5 posts tagged “Epilepsy Awareness Month”

Epilepsy Awareness Month: The value in helping others

Posted November 6th, 2015 by

It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy.

Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains:

“I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic tools such as the 72 hour EGG, treatments, triggers and the like. The most beneficial data that I found on this site was learning about epileptologists and more about epilepsy surgery. Prior to finding out about such a specialists, I continued to use the ineffective treatments given to me by general neurologists for 21 years. After doing some more research on the epileptology, I fired my neurologist and went to see the epileptologist in my area, who was able to perform special testing to accurately diagnose and recommend epilepsy surgery for my condition. As a result, I underwent pretesting last year for epilepsy surgery and after successfully passing all pre-test, I had my surgery (Left Temporal Lobectomy) on August 16, 2012 and have been seizure free ever since! My surgery was very successful and the chances of me having seizures again is very unlikely. I’ve made it my passion to share my story and resources with others who are suffering and/or know someone who is suffering from uncontrollable seizures and epilepsy.”

But Letitia is not alone in her experience with other members of the epilepsy community, and there are many PatientsLikeMe members who understand the value in connecting with and learning from others who understand what they’re going through.

 “Being a member of a meaningful team is time well spent. I can still contribute in some way to the greater good. It means that there are still things I need to do and be a part of despite my challenges. For anyone who has an illness or disability, you have to widen your world to help others. That is what ultimately will help you. When I was at my very worst, my husband told me I needed a new hobby. I was in medical offices 2-3 times a week, and now it is once a month. That is progress I can see!” – Becky (Rebelor), also a member of our 2014-2015 Team of Advisors, who is living with epilepsy.

“I joined [PatientsLikeMe] because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me.” – PatientsLikeMe epilepsy member

“I wish I had found [PatientsLikeMe] years ago. It could have been a huge help to me during the worst years. My seizures are now controlled using a mixture of medications. Now I hope to help people who are still in those dark times.” – PatientsLikeMe epilepsy member

Are you living with epilepsy? During the month of November – and year-around – check out what the Epilepsy Foundation is doing to promote epilepsy awareness and help those living with epilepsy.

You can also connect with more than 9,800 others like you on PatientsLikeMe, and share experiences with more than 10,800 others in the epilepsy forum.

Share this post on Twitter and help spread the word.


Get “Seizure Smart” for Epilepsy Awareness Month

Posted November 10th, 2011 by

Click Here to Take the Seven-Question Quiz and Get Your "Seizure Smart" Completion Certificate

What does it mean to be “seizure smart”?  It means being knowledgeable about how to help in the event that someone has a seizure in your presence.  Given that one in 100 Americans has epilepsy – and one in 10 adults will have a seizure sometime during their life – this type of basic seizure first aid could help save someone’s life at work, at a restaurant or just walking down the street.

In honor of Epilepsy Awareness Month, the National Epilepsy Foundation has created a short interactive quiz that helps you become “seizure smart.”  The goal is to get five million Americans to take and distribute the quiz.  Once you’ve gotten “seizure smart,” you can then help raise awareness and proudly post your completion certificate on Facebook for everyone to see.

Got an affinity for posting things on Facebook anyway?  You’re the perfect candidate for the Get Seizure Smart Photo Contest.  Categories include “Funniest or Silliest,” “Most Impactful,” “Best Animal” and more.  All photos must be submitted by November 30th at 3 p.m. EST.  Learn about other Epilepsy Awareness Month activities taking place each day of the month here.

At PatientsLikeMe, we have 4,456 patients who report having epilepsy, with 71% of them female and 29% of them male.  Some of the most commonly reported symptoms include excessive daytime sleepiness, headaches and memory problems, while some of the most commonly reported treatments include Levetiracetam (Keppra), Lamotrigine (Lamictal) and Topiramate (Topamax).  (Click the links for each of these anticonvulsant medications to read hundreds of treatment evaluations submitted by our patients, who share their experiences with dosages, side effects, efficacy, costs and more.)

