Epilepsy Talk

New Epilepsy Diagnosis — Now What? | April 30, 2012

You’re scared. Who wouldn’t be? The docs. There are lots of terrific ones. The tests. They can actually help to correctly diagnose your epilepsy. I’ll die. Not very likely. My life is over. No, it’s not, but it will change…

And although you’ll come up against plenty of myths like “epilepsy is catching.” (Geeze!)  People with epilepsy are “challenged” and you shouldn’t expect much from them. (Wrong.)

Some of the greatest people in history had epilepsy. It didn’t stop them and it shouldn’t stop you.

Imagine how different our world would be if these people threw in the towel. Alexander the Great, Aristotle, Alfred Lord Tennyson, Van Gogh, Charles Dickens, Emily Dickinson, Lewis Carroll, Theodore Roosevelt, Bud Abbott, Richardson Burton, Prince, Margaux Hemingway, Neil Young, David Hockney, Duke Ellington, plus a host of sports figures and others.

And then there’s me. I’m not great or famous, but I have had epilepsy for decades. When I was first diagnosed as a teen, no one knew what to do with me. My parents refused to use the “E” word. People treated me like I was some kind of pariah. I was cheerfully told I “would never amount to anything.” They wouldn’t even pay for college! 

But here I am. A successful writer for more than 35 years with my own freelance business, wonderful friends, a terrific husband. I refused to believe them. My life was not over. (Or maybe I just wanted to prove how wrong they were.) 

Yes, it took time. To learn, adjust, and adapt. But the biggest lesson was to use my own strengths to come to terms with this new lifestyle and cope.

FACT: You can either become a victim of epilepsy and let epilepsy take over your life. Or you can simply say, “I have epilepsy” and decide your own fate.

Here are my steps for “beginners”…and maybe all of us!

Step #1: Get a great neurologist. One you’re comfortable with and one who can answer your questions. In English. No mumbo-jumbo. If you’re not comfortable with the first one, move on. Or get a second opinion. Keep looking. There are plenty of good neurologists out there and there’s no reason to settle. After all, this is your brain we’re talking about!

Step #2: Get an accurate diagnosis. This will help define what kind of epilepsy you have (yes, there’s a myriad of different types of epilepsy) and diagnostic testing will better target what meds you should try.

Note: There are a lot of new medicines out there. That makes the options both better and more confusing. The first drug may or may not work. You may need another drug or a different combination. Everybody is different and we each have our own chemistry. So what works for one person may not be the answer for you. Be patient and give your doc a chance. (I kissed many frogs before I found my “magical medicine mix!”)

Step # 3: Keep a daily seizure diary. Keep track of your sleeping patterns. What you eat and when. Daily activities (including stress.) Seizures themselves. How you feel before a seizure. Triggers? Auras? Length of seizures, if you know. How you feel afterwards. This will help both you and your neurologist better figure out what’s going on with you.

Step #4: Educate yourself and your family and friends. This will help them understand and alleviate THEIR fears. A wonderful source of knowledge is at http://www.epilepsy.com. At the top are drop down menus in blue. Go to the second one on the left (About Epilepsy) And you’ll find a treasure trove of information.

Step #5: Spread the word about first aid. It will help handle the fear of others who undoubtedly feel helpless not knowing what to do if you have a seizure. And it will help them help you as well as help them understand that they CAN do something about a seizure.

People want to help. Just give them the chance.

Step #6: Talk about it! I can’t even begin to stress how important this is! Share your epilepsy and feelings with your family and friends. Also teachers, employers, colleagues. The more people hear about epilepsy, the more they’ll know and understand.

Prejudice is born of ignorance.

Also join on-line forums and, if you can, local support groups. Find out what other people have done and what they’re going through. Believe me, you can learn from them and vice-versa. (I know I have. And the learning doesn’t stop. Or the support and caring.)

Step #7: Don’t give up! Think of epilepsy as a hurdle, not a death sentence. Life is too short for pity parties, anger, or denial.  Give yourself time, and give others time, too. Sure you’re probably scared. But so are they. They may shy away from you, because they don’t know what to do. Or they’ll embrace you, because you’re really still the same person, but you happen to have epilepsy.

There’s a whole community of compassion and caring out there. Just reach out.

Life goes on. And so will yours.

Some food for thought:

2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

https://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/

2012 Best Neurology & Neurosurgery Hospitals in the U.S.

https://epilepsytalk.com/2010/02/23/best-neurology-neurosurgery-hospitals-in-the-u-s/

Beyond EEGs…Diagnostic Tools for Epilepsy

https://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

Conditions Commonly Misdiagnosed as Epilepsy

https://epilepsytalk.com/2010/02/17/conditions-commonly-misdiagnosed-as-epilepsy/

Common Epilepsy Triggers

https://epilepsytalk.com/2010/03/02/common-epilepsy-triggers/

Epilepsy Foundation – First Aid

http://www.epilepsyfoundation.org/resources/medical/firstaid.cfm

The Stats and Facts of Epilepsy

https://epilepsytalk.com/2009/12/14/the-stats-and-facts-of-epilepsy/

25 Best Epilepsy Books for People of All Ages

https://epilepsytalk.com/2011/04/30/25-best-epilepsy-books-for-people-of-all-ages/

