Launched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients. In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community.
Did you know…
- You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
- You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
- Others in the community have indicated a causative comorbidity for their condition, such as:
- Head injury (242 patients to date)
- Brain tumor (70 patients to date)
- Stroke (38 patients to date)
- Encephalitis (34 patients to date)
- 543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
- Nearly 500 patients have completed the first in a series of surveys that measure their mental, physical and social well-being. (See “Manage your epilepsy like a PRO”)
- As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).
How are our members treating their condition?
- Patients are using thousands of treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, procedures, and more.
- The top procedure reported by our patients is vagus nerve stimulation (VNS).
- The most widely used prescription drugs reported by members are Levetiracetam (Keppra, Keppra XR), Lamotrigine (Lamictal, Lamictal XR) and Topiramate (Topamax, Topamax Sprinkle); the top 3 supplements are Folic Acid, Calcium plus Vitamin D, and Multivitamins.
What are their major symptoms?
- The 5 most common symptoms reported include: Memory problems, problems concentrating, fatigue, excessive daytime sleepiness (somnolence) and depressed mood.
What are they talking about?
- Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Keppra, Lamictal, Vimpat and Topamax), as well as seizures, seizure triggers, driving, and doctors.
- Members share a lot about their experiences switching medications and managing side effects.
- Members motivate each other to make the most out of their doctor visits by encouraging you to ask certain questions and be proactive in seeking care.
What else do you know? Learn and share with PatientsLikeMe today.