Epilepsy Talk

2012 Most Recent Epilepsy Statistics | June 27, 2012

These numbers may scare you, depress you, or stir you into action. Whatever your reaction, they’re inconvertibility true.  From the Institute of Medicine, via the Epilepsy Therapy Project itself…

65 million…

Individuals in the world have epilepsy.

33 million…

The population of Canada.

54 million…

The population of France.

150,000…

New cases of epilepsy in the United States every year.

1 in 10,000…

Newly diagnosed epilepsy patients that will die from sudden unexpected death in epilepsy (SUDEP).

38…

Drugs that are available for epilepsy use world-wide.

7th…

The rank that epilepsy merits on the global burden of mental health, neurological and substance use disorders worldwide after Alzheimer’s, schizophrenia, and depression and alcohol use; but ahead of migraine, panic disorder, insomnia, post-traumatic stress, Parkinson’s disease, and multiple sclerosis.

2…

Number of antiepileptic drugs that needs to be tried and failed in order to be considered drug resistant to epilepsy.

1…

is the number of daytime seizures needed to trigger driving restrictions in every state in the U.S.

32…

days is the average waiting time for a new patient to see an epilepsy specialist.

25…

days waiting time on average for an inpatient evaluation to an epilepsy monitoring unit in the US.

166…

Number of epilepsy centers in the United States.

1 in every 26

Americans will develop epilepsy over the course of their lifetime.

by Joseph I. Sirven, MD
Editor-in-Chief, epilepsy.com



19 Comments »

  1. We are in deep trouble, NOT much ATTENTION attracts Epilepsy or being done about it, LORD HAVE MERCY,,,

    Thanks to crusaders like you, WE WILL KEEP FIGHTING.

    Like

    Comment by Gerrie — June 27, 2012 @ 5:23 PM

    • Well, it’s literally like “Do or die.”

      Like

      Comment by Phylis Feiner Johnson — June 27, 2012 @ 7:08 PM

      • PhylisFJ: I’m not “giving up”. I’m saying that none of the neuros I’ve seen (and I lived in Los Angeles County and San Diego County) had or has epilepsy. They do not even have relatives who have it. With all the peeps in the stats, you’d think a physician would at least LIE about having no relatives who had seizures. I’m interested in knowing more about the scary parts of “brain surgery.” I love my hair. I love my head and scalp and I loathe being in the hospital. What is involved? Why would any health insurance group bother to pay for someone who does not have daily seizures? The head injury was a lot easier to deal with. I was just plain forgetful. Then, the seizures; then the meds. The meds were the worst part. When I take them, I feel NOTHING else. No hunger, no interest in my hub other than kisses, and no anger, not even perspiration!No glistening? I still feel quite well, something I have not felt since I first hit my head in 1989! It ruined my law school degree, all the money my parents paid for college and grad school, and it ruined the second half of my life (presume I’m going to live to be at least 90. I’m not blue: but I sure as hell am trying something other than what my neuro told me. He was not even upset when I told him I was not going to take those meds. Until I taper off the Dilantin we will not know if my brain has fixed itself–Lord knows I have spent enough time in bed.

        Like

        Comment by meesher — July 3, 2012 @ 8:46 PM

  2. Well, then I guess we beat some statistics. It took me 4 years to be taken seriously (well, my child is the one with the epilepsy), 4 drugs failed and yes, he was “labeled” intractable and we waited years to be seen in an actual monitoring unit, but the 10 years of fighting our way through the system paid off. He was wrongly diagnosed with partial seizures, has in fact generalized seizures and then, the FIRST drug worked immediately.

    Like

    Comment by Diana K — June 27, 2012 @ 7:42 PM

    • Awfully sad that you had to wait 10 YEARS for a resolution. But I’m glad he’s now SUCCESSFUL with his drug therapy.

