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Having Epilepsy

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[audio:http://m.podshow.com/media/170/episodes/48805/inoveryourhead-48805-02-05-2007.mp3]

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I’ve been reading David B’s massive graphic novel Epileptic, so I felt it was time for me to come out and talk about what having epilepsy means to me.

I have more to say about this, but for now, I just wanted to put it up. Looking forward to your comments.

* Filed by at 10:31 am under download, podcast


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18 Responses to “Having Epilepsy”

  1. mtl3p Says:

    Hey J.

    Just listening to this. When you mentioned having powerful drugs on you at all times it reminded me of my experience of taking medication / being medicated for ADHD when I was 18. We tried a bunch of stuff because ritalin didn’t do anything much beside kill my appetite. Once it was legal speed (forget the name) and finally on low-grade antidepressants. It was weird to have the speed on me because it was … well .. speed. And once my girlfriend of the time hid the medication on me because it made me boring. (young love ??)

    Thanks for writing this. It was wonderful to hear you talk about this part of your life.

    And what you feel about your body, I feel about my brain. That while it belongs to me, it is far from being under my control. That’s probably a more familiar thing than your situation, and it is not as scary, but I imagine it has some of the same emotion about being at the mercy of something you’re inherently supposed to be in control of.

  2. Julien Says:

    Hey Michael, great comment. I’ve wondered for years whether or not the ‘me’ that I think I am is truly me– or how much of it has to do with the drugs I take. I didn’t get into that subject during the recording, but I’ve always thought about it.

    As for teenage girlfriends– yeah, they can be crazy sometimes. 🙂

  3. Christopher Penn, Financial Aid Podcast Says:

    That was a very moving episode, man. I have a friend here at our dojo who has grand mal seizures about once a year, and she absolutely despises being treated differently too. And she’s definitely not disabled or handicapped. True, if she’s in the middle of a seizure, she’s incapacitated, but otherwise she’ll knock your ass out cold with a wicked left jab.

  4. Thomas Says:

    Amazing episode, Julien.

    I can now understand what my cousin was going through with his epilepsy. He had quite severe grand mal seizures a few times month. I know he was worried about what the medication was doing to him, and he found smoking pot, actually helped his epilepsy.

    For someone who doesn’t have epilepsy (and I never saw my cousin have a seizure), I can’t begin to understand how scary it must be when a seizure happens. Again an amazing and moving podcast, today.

  5. Mark Says:

    Incredible. Passionate. Honest. Supportive. That was an incredibly powerful Podcast, Julien.

    Prior to turning 20 or 21, I never knew what a headache was. That was when my life changed dramatically. I suddenly suffered from Cluster Headaches. It was a seasonal thing. At first I sufferred through as many as 4 a week, in the evenings between mid-December and May. It was as though someone threw a switch on in December, and flipped it off six months later — though, electrical storms, no matter which time of year, guaranteed an episode.

    The headaches were brutal and I was dragged through a slew of medications, including Tegretol. At one point it was suggested that my Clusters had an epileptic component to them, though it was never confirmed even after the usually battery of tests.

    Eventually my Clusters became less frequent and more Classic-Migraine-like and I would suffer for days instead of having a three-to-six hour debilitating blast.

    The last of my migraines happened about four years ago. I don’t miss them, and I definitely don’t miss the meds.

    Here’s to the end of your epilepsy!

    Cheers,
    Mark

  6. Whitney Hoffman Says:

    My sister has epilepsy subsequent to a head injury as a 17 year old. When she forgets her meds, she has some pretty scary seizures from time to time. This podcast is important to listen to, esp. for family members, to really understand what it is like for the person, the disorientation, the panic, and lets us see it from a different point of view. Thanks, Julien.

  7. Stephanie Says:

    Thanks for this episode, Julien. It was really hard for me to listen to, but I needed to hear it. My little brother was epileptic from the age of five or six. He was on one medication after another for years- paired with his ADD, his personality changed drastically depending on the mix of drugs he was on. He also hated being treated as disabled- his middle school wouldn’t allow him to go swimming or rollerblading because they were afraid he’d have a seizure and hurt himself. He passed away a couple years ago… they believe because of a seizure. Thanks again- it’s so hard for me to explain to people how difficult it was for him.

