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: 293
Latest Activity: Oct 7

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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.

Comment by Kristy Daniells on August 14, 2014 at 11:44am

I have a partner (38 years old) whom I've been with for 10 years, & she has seizures.  When we began dating, she told me about her 'passing out' spells.  It wasn't until she had a spell that I knew it was more than that.  She had no idea that what she was having were seizures.  She grew up extremely poor, never had been to a doctor, & was a very private child/teenager.  She remembers having a few spells while in school & when playing outside, but it seems no one was ever around to notice what was going on.  She has the auras so when she felt them coming on, she would lock herself in the bathroom.  Sometimes she can cool herself off & calm herself down to where she doesn't go in to a full blown seizure - but many times she is not successful.  It wasn't until August 2013 that I made her go to the doctor.  She was started on Keppra but it caused her to be very angry, then depressed.  They changed her to Lamictal but that didn't seem to help any.  She was having several 'break throughs'.  The doctor eventually had her stop all medications - cold turkey - so she could do an EEG.  After some disappointments with her doctor, we have since changed (just recently) and she is now on Topamax.  The new doctor is 'new' and will not confirm her seizures or if they are epilepsy related until he does his own EEG.  We are set up to do another one at the end of this month. 

The Topamax seems to be working though.  Her 1st EEG showed 'sharp waves' during sleep to the left temporal lobe - which possibly explains her memory loss and emotional/anger outburst.  For someone who does nothing but complain about having to change their life (no smoking - no alcohol), she wants everyone to pitty her but does not understand the extent of what she puts her support system though.

Any help - advise - y'all can give would be much appreciated.

Comment by Tammi Zavardino on May 3, 2014 at 1:05am

Lauren are you on a generic of Keppra? A lot of times people have trouble on the generics because they are not all the same and if its from a different company you may not be getting the same thing you were before that is what is happening with many meds and you have to be very careful and watch carefully I wish you the best.

Comment by Lauren Fulks on April 25, 2014 at 9:57am

I am a new member, and just joined this group.  I was reading some of the success stories, and wanted to share mine.  I had seizures starting at age 14, until age 35.  When I was 35, I underwent testing to see if I was a candidate for braining surgery, and I was.  The surgery was successful.  I have not had a grande mal seizure in almost 17 years, totally changed my life.

I am still on maintenance anti-convulsants, Keppra; I was reading some of the negative side effects some of you are experiencing, post surgery, from Lamictal.  I was on Lamictal for many years as well (and Tegretol, Depakote, Dilantin, Depakene); the side effects of Keppra are much less

Comment by Tammi Zavardino on February 18, 2014 at 11:21pm

Debbie the VNS surgery is a device that is hooked up to the vagus nerve in your neck and in your chest it is run by batteries and the settings can be changed by your doctor until they find the setting that will work to control your seizure activity. It has become very famous and works well with most that have it. And is usually something that is considered when medicines don't do the trick. I have found it to be very benificial although I still have to take a few medicines it was worth trying. Because I am now almost seizure free.

Comment by debbie john on February 18, 2014 at 10:08am

hi tammy. I guess I don't know what the vns surgery does. but good luck on the future

 

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