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.
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My room-mate Anna, has had grand mall seizures since she was 14 yrs old, and through the past 35 years the medications prescribed to her has little effect and she also has the Vegus nerve implant.
She presently takes Lamictal, Lorazapam and Kepra, and still I don’t think they help her. She has had 1-4 grand mall seizures a month for the last 35 yrs.
I have done extensive research on her problem and finally figured out what was causing her seizures and we have decided that what was causing those seizures is MSG Mono sodium Glutimate, and Aspartame.
We spend a lot of time reading labels on products to keep those products out of her diet and since we removed them from her food, she has only had 2 seizures in the last 2 years.
MSG and Aspartame are added to thousands of products and also MSG is hidden in over 40 products that are added to most processed and packaged foods. We buy almost all Organic food now and I have a list of those hidden sources of MSG on my website, listed under “Hidden sources of MSG”
I think many people are affected by these products and have no Idea that these are causing their problems. MSG and Aspartame are excito toxins and Neurotoxin that have a serious negative effect on the brain of all people, some are greatly effected and some people don’t have any reactions from consuming those toxic chemicals.
After we decided to read all labels and keep her from eating any food with those two chemicals, she has only had two grandmall seizures and it has changed her life so much, and she has a much better memory now.
She remembers many things now about her past and mentions it to me at times, that she had memories of things she had completely forgotten about many years ago.
This discovery has given her a life like a normal person now and it has made it much easier for me also, as I don’t have to keep an eye on her actions so much. Although there are times she makes strange sounds or loud noises I jump up and head to her, and she wonders what I am doing. She never knew of the times I caught her before she would fall out of a chair or just collapse on the floor.
SAo, if someone out there having problems and can’t stop their seizures, try reading labels and stop consuming packaged foods with those toxic products in them. (MSG and Aspartame) They are added to almost all packaged foods, and many Restraunts and Fast food places use MSG in their food, as it is a taste enhancer. It almost always is in soups. You have to ask most places if they use MSG in their food, and they most of the time will tell you.