12 Recipes for Happiness – Even If You Have Epilepsy!

https://epilepsytalk.com/2012/03/20/12-recipes-for-happiness-even-if-you-have-epilepsy/

Websites – Forums

Epilepsy Talk

www.epilepsytalk.com

Epilepsy.com Community Forums

http://my.epilepsy.com/forum?CMP=ILC-SHRT

Coping With Epilepsy Forum

http://www.coping-with-epilepsy.com/

Epilepsy Foundation Forum

http://epilepsyfoundation.ning.com/forum


14 Comments »

  1. You have offered some great steps to help people get started on this journey. Isn’t it sad how many myths still remain about epilepsy? I get frustrated with these, but at least most people are still willing to learn and seek information. Thank you for providing this information for us. 🙂

    Like

    Comment by FindingStrengthToStandAgain — May 1, 2012 @ 7:04 PM

  2. If you think these myths are sad, go to: Epilepsy Myths Live On…

    https://epilepsytalk.com/2009/09/08/epilepsy-myths-live-on%e2%80%a6/ 😦

    Like

    Comment by Phylis Feiner Johnson — May 1, 2012 @ 7:08 PM

  3. Phylis,

    KNOWING NOTHING about Epilepsy, I refused to believe I was having seizures, while I kept waking up in hospital emergency rooms, sometimes with my face torn-apart.

    There was times I got out Ambulance, that was supposed to take me to hospital, telling people,,,

    HOW DARE COULD YOU TAKE ME FOR ANYTHING MORE THAN I ALWAYS HAVE BEEN, healthy & productive member of the society.

    To the shock of ER Physician, many times I jumped of the hospital ER bed, walked out of the hospital, cursing who ever brought me to the hospital.

    But, when the employer I worked for 25yrs INSISTED I got to have “DOCTOR’S PAPERS” to keep the same job I had for most of my life, I was very ANGRY & BITTER at my employer for questioning my INTEGRITY, but I had no other choice, except to satisfy my employer’s demands to keep my job.

    SURE, NO PROBLEM, TWO WEEKS OF MEDICAL LEAVE, CHECK WITH STANFORD UNIVERSITY NEUROLOGY DEPARTMENT FOR MRI & EEG TESTS, (until then never heard of MRI or EEG test).

    Surprise, surprise,,, TWO GRAND MAL SEIZURES in less than a week on DVD, MRI & EEG recorded.

    THREE Doctors walking together coming to my room,

    -OK, Sir we are going to send you home today, but sir,
    – you have had two grand mal seizures since you have been here (10 days) &,
    – this is how your grand mal seizures looks like on DVD & this DVD is your copy &,
    – take these medications to control your seizures,
    – we will call you for a follow up”.
    Thank you,,, Bye.

    Watching myself having grand mal seizures on VIDEO,,, you can NEVER imagine the helplessness, anguish, anger, confusion, bitterness,,, & asking,

    “HOW DID I GOT THIS & WHAT DO I DO NOW”?

    Losing the job for uncontrolled seizure, losing driver license, losing the joy with life-time friends (desperately trying to cover up-epilepsy), losing a lot followed.

    But,,, Thanks to ALL OF YOU ON THIS SITE, learning from YOU, the same people who live in my shoe, I learned to ACCEPT EPILEPSY, made life a whole lot better than when I FIRST started with Epilepsy.

    SALUTE TO ALL OF YOU.
    Thank you.

    Like

    Comment by Gerrie — May 2, 2012 @ 12:18 AM

  4. Gerrie, Were’re all here to help you with the facts, compassion and caring.

    Denial is natural. I think it’s the first step of any scary diagnosis.

    But, with help, you saw the light (no pun intended) and began to adapt and make a new life. GOOD FOR YOU!

    Like

    Comment by Phylis Feiner Johnson — May 2, 2012 @ 4:05 PM

  5. Phylis- re step #4, educate yourself. Could you please answer something that’s been bugging me for years?
    I’m not American and I read/participate in epilespy sites from around the English speaking countries. My observation is that for some reason Americans have not been able to update their seizure terminology- “grand mal” and “petit mal” are still commonly used, and a lot of people seem ignorant of tonic clonic, absense, and focal (the latest name change of partials). I’ve often asked people in chat rooms about this and a frequent reply seems to be “well that’s what my doctor calls them.” or “well that’s what they wer called when I was dxd.” That was the terminology when I was dxd 25yrs ago, but I haven’t heard “grand mal” from any doctor for at least 10yrs, and while it took a bit of practice it wasn’t that hard to learn the new terminology. I have rarely seen the old terms used in forums and chatrooms outside of the US. The US main Ep websites use the correct terminology, so why is this not translating to many of those who have ep?

    This isn’t nit-picking, but I’d really like to know if it is a case of doctors being too lazy to update themselves and therefore not giving the correct info to the patients, or what? I fully agree education for ourselves and others is vital, so how can that properly happen if something that basic isn’t changed?

