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Thread: Acceptance of epilepsy

  1. #31
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    Default In resistance

    Because my seizures have mostly been at long intervals, for a long time I pretended to myself that I only had epilepsy during those few minutes every few years when I was actually having a TC seizure. Then, when I had my 3rd brain injury from a sz fall in 2005, my attitude shifted, and I started saying to myself, I have epilepsy all the time. Also when I learned that some of my cognitive oddities may be epilepsy-related. I think part of my difficulty accepting it is that because of a genetic liver condition, only diagnosed in 2010, I can't tolerate most medications. In fact, I've only tolerated lamictal, which didn't change my seizure frequency. I've been withdrawing from it very slowly--VERY slowly--four years so far---because I have really bad withdrawal symptoms.

    I had been sz-free for four years and then last November the stress piled up ( my mother died and I moved, on 5 weeks' notice, from CA to MA to care for my father, and landed in a lot of family conflict, and lack of support for me. And because it had been a while, I got cocky, and didn't act quickly when I had an aura (usually I take Ativan.) So I had a TC. Now I'm in a bad situation. I had a slipped disk that wasn't properly diagnosed, was given a lot of narcotic pain meds--which lower sz thresholds, and am now physically dependent, tho not emotionally addicted, to oxycontin & oxycodone. My (former) doctor downplayed the risk of lowering my dose fast, and I dropped it by 15 mg---WAY too fast--and had a TC. For some reason, this one impacted me more than any other has. During post ictal, my brother had to keep telling me that my mother had died--I didn't remember anything about it--and I just dread having that experience again. It also took two hours for me to get clear headed enough to remember my life--which is long for me, and apparently just post-ictal I was hallucinating bugs crawling on me and was pretty out of control. Fortunately, my brother was visiting and is very good---but now I'm terrified of having another sz, and there's a significant risk of it as I taper off these drugs.

    Also, Ativan seems to be working differently for me. In the past, it made me drowsy pretty fast and wore off by the next day. The last few times, while it did stop the aura, I didn't get sleepy then--but spent the entire next day nodding out---which I hate.

    So right now I'm feeling a lot more afraid of my seizures than I have in a long time, maybe ever, at a time when I have to face a higher likelihood of having one. Since meds haven't worked for me, and they've been infrequent, I've mostly used the Andrews -Reiter method of managing seizure risk--recognizing my triggers and when I'm in a risk zone (way before an aura,) and doing the things that lower risk--eat, sleep, calm down emotionally, reduce sensory stimulation, take Ativan if needed. I also used progesterone since my sz clustered around my period. Now I'm post menopause and I stopped last fall--and have had two seizures since, so I just started up again. Much as I hate being dependent on expensive drugs, I wish there was an effective, low side effect drug that my body tolerated.

    I'm also looking for a new epileptologist, and I'm on medicaid, which covers shockingly little. I'm not part of any networks in the Boston area, so I don't have a good way of finding a neurologist with a good rep--especially one that's covered by medicaid. I did write to Steven Shachter, who has a great rep and writes a lot about epilepsy for a general audience, to see if I could have a a one time consult with him about my whole situation, and I'm hoping a) he says yes, and b) he can recommend someone.

    Anyone on here from MA and have a great neuro to recommend? Given how infrequently I actually saw my former neuro at UCSF Epilepsy Center, I might be able to afford out of pocket visits.

    Anyway, I'm feeling pretty glum and resistant---and glad to be back here after a long break.
    The "other people have it worse" thing doesn't work for me, but I welcome other words of support. Thanks, Aurora

  2. #32
    Distinguished Community Member howdydave's Avatar
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    Howdy Aurora!

    Reading your post just now a great truth just dawned on me...

    This "other people are worse off than I am" offers no solice.

    When we do this we are just turning our self pity outword and focusing it on others.
    The pity is still there, we're just not wallowing in it.

    I'm just as guilty of it as everybody else is.

    What's the answer then?
    Immurge yourself in something that takes your mind off of yourself?
    That's been my strategy for several years now.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  3. #33
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    Default acceptance

    I too, had trouble accepting it at first. Had my first seizure when I was barely 16 yrs old and diagnosed with epilepsy. Kept asking myself 'Why me?'. ... Finally, over time, I accepted it. My biggest mistake was in listening to my parents and my neurologist (at the time), who all told me NOT to say anything to my friends. So I essentially isolated myself, socially, to a degree. Can't help but wonder how different my life would be now had I simply told people then "This is who I am, ... deal with it. You can either like me for who I am or you can walk away."

  4. #34
    Distinguished Community Member howdydave's Avatar
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    Howdy Pete!

    I think that your parents and neurologist probably gave you sound advice given the stage of acceptance that you were in at that time!

    "This is who I am... deal with it!"
    Is probably an impossible position to take until you have come to accept the"this is who I am" issues for yourself!
    In my case, that took about 35 years.

    I
    would have never been able to do this because, at the time, I was wallowing in self-pity!
    (Can you tell that's one of my favorite phrases when it comes to acceptance?)


    Don't forget that everybody has 20/20 hindsight!

    Woulda-coulda-shoulda is a pointless effort that will only lead to frustration and, in many cases, unjustafied hate!
    Last edited by howdydave; 02-11-2013 at 08:01 AM.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

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