      Like

      Comment by Phylis Feiner Johnson — June 28, 2012 @ 10:19 AM

  3. I’ve taken Dilantin for 2 years; also Vimpat. I know I had one grand mal and one petit mal. I do NOT know what was happening when they hooked me up to the EEG. Six doctors, all in a row, stood in my hospital room and told me I was an epileptic. My hospital records say I presented in status epilepticus. 10 days ago I stopped taking those evil meds that have rotted out my front teeth and are trying to rot my molars. I have been an invalid for two years. I Stopped taking the meds. I am a non compliant. And still I am sitting up and typing. I read that Valium is sometimes used to keep seizures at bay. I am using it. No, that does not mean it will work for anyone, but it is working for me. Now, if I do not check in next week, you’ll all know I was not only an epileptic, but dead.

    Like

    Comment by Michele — July 3, 2012 @ 2:16 AM

    • Oh Michele,

      I took Dilantin for 10 years and I ended up with my long hair falling out and galloping gum rot.

      But that DOESN’T mean you should give up. There are zillions of meds out there.

      C’mon, where’s the fighting Meesher spirit that I know and love?

      Please either see another doc
      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/

      Or get further testing. Beyond EEGs…Diagnostic Tools for Epilepsy

      https://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

      And you might try Klonopin instead of Valium. (I’m on it.) It’s an anti-anxiety/epilepsy drug.

      DON”T GIVE UP. PLEASE!!!

      Like

      Comment by Phylis Feiner Johnson — July 3, 2012 @ 10:32 AM

    • Don’t ever give up or give in to Epilepsy, please! I know the road you’re traveling. I was on Dilantin give or take 25 years, on and off, of my 50 years with Epilepsy. After years of Neuro’s pushing the next ‘new’ drug on me, I had become a non-compliant and began Dr shopping in Florida. I told a GP in Florida, I was only on Neurontin (lie) and he prescribed me the max. It did absolutely no good and I was seizing more than ever! but I was fed up with pill pushing Dr’s. When I moved to NY, I told my new wife that there was nothing anyone could do, so just accept it. Thank God I was wrong. I went to an Epilepsy Center (at NYU) and they wondered why no one ever told me about the many choices available. I was the most ignorant person you can imagine (didn’t know Phylis then) and I tried the NYU Drs. After years of seizing I finally found a Dr that cared, tested me without any of the records I had in FL.(fresh start) and diagnosed me correctly. I was a candidate for brain surgery and I’m now 3 years seizure free. When I was in my pit of despair, if someone told me someday I’d be seizure free and down from 6 drugs to just one maintenence drug (lamictal)

      , I’d have told them they were crazy. Please get an opinion from a Center that specializes in Epilepsy. They can tell you whats going on with you. I don’t know how old you are, but I wish some Dr. told me about choices a long time ago. Maybe one will help you. Good luck and NEVER GIVE UP !!!!

      Like

      Comment by Charlie — July 3, 2012 @ 6:53 PM

      • Dear Michele,

        Please listen to Charlie. He went from botched up surgery in some Florida hospital to completely successful surgery at NYU — with one of the best neurosurgeons in the country. (A member of my hero Orrin Devinsky’s group.)

        Charlie is completely recovered. I’ve been with him for his neuo check-up and he only takes Lamictal (which we’ve both found user-friendly) for maintenance.

        The surgery has literally changed his life. I’m sure if you want to talk to Charlie further, he’ll be glad to give you his email address and help coach you. He’s a kind, caring, generous man.

        And this may be obvious, but have you tried any of the anti-epilepsy diets?