    Like

    Comment by katie — May 8, 2012 @ 6:55 AM

  6. Thanks Phylis. Good point about wondering how many docs bothering to read up on sz types, but surely neuros at least would have to know them??

    With regards to people feeling comfortable with the old terms, to a degree I can understand that with people dxd decades ago, (old habits die hard) but newly diagnosed?

    My big concern is around the use of “petit mal.” As you no doubt know that was the coverall term for almost everything that wasn’t a grand mal, ie convulsion. I’ve often asked people in chat rooms do they mean absenses , simple partials/focals, or something else, and the scarey thing is many haven’t got a clue! In the few lay books I had access to in my early years of E, knowing one’s sz types was strongly emphasised- you have to be able to say what TYPE of szs you have, especially when that info is very important, eg for safety or when needing medical/dental treatment. And of course the names and doses of your drugs (I’m still shocked how many people don’t seem to know this). A simple solution to remembering this is to have it all written down and carry it with you.

    I know a new dxd is a lot to take in and is totally life-changing, and there’s loads you have to figure out, and there’s often a degree of denial going on which is perfectly understandable. but it really bugs me that so many people don’t seem to be getting the accurate info from docs. Do the medical/neurological fraternity need reminders sent to them? I don’t know if the US ep organisations produce pamphlets that can be left in doctors offices?

    Apologies if I’m sounding like I’m preaching, but I do feel strongly about this even though some may see it as petty. Thanks for the opportunity to discuss this 🙂

    katie

    Like

    Comment by katie — May 8, 2012 @ 11:03 PM

  7. I think neuros DO know the correct terms but are afraid to tell the patient for fear they won’t understand.

    However, I agree. You should be told exactly what type of epilepsy you have and then research it yourself. There’s plenty of easy-to-understand research and explanations out there!

    And Candi is a perfect example. She researches like crazy to help people understand and give them the answers they need.

    As far as carrying around a card, I DO, so you know I agree. At the very least, it should have your:

    FIRST AND LAST NAME
    EPILEPSY AND/OR MEDICAL CONDITION
    MEDICATIONS AND ALLERGIES
    DOSES OF MEDS
    DR. PHONE NUMBER
    IN CASE OF EMERGENCY CONTACT NUMBER

    Then there’s another concept:

    Attractive Epilepsy Alert Jewelry

    https://epilepsytalk.com/2010/05/04/attractive-epilepsy-jewelry-2/

    (Read the thread.)

    And no, Katie. You’re not preaching. You’re bringing up a very important topic!

    Like

    Comment by Phylis Feiner Johnson — May 9, 2012 @ 4:01 PM

  8. “I think neuros DO know the correct terms but are afraid to tell the patient for fear they won’t understand.”

    Sorry Phylis, but that makes no sense at all. It sounds more like lazy doctors! If I were newly dxd then any terminology would be hard to understand initially, so why not just start out with the right words? Unless the patient has learning /cognitive damage then tonic clonic etc is no harder to learn than grand mal etc. And if for any reason the patient is unable to understand then the family or caregivers should be able to.

    As I said in my original post here, I haven’t heard the old terms used by clinicians here for at least 10 years, and nearly all the people I’ve met in person who have been dxd in that time were given the correct names right from the start. Sometimes when I’ve been educating the public (especially older people) some of them do get confused about TC so I tell them it’s the correct name for GM then they understand, but that’s what they’d heard in the “olden” days. So I think that the more we say TC etc then GM etc will eventually vanish. When I post in forums or chat I always use the proper terminolgy and I do try and correct (politely) when someone uses the old terms, but it’s very defficult when that person goes on the defensive adament that they’re correct.

    I don’t carry a fully detailed card around, but I have my medic alert and the wallet card that comes with it. I have all my drug info/allergies in the front of my diary that goes everywhere with me. Thankfully I don’t have to deal with hospitals often because my TCs are nocturnal, and when I do end up there I’m with it enough to tell them to look in my diary. That system works pretty well.

    Like

    Comment by katie — May 9, 2012 @ 10:34 PM

  9. I agree!

    Like

    Comment by Phylis Feiner Johnson — May 10, 2012 @ 2:50 PM

  10. It’s been good to have the opportunity to discuss this- I really hope it’s been read by a few other people!

    Like

    Comment by katie — May 11, 2012 @ 6:06 AM

    • Me too. But the numbers show a big interest in the Stats and Facts of Epilepsy…which isn’t a bad thing… 😉

      Like

      Comment by Phylis Feiner Johnson — May 11, 2012 @ 6:20 PM

  11. Sharing notes and reading about meds has helped me drastically. I never let it bring me down. The meds are what did a job on me.

    Like

    Comment by Tony Murray — October 20, 2013 @ 5:46 PM

  12. I sure can understand that. As so many of us can. 😦

    But at least you’re going off Keppra now, right?

    Like

    Comment by Phylis Feiner Johnson — October 20, 2013 @ 6:36 PM


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    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.

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