10 posts tagged “seizures”

Epilepsy “Rescue Medication” Survey results are in

Posted September 13th, 2013 by

PatientsLikeMe recently partnered with Acorda® Therapeutics to research how epilepsy patients respond to seizures using rescue medications, and we’re happy to announce that the results are in. Rescue meds are a type of medication used once a seizure starts to help end it faster or prevent further seizures.

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Has there been any 24-hour period in the last 12 months when you experienced multiple seizures, despite taking your daily anti- seizure medication?

 

We’d like to thank the more than 500 PatientsLikeMe epilepsy members who participated in the survey and got us to our community goal for the study. And as promised for reaching our goal, we’ve donated $2,500 to the Epilepsy Foundation for further research.

At PatientsLikeMe, we know every piece of data, no matter how small, helps paint a better picture of what it’s like to live with a condition like epilepsy. Your contribution will help other patients learn more all while advancing medical research. Thanks for your contribution.

Click here to download the complete survey results.


Join the “Now I Know” Video Campaign for National Epilepsy Awareness Month

Posted November 15th, 2012 by

“Today [my son] Jake is living a wonderful life, an extraordinary life, and now I know that’s possible.  When Jake was first diagnosed, we didn’t know that.  Now I know that…and that we’re not alone.”

Actor Greg Grunberg, father of a 16-year-old with epilepsy

Join the "Now I Know" Campaign by Submitting a Video About What You've Learned

When it comes to epilepsy, what do you know now that you wish you knew sooner?

That’s the question the Epilepsy Foundation is asking epilepsy patients and their families to ponder during National Epilepsy Awareness Month, which takes place every November. Share your struggles and successes in a video submission to the “Now I Know” campaign. Visitors to Epilepsy Foundation’s Facebook page will then have to the opportunity to vote on their favorites and share top videos with their social networks.  Ultimately, the top vote getters in each of four regions will win iPads and other prizes.

Affecting more than two million Americans, epilepsy is defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.”  When a person has two or more unprovoked seizures – brief, strong surges of electrical activity affecting part or all of the brain that last anywhere from a few seconds to a few minutes – they are typically considered to have epilepsy.  Symptoms can range from convulsions and loss of consciousness to more subtle signs, such as lip smacking, blank stares and jerking movements in the arms and legs.

A Snapshot of the Epilepsy Community at PatientsLikeMe

More than 7,000 PatientsLikeMe members are sharing their experiences with epilepsy, including their symptoms, treatments and more.  Using our Seizure Meter, members are also able to record their seizure history, including the type of seizure (e.g. clonic seizure, complex partial seizure, tonic-clonic seizure).  What are our members taking to control their epilepsy – and how well is it working?  Check out the hundreds of treatment evaluations submitted for common medications such as Keppra, Lamictal and Topamax and learn from others like you today.