        Three anti-seizure diets that could change your life…

        https://epilepsytalk.com/2009/10/04/eating-well-is-the-best-revenge/

        Please Michele, let us help you…

        Like

        Comment by Phylis Feiner Johnson — July 4, 2012 @ 11:20 AM

      • I’m doing well with no meds at all. Although I did take a Vimpat last night at hub’s insistence. Tell me more about brain surgery. I am meesher with the @ sign and then pacbell. plus the net. Giving UP is not what I’m doing: taking back my life is what I AM doing. And I used to grow one large MJ plant in a closet with a gro lux bulb. I knew how to make the seeds sprout, it’s terribly easy, and with the bulb, one keeps the whole idea to one’s self. I think we should not use the “words” in full in a site, as it is setting us up. Phylis, I do not have any email from you with a reply to sender address. I wish to ask you some questions, receive a confidential reply and so on. If you do not wish to, please say so.
        Michele

        Like

        Comment by meesher — July 4, 2012 @ 6:38 PM

  4. I have had seizures sence 1984 did not no that red grapefruit jucie would wash the meds from your body totaled a 1997 cadilac deville up a hill at 80 miles&hour back down the hill and hit a steel light pole an pulled the concret out of the ground helicopter ride and amost died dont drive anymore life is like a vapor cant be replaced . do not drive :

    Like

    Comment by Marsie Neal — July 3, 2012 @ 8:25 AM

  5. How in the world did you hit the helicoper too?

    LIFE is a drive, sometimes dangerous, sometimes not. Sometimes joyous, sometimes sad.

    But hang in there. (And I’m glad you’re not driving any vehicles now.)

    Like

    Comment by Phylis Feiner Johnson — July 3, 2012 @ 10:35 AM

  6. Michele, did you not receive my email yesterday?
    (7/3) If not, please email me at pfj@pfjohnson.com

    Like

    Comment by Phylis Feiner Johnson — July 4, 2012 @ 7:48 PM

  7. Phylis, I did read the gentleman’s comments. If I WERE to think of neuro surgery, I think it would be at either UCLA or a San Francisco hospital. Any in Sacramento? I am still seizure free, but my research tells me that Dilantin is not exactly a lickety split liver clearer. (that sounds technical…) My MRI and CT scans were totally normal, It toook an actual seizure, in a hosptial, before an induced coma, for them to see seizure activity.with a plain old EEG. I had been seeing my own neurologist for several years here when all I had were several head injuries (ALL?) Once he started seeing bumps bruises, broken fingers and arms, (not legs, knock on wood) he had his EEG guy hook me up. No seizure activity then, so no documented seizures. Since I am at home all the time, from the head injuries, no one was seeing me seize. Or talk in half sentences, or lose words, etc. The only humans I saw were kindly housekeepers who spoke Spanish as a first language, and they did not think I was stammering. (???) The valium really helps to slow me down. I take it only at night, and before my nap(s) I CAN NAP with a piece of Valium. We shall see if my head injury/epilepsy respond to 10 days in bed, knocked out like a rock. (PFJ: I received no email at my home address)

    Like

    Comment by meesher — July 4, 2012 @ 11:00 PM

    • What do you mean “We shall see if my head injury/epilepsy responds to 10 days in bed, knocked out like a rock.”

      Were the bumps bruises, broken fingers and arms from? Falls? Seizures? Concussions?

      Like

      Comment by Phylis Feiner Johnson — July 5, 2012 @ 9:41 AM

  8. I have been on a combination of 2 x 200 mg of Vimpat, 100 mg of Lamictal and 200 mg of Epilim daily for a few months after having weekly nocturnal Grand Mal seizures while taking Zonegran instead of Vimpat.
    I have only had one seizure on Vimpat and this has been due to lack of sleep.
    I feel a lot brighter off Zonegran but I am not happy with my poor memory in general and am worried about long term damage this stuff does to your memory.

    Like

    Comment by Ross — August 20, 2012 @ 6:45 PM

  9. Unfortunately, that’s one of the side-effects of Zonegran and many AEDs.

    Zonegran can cause “problems with your concentration, attention, memory, thinking, speech, or language.”

    http://www.fda.gov/downloads/Drugs/DrugSafety/UCM152828.pdf

    Like

    Comment by Phylis Feiner Johnson — August 20, 2012 @ 7:05 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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