Epilepsy Talk

24/7 Epilepsy Foundation Helpline | July 5, 2017

Do you have questions about seizures or epilepsy?

The Epilepsy Foundation’s Helpline is now available 24 hours a day, 7 days a week.

Trained information specialists are now standing by to answer your questions.

Each year more than 14,000 people contact the Helpline. The most common topics include:

  • Treatment options for seizures and other medical concerns
  • Legal issue assistance
  • Seizure safety and first aid assistance
  • Financial assistance
  • Information and materials requests
  • Finding a support group

Accredited information specialists who have more than 70 years of combined experience are available to answer your epilepsy-related questions and to connect you to the best support services.

The Helpline maintains an online database with detailed information on hundreds of national and local resources that support people with epilepsy and their families.

(You can search this database also at: epilepsy.com/epilepsy-seizures-247-helpline-resources.)

Using this comprehensive database, they can quickly find and connect you to the necessary resources. And if you need them to step in and advocate on your behalf, they can do that too.

Whether you are seeking a physician for a second medical opinion, need help paying for medication, are trying to find a support group, need to speak with a lawyer about possible discrimination, or just need to talk, they can help.

And if you want more information, specialists can send you a free educational packet with brochures and fact sheets.

Information specialists also provide follow-up support.

If you are going through a tough time, or having a personal crisis, information specialists are trained to check up on you, with your permission, to see how things are going.

Can they give medical advice?

No.

The Helpline does not provide individual medical advice. It is an information and resource helpline.

However, the specialists can help provide answers or connect you to resources that your health care team may not have.

How do I contact the Helpline?
Call 1-800-332-1000
Spanish (en Espanol) call 1-866-748-8008

Or email: ContactUs@efa.org. Questions submitted online or through email are typically answered the next business day.

To subscribe to Epilepsy Talk and receive the latest articles by email, simply check the box at the bottom of the right column and click on “Follow”

Posted in Epilepsy, Tips
Tags: , , , , , ,

21 Comments »

  1. So many times especially since year 2000, I had called EFA, & CURE both, to find answers for my condition to stop seizures and to make aware of WHAT & HOW seizures can happen at every possibility that seizures can happen. They all told me what I already knew about, nothing new to stop or prevent seizures, and they never cared to put themselves in my shoes and walk the reality as I do. Still the same today if you call them as nothing ever changes with them, unless it is something like MEDICAL MARIJUANA & CBD oils that become ATM machines for neurologists & the drug industry. WE are always LAST on their list to provide help with a cure for seizures. They all approve that we are their rats or guinea pigs for the drug industries, NIH & others that uses OUR BRAINS as toys they can play with. BEEN THERE< DONE THAT,, and no more will that ever happen again unless I do it ALONE with out any of their approval. A few months ago CURE was going to send me emails for future studies & etc… NO emails have ever come in my inbox, as I did that same thing over 3 years ago with the same results. None of them care about us. WE"RE ONLY A NUMBER and AN OBJECT TO THEM ALL. As showing respect towards them,, remember THEY KNOW we have seizures, and to THEM,, we are different than the rest of THEIR world. Answer this,, WHY doesn't all & every 1 of the 50 states all have a SEIZURE SUPPORT GROUP in the state people live in ? I have to drive or someone take me to a Maryland or Virginia EFA group or whatever, & then you are well listened to or REJECTED based on what you say, & HOW the words you say can or will hurt the egos of others who have seizures, as the FEAR of everyone having a seizure that you know effects you, should not be TALKED ABOUT. Really ? So all people do eat foods, and diets & food chemicals NEVER needs to be discussed at group settings from EFA where i was told not to say more of what I was talking about when I only said 20% of the 100% I needed to ask others & say about to the EFA leaders. Nope I had NO RIGHT to make others think what could be happening to their brain as maybe we ALL may have had something in common. 2011 was my last public meeting with people who have seizures. Not my loss.

    Liked by 1 person

    Comment by C D — July 5, 2017 @ 4:02 PM

    Reply

  2. I also tried to get help at least a month ago at EFA for their RARE EPILEPSY support, and never got to speak to a single person there. It will still be that way today if I called them and end up speaking to nobody. That is suppose to be a support service for people who are really in need for an answer & HELP ? They do not care if it is 56 years or 56 minutes that a person has seizures, and nobody gets back to you or cares to offer any answer for your desires to be seizure free or lowering the number of them, or seeing any different doctor who may know more than who you’re seeing now.

    Liked by 1 person

    Comment by C D — July 5, 2017 @ 4:07 PM

    Reply

  3. I disagree about the doctor part, C D.

    I’ve known my Philadelphia Epilepsy Foundation chapter to recommend specific doctors, particularly from Jefferson.

    Like

    Comment by Phylis Feiner Johnson — July 5, 2017 @ 4:13 PM

    Reply

  4. My daughter, aged 34, is scheduled for bariatric surgery, a gastric sleeve in 2 weeks. She has been told that people who are overweight often see a decrease in seizures after this surgery, and sometimes can discontinue seizure medications. Have you heard this information to be true?

