symptom.

I can see that @kerivb has already joined the discussion and shared he experience with her daughter and would also like to include members @jakedduck1 @lpate to see if they might be able to provide some additional information based on their experience.

Have you reached out to her doctor to share this change?

My daughter was diagnosed with JME when she was 15. She started having jerks way before her breakthrough seizure. We didn’t know about the jerks until her 2nd seizure/JME diagnosis. She is on 1500 mg of Keppra XR twice daily and 500 mg of LamotrigineXR (due to birth control) daily 200mg AM & 300 mg PM. She is now 20. My advice would be talk to her neurologist and explain what you are seeing.