  8. Having epilepsy helps make friends Says:

    […] Going out to run some errands, but I just wanted to thank everyone for the load of honest, genuine emails I’ve received because of my epilepsy podcast episode. […]

  9. Justin Simonsen Says:

    Julien,

    It was extremely hard for me to listen to your show because it hit so close to home. I had to turn it off for a few days and come back to it little by little.

    My red pill of choice is Zonegran® or Zonisamide. I’m on a twice a day regiment as well and it’s been a little over two years since my last tonic-clonic seizure. Every time I see my mom she never forgets to ask if I remembered to take my meds today. I’ve since met a number of people with epilepsy and I am too lucky to not remember anything but an aura about two minutes ahead that is undeniable and then the paramedics looking down on me. I’m told that I’m unconscious for up to five minutes. The thing that really sucks is the headache that inevitability comes one hour after. I experience a headache so bad that I can’t walk or crawl – it’s amazingly painful. Just thought I’d chime in because that show really got to me. Thanks for the great show and I’m definitely going to pick up that book epileptic.

    Justin

  10. Julien Says:

    hey justin, thanks for the comment. you guys are awesome for the everything you’ve said in here, really supportive stuff. thanks man.

  11. Phil Campeau Says:

    Hey dude. It’s been a while since I listened to your show, but I’m finally getting away with listening to my iPod at work, so I finally have an abundance of listening time. This show was amazing. It was really interesting to just listen to you ramble on for half an hour. I often find myself far more interested in the bits of talking on your show than the music you play.

    Hahah I’m listening to the previous show now, and I love this more casual format you seem to be into now. Doing a show at a bar, talking to the waitress mid sentence. Amazing.

    Do you realise I haven’t seen you in over a year at this point?

  12. Julien Says:

    Phil! That’s a f’n long time dude!

  13. Karen (aka MrsB) Says:

    Thanks for a great episode, Julien. I have a student with Traumatic Brain Injury who has seizures daily in my classroom. I’ve always wondered what’s going on in his head just prior to, during, and after a seizure but he’s not capable of telling me. I often wonder if he can sense that it’s coming. Granted, I’m not trying to trivialize it and insinuate that all seizures are alike but you’ve given me some sense of what it’s like when he either “checks out” (petite) or has a full out grand mal.

    I suffer from migraines complete with an aura, and although it’s not a seizure, I can “sense” when it’s coming by how I feel. I know it’s not the same, there is a feeling that’s unique to that experience.

    Here’s to staying seizure free!! And thanks for a great podcast 🙂

    http://www.patriotworld.com
    http://www.patriotworldpodcast.com
    http://www.twentyfifthhour.blogspot.com

  14. kelly betteridge Says:

    Hi I live in a small area called kernville,ca, an hour north of bakersfield. I haven’t had a seizure in about 12 to 13 year’s. I’m Looking for a friend in my area, to talk too, or to do thing’s with. Kelly

  15. Tore Says:

    Hi Julien, I’ve been listening to your podcast for about 1.5 years. About two hours ago a friend of mine fell to the ground and had a seizure. She never has had anything like that happen before. I thought of this episode. Thanks.
    Tore

  16. Jane Says:

    I haven’t had a seizure since put on medication 20 years ago, so as far as I’m concerned, having epilepsy is simply a bothersome requirement of having to take a few pills each day.

    What I can’t stand though is how others treat me differently, despite the fact that I haven’t had a seizure in 20 years.

    *Maybe you should hire someone to go up and the fix roof, you might have a seizure.

    *I don’t want you to drive.. I’ll drive, you might have a seizure

    *Is that too strenuous for you, you don’t want to have a seizure.

    *Should you go on that trip alone? You might have a seizure.

    I haven’t had a #$% seizure in 20 years!!! Stop with the special treatment.

  17. Jamie Smith Says:

    Hi Julien,

    I’ve just listened to your podcast, it has given me a better understanding in epilepsy and your feeling towards it. Thank you for giving me a better understanding.

    p.s still have a few questions that need answering or it might be how I’m feeling right now.

    (I went out with a girl that I really liked last night, she told me about her seizures, later on she had two. Her friends told me its because of anxiety and that a new person is around the group.. ie ME. I felt bad within because it was like I was causing her seizures)

    Jamie Smith

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