    Liked by 1 person

    Comment by Betty Turner — July 5, 2017 @ 11:04 PM

    Reply

  5. Reblogged this on catsissie.

    Like

    Comment by catsissie — July 17, 2017 @ 10:14 PM

    Reply

  6. My name is matt lily I live in Canada

    I had seizure disorder that started when I was 21, I’m now 36. I took medicines for over 15 years, I had grand mal seizures I’ve tried many anticonvulsants and had never been able to stop the seizures. Surgery was not an option. My seizures worsened as I aged. Yet, my life has been dramatically impacted by seizure For years, I went from Doctor to many Neurologists to an Epileptologist trying to find a cause and cure for my seizures. I tried every medication and dosage imaginable but nothing seemed to work. I read a testimony about someone on the website (http://seizurestory.blogspot.com/2008/10/seizure-free.html) on who she was cured from seizure through herbal medicine. I contacted the doctor, and used his herbal medicine for mouths, my seizure became a story. Today, I am totally free from seizures after years of struggle.

    Liked by 1 person

    Comment by lily — September 30, 2017 @ 3:28 PM

    Reply

  7. I had an epileptic fit for the first time 5 years ago in the middle of supermarket on my birthday of all days, wasn’t fun for my kids to see it, it still haunts, I’ve tried many anticonvulsants and had never been able to stop the seizures. Surgery was not an option. I was still an epileptic patient, who have completely lose hope. As the problem is always embarrassing and disturbing. While surfing the internet one fateful day, I learned about Doctor Lawson on the internet. I contacted him with some info and I ordered for the Herbal medication and used the medicine for 5 months, though hesitantly, considering the fact that I have done a lot of procedure. After which I went for medical test It worked! I’ve been seizure free, Over a year now, I have not show any symptoms of seizure and I believe I am cure.

    Liked by 1 person

    Comment by amber167 — October 4, 2017 @ 6:21 PM

    Reply

  8. My son started having seizures he had his first seizure at 6 year within 12 hours We spent 6 days in the hospital where different doctors looking at different things couldn’t agree on why he suffered a seizure… He has had genetic tests including a muscle biopsy. I used to wonder why my son were getting so many vaccinations shots at such a young age, Still the doctors wouldn’t admit it was the vaccination shots. After his 2nd seizure I wouldn’t allow my son to be vaccinated anymore but I believe the damage is done. It was during a casual conversation with a friend that I learned about Doctor Lawson Bryan i was so glad to know him on how his herbal product work, I contacted Lawson and explain everything to him and make purchase of his product. few days later i received the herbal medicine my son used it for 3 mouths i notice improvement in less than a month my son was totally cured of seizure now he have not experience any sign of seizure. Contact doctor Lawson Bryan on this + 1 (979) 475-5130 or e-mail dr.lawson52 @gmail .com.

    Liked by 1 person

    Comment by Nancy — October 20, 2017 @ 8:55 AM

    Reply

  9. I have taken 400mg Dilantin and 97.2mg phenobarbital since age 5 and no seizures until I was taken off in 1985 and had 2 in 1 month. put back on it. however jan22nd I had a grand mal due to skipping doses due to critically ill parents. neurologists added 500mg generic keppra but wants to slowly wane me off Dilantin. does generic Dilantin work as well or just stick with generic keppra and brand name phenobarbital to avoid possible sudden death in patients taking more than 2 seizure meds. what other options

    Like

    Comment by Charles Feezell — February 27, 2018 @ 11:28 PM

    Reply

    • Charles, I’m sorry I can’t answer your question. But I’m not a doc or know enough to compare drugs and their outcomes.

      Every person is an individual with their own chemistry.

      As far as generics, they are comprised of 80% of the original formulary and 20% of unknown “filler”. So name brand is best, if you can get it.

      Like

      Comment by Phylis Feiner Johnson — February 28, 2018 @ 4:29 AM

      Reply

      • The generic medicine works just as well. It is the same thing but without the company’s name as an advertisement. I’m on way more than 2 anti-epileptic drugs. I wish I was only on 2 again. I’m sitting in a wheelchair, near my walker, and with a helmet on my head because I fell about a week ago. Wow, I remember those days. One medication then 2. I’m happy for you. Seize the Day!

        Liked by 1 person

        Comment by Kristin — May 7, 2021 @ 6:04 PM

      • Actually, the generic has 80% of the original manufacturer’s formulary in it and 20% unknown filler. Either way, I’m happy that it works for you. But, I’m so sorry to learn of your fall. It sounds like it was a doozy.

        Like

        Comment by Phylis Feiner Johnson — May 8, 2021 @ 8:54 AM

  10. I would like to know more about epilepsy and the herbs to reduce it or heal it.

    Liked by 1 person

    Comment by Simon Chauke — July 9, 2018 @ 6:12 AM

    Reply

Leave a comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.

    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

    To receive Epilepsy Talk articles FREE, simply go to the bottom of the right column, enter your email address and click on \"Follow\"

    Join 3,259 other subscribers
    Follow Epilepsy Talk on WordPress.com