If you have epilepsy, join our growing community to share treatment data, support and advice with those who can relate.  For everyone else, get “seizure smart” and help make a difference today – and quite possibly in the future.


Epilepsy Awareness Month: The Alternative Way

Posted November 16th, 2010 by

It’s Epilepsy Awareness Month, so let’s continue with our series of blogs about our Epilepsy Community members’ experiences with this disease. Below is an interview with member “akamine2525.”  Earlier this year, she gave the following interview in our monthly newsletter. Want to know what keeps akamine2525 motivated, who she admires and how epilepsy has affected her work life?  Read and share on.

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2166 (Amy) What keeps you motivated?
user_77714-full-original (akamine2525) Throughout the years I have been on many different medications for seizures. I’ve had pretty much all different type of seizures from grand mal to absence seizures. I have had psychogenic seizures due to previous abuse and bipolar disorder due to previous abuse. My doctors at Straub Hospital in Honolulu are the ones I trust the most with my recovery. My current physician, Dr. James Pearce, just recently started me on Keppra, which by far has helped me the most with all of my seizures and my bipolar disorder.
2166 (Amy) Who do you admire and why?
user_77714-full-original (akamine2525) I admire all of the people who try to learn how to control their seizures with alternative ways such as diet, exercise, supplements, herbs, and religious activities if they are religious also helps a lot. It says a lot to me if a person tries to find control of their seizures because it says I really want to make life as easy as possible, not letting limitations get in my way.
2166 (Amy) How has your condition affected your work life?
user_77714-full-original (akamine2525) For a while, seizures and bipolar disorder had a lot to do with work. Because my seizures were so out of control several years ago, it limited the amount that I worked, but when I was able to work, I did more than I could beyond my limits. Today, I don’t work, and I care for my dog, but if I had the opportunity to work again I would consider it.
2166 (Amy) What’s your favorite part of PatientsLikeMe?
user_77714-full-original (akamine2525) My favorite part of PatientsLikeMe is I get to hear from other people who have the same conditions as me and also try to help them to get better with alternative ways besides prescription medication. My goal is to help others to limit their prescription medications if possible and to deal with seizures in other ways.
2166 (Amy) Thanks so much for sharing, akamine2525!

Epilepsy Awareness Month: What do you know about Epilepsy?

Posted November 11th, 2010 by

epilepsyLaunched 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?

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.


Epilepsy Awareness Month: The Beauty and The Turbulence

Posted November 5th, 2010 by

Did you know November is Epilepsy Awareness Month? In honor of the month and to help raise awareness of epilepsy, here is the first in a series of blogs about our Epilepsy Community members’ experiences with this disease. To kick us off, let’s meet tonialpha, a three-star member and PRO who recently sat down with us to give the following interview in our monthly newsletter. Read on to hear more about how tonialpha maintains perspective, passes the time and learns from PatientsLikeMe.

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2166 (Amy) What are you most proud of?
tonialpha_epil-original

(tonialpha) I am most proud of life. Life is environment. It is inside and out! We see the beauty and the turbulence. It is how we see it and take it.

2166 (Amy) How do you maintain perspective?
tonialpha_epil-original (tonialpha) I need to review, review, review, review! My perspective of things sometimes leaves me due to stress, letting things overbear my thoughts and mutter my mind. I need to step back, take a walk or go in the bathroom and read, call a friend, text a friend or look in the dictionary when I am confused. Taking a walk outside helps me, when I am alone and can rationalize.
2166 (Amy) What is your favorite hobby or pastime?
tonialpha_epil-original (tonialpha) Walking and reading.
2166 (Amy) Tell us the most important thing you’ve learned at PatientsLikeMe.
tonialpha_epil-original (tonialpha) I noted stress caused seizure increase, and with less stress, my seizures decreased. My clusters seemed to have relinquished. Also, I have been able to speak to my epileptologist about the frequency easier.
2166 (Amy) Thanks so much for sharing, tonialpha!