Epilepsy Foundation

Helping Others Get Seizure Smart

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Helping Others Get Seizure Smart

Tell Us how you plan to help others get seizure smart. We'd love to hear ideas!

Website: http://www.getseizuresmart.org
Members: 296
Latest Activity: Nov 25

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Comment by Robert William on November 25, 2014 at 1:03pm

Hello Everyone - My name is Gail & my oldest has had seizures (grand-mal) since 11 years old now. Many years ago his seizures

were totally out of control with seizures happening close to every

day & early mornings.  His doctor had recommended that he get the VNS he did - he has been great ever since - No seizures & still needs medications.

Comment by Sam Inglese on November 25, 2014 at 11:29am

Hello. I can get people first seizure interested and then seizure smart. I am a striving documentary filmmaker with uncontrolled seizures since age 18. Last one was a week ago. My lover has them more often than I with an intriguing fact. Her Stress Seizures and Auras prior to Complex an Partial ones can often be broken with PAIN!  She will signal me with her arms and hands as to what state she is in. Whether she needs distance and quiet, noise, or a specific type of pain to break it before she becomes completely unaware and out of control. She taught me a "1-10" system of best informing the other of our present status physically, emotionally and mentally defining the present risk of a seizure in anywhere from the next 60 seconds to 8 hours. I need a camera with the minimum number of Pixels required by the media industry today along with quality audio and a tripod to be able to immediately set and record her seizure and my assisting her at our apartment and to carry with me when we travel outside the home. We go biking almost daily. Most travel by bus. Fishing, shopping, hiking.... This footage with interviews about her full life with seizures, surgery, VNS and over 12 different meds will be a great asset in creating the video to assist in finding the funds necessary to film other people talking about their most memorable seizure in public. Do you know of a used one, have one to donate or are willing to donate funds necessary? My seizures have reached a point forcing me to go on Disability so I do not have the money. Want more info? e-mail ambimind65@yahoo.com

Comment by Julie Gianferrara on November 5, 2014 at 10:05am

I also would like to speak on generic medications vs brand name. I had many grand mal breakthroughs when switched from one generic manufacturer to another. I ended up having my cervical spine fused on 2 levels and rotator cuff repair. I was then switched to the brand name Klonopin, which I had never used and found out first hand the huge difference, for me at least, in seizure control and side effects. I have also switched from generic Lamictal to the brand name and I found issues with the side effects much more tolerable. Therefore, I am NOT an advocate for the manufacturing of generic medications which affect the CNS. I have done my own research and there are studies which support that this may not be a wise choice. Variances of the active ingredient are allowed which can affect the blood levels needed for control, the manufacturing process and fillers can alter the metabolic absorption and thus further decrease efficacy. If anyone can put me in touch with a group that is interested or involved in this cause please contact me. If you can expand on my comment please do so for my own knowledge. I have run into issues with name brands being manufactured. Roche was just recently put on hold for manufacturing Klonopin. I had to use Teva brand. I had several small breakthroughs, one grand mal, and severe depression. It is back in manufacturing now, available to wholesalers, and hitting the shelves where I live so I am restored. lol This is why I am actively seeking seizure control through other modalities and encouraging and supporting technological research which I believe will eventually, maybe not in my lifetime, be the mainstay of seizure control. That is if funding is adequately provided and political agendas from the fall out if medications eventually take a backseat to treatment do no interfere. Thanks!

Comment by Amy on November 5, 2014 at 9:59am
I've heard of transcutaneous VNS (t-VNS is someone's trademark I think), sounds possibly the same or very comparible. Not available in US yet. So if someone knows the status of that, I'm curious.
Comment by Julie Gianferrara on November 5, 2014 at 9:48am

I would like to ask if anyone has updated information on a new modality used to treat epilepsy.  It's called the eTNS. I have met a person who has this device, which is used externally vs the implanted devices such as VNS, and she has had wonderful success. I need to ask how she obtained it because it is in stage 3 clinical trials right now so rubber is hitting the road and we will see if it makes it to the runway. So many medications and treatment modalities do not. I assume this person was probably in a clinical trial or she may have gone outside the US to obtain it. I may be wrong but from what I understand the units are available in Europe, which is where I will go if research leads me to believe this is would be highly advantageous for my treatment.

Comment by Tammi Zavardino on September 15, 2014 at 5:36pm

I haven't been on here for a while but not to step on any toes when I lived in Florida they did not see Epilepsy as a disability so I couldn't get any medical assistance and my husband left me because of it. But we can do things to make life better if we want to and I wasn't going to let it defeat me so I do a lot of volunteer work with the Epilepsy foundation in my state and on-line and have been very helpful to many people yet the question still lies in the back of my head and always will as to why any of us has to put up with this problem.

Comment by Kay Irving Kramer on August 14, 2014 at 4:08pm

Pam, there are a couple of things I have to disagree with. First, the ADA does class epilepsy as a disability.  However, the ADA was not signed into law by President Bush until 1996, because I was a 3 year member of The Employer Committee of The President's Committee on Employment of People with Disabilities a year after its signing.  I knew Tony Coelho (the California congressman who brought the law to the house, well) he too had epilepsy.

Secondly, epilepsy is noted as 'temporary' in that "it is only a problem if or when a seizure happens; which means that if your meds and treatment control it, it's controlled."  But it is not with you 24/7 like people afflicted with MS, MD, Polio or other disabilities that are with you every minute of every day.

Comment by Pam Sullens on August 14, 2014 at 2:40pm

Epilepsy is considered a disability under the ADA law. It became effective 2008. I've enclosed the link. So-under the law-and through countless lobbying, we with seizures can apply for assistance- We do have rights-Seizures are not temporary -they are life time and can cause death due to SUDEP. Being grateful has nothing to do with things-People with seizures DO live with this disorder-deal with it 24/7! I do not understand. Yes-people with seizures have to life life to their fullest and being proactive and knowledgeable regarding-After having them for 47 years- I never felt like I was disabled-I knew I had a disorder-Seizures can be disabling-that should not affect those who have it in a negative way-By telling someone to "just deal with what they've been dealt" or something similar-does not in my opinion-help those of us who are dealing with issues regarding E. -MS-is also a neurological disorder that-like a seizure disorders has to be faced on a daily basis. I am not an expert-anyway-here's that link about the ADA Act regarding E.  Hope this clears things up.www.eeoc.gov/laws/types/epilepsy.cfm - Blessings, Pam

Comment by Kristy Daniells on August 14, 2014 at 12:38pm

Thank you, Kay!  I've made remarks & comments similar but I tread lightly because I know this is hard for her, so I try to respect her emotions.  I'll try a more firm approach. 

Comment by Kay Irving Kramer on August 14, 2014 at 12:04pm

As I have said to others from my own experiences in National, State and Local disability circles.  She has come to experience this as have you.  Now, put it to her as forcefully and friendly as possible "be grateful and understanding that seizures and epilepsy are temporary disabilities.  In that they happen and then most of the time are gone.  Be appreciative that your disability is not one like polio, MS, MD, Cancer, etc. that you have to face and live with 24/7.  I know it's hard, but you have to open up, enjoy life within your means, as well as your friends.

 

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