Epilepsy Talk

New Epilepsy Diagnosis – Now What? | April 29, 2022

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 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.

You might also go to: 2022 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors https://epilepsytalk.com/2022/01/08/2022-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

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.

Try to 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 https://www.epilepsy.com/

Click on Understanding Epilepsy and you’ll learn everything from What is Epilepsy…Causes of Epilepsy…Diagnosis…Treatment…Complications and Risks…and in-depth information on all of those subjects.

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 understanding 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 a lot 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 just 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.

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Posted in Epilepsy, Tips

3 Comments »

  1. For 61 & 1/2 years now, EPILEPSY has not made my life easier or my mothers who will be 91 in August. On Thanksgiving Day of 1960 this all started at 5 months old. Why?, Who knows? but there is no life for every 3,4,6 or when ever a doctor thinks he needs to see you or have some tests done AGAIN that does not seem to matter any, just seems to be the same old routine each year or every 18 to 24 months & nothing stops the seizure condition I have from happening. BUT after 61 years on NOV 4th 2021, I was really getting challenged to get that RNS, which after 21 years ago having the brain surgery that I was so sure to end my seizures, BUT IT DID NOT, my neurologists was so sure I was going to say YES the that RNS. I then asked, What drug have I not tried yet, that I can take with the Vimpat so maybe I can have 2 drugs or 1 that will end my seizures ? He then said XCOPRI that is still a trial drug, & I thought too that the RNS is still a trial device, and it may not work for me, so I though swallowing a few pills would be better than to have my head cut on again. I said YES to XCOPRI, & since the last 6 weeks of 2021 & all of 2022, NO SEIZURES have happened, and this EXCOPRI does what it says where I have seen my GABA neurotransmitter increase & work better, & the GLUTAMATE neurotransmitter,seems to be producing more GABA to relax my brain better & I am more at peace daily that I seizure is NOT going to happen, when I lok at a day or week of a certain month, like I was doing 1 year ago & beyond every season & month. This should never take 61 years to find a drug like this that I KNOW I NEEDED before I was 4 years old, & yet this XCOPRI is only to be good for ADULT cases of epilepsy. They at the FDA & CDC should make it possible for any 5 year old to try taking 5 MGS of the purest form of the EXCOPRI without the ALUMINUM & other toxins that some doses has in the 12.5, 25, 100, 150 & 200MG tablets. The 50MG tablets are the safest from all I can tell with every tablet I have taken up to the 150MG tablets. As I say THE BRAIN NEVER LIES, when you give to it these BAD TOXINS or you eat & drink them into your BBB / Blood Brain Barrier, & when the digestive system slowly works, you end up having MORE seizures, from MAGNESIUM STEARATE with is in all AED’s & all OTC drugs. So I know why in the last few days I have not used the bathroom, when I have been taking TYLENOL for a few body aches, & that ends tonight taking tylenol. The LOBELIA herb will not do that & has NO magnesium stearate in it.

    Liked by 1 person

    Comment by James D — April 29, 2022 @ 8:25 PM

  2. Fifth Friday in a row that I have had a witnessed Epileptic Seizure!
    People partying🎉🎭🎱 or conversing too loud that I can hear it all day long.

    If I still was at home the doctors would let me know before I was released from hospital to go back “home” hug my fur baby and do anything that I had to do and then sleep. Turn off my phone for the day and let it just be my fur baby, a lot of sleep and whatever movie I would pop in.
    Keynote: Relax, sleep, change the voice message on the phone to say whatever you want it to say. Especially when you’re told to take a few days at least to sleep! To heal for your health benefits because of the Epileptic Seizures!
    That’s what I was doing Self Care.
    Until 2014, oh well I was doing that when blond females decided that it would be nice to change the lock of my apartment door when I was in hospital for Epileptic reasons. My fur baby was still alive but the cared nothing!

    As for doctors? I’ve been taken to a lot of people who absolutely know nothing about Epilepsy especially since 2018!
    I wonder what the International League Against Epilepsy would have to say!!

    Liked by 1 person

    Comment by Taima — April 30, 2022 @ 12:09 AM


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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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