Unbeseizable

February 16, 2012 in Facts About Patient Anonymous, Head Injury, Health, Life is Stranger Than Fiction, Medicine, Meds, Neat Neuro Stuff, Patient Advocacy, PTSD and Dissociative Disorders, Seizures, Uncategorized


I don’t know what to say right now but simple facts? Lots of seizures and lots of ironic seizures.

Seizing before, during, and after being picked up for Accessible Transit.  You’d think that would be enough.  Nope.

I seized two days ago, right before I was going to open the door to one of my doctor’s building.

Today?

Whoa.  A bit of seizing while being driven on Accessible Transit.  Then a bit of worsening seizing in the office of Non-Arsey Neuro’s before my appt.  Then, I DARE YOU!!! I began to feel a couple of small, myoclonic jerks in my right leg.  This has been a very serious problem over the last while.

I DARE YOU LEGS.  AFTER ALL OF THIS???

It was a dare I knew I’d lose.  Whether I dared my legs to seize or not to seize.  And the way my legs have been seizing lately, the intensity of the motor movement? I knew I was in for it.  I was cooked.

It’s actually better if I’m standing up when this happens, if you can believe it.  Lean against something, cane in hand, then I can see if it’s going to affect the rest of my body and how.  In the waiting room, I was sitting down.  In a rather uncomfortable plastic chair.

Well, my legs didn’t let me down! Sorry about that.  Bad, bad epilepsy joke there.  First, the right, then not so much the left.  Then up it rose (as it usually does these days.)  God, that chair! My hip was killing me, but what about the wall?

I was going so hard I kept banging the damn chair against the wall! Several doctors work there and I think one is a Pediatrician.  This woman was there with her kid, and if I had a chance, I just may have caught what seemed like an expression of sheer horror on her face.  Charming.

Well, the obvious outcome of the appt. was to increase the Clobazam from 80mg to 100mg per day.  We talked about other things obviously, as he almost carried me into his office.  The first thing I did was ask him for some water as I thought a Valium would be good right about now!

Also, I confirmed it.  I caught it.  I’ve had the first Absence Seizure that I’ve ever known of (you lose consciousness.)  That loss of consciousness is so brief, it can go undetected in so many people.  The “test” if you’ve “lost time?” Were you daydreaming or not? I was not!

I was thinking of something, and then just “popped” back into…the world…from…? And I couldn’t even remember what I was even thinking about.  It wasn’t my DP/DR as it comes in and out gradually.  This was like I entirely disappeared from the world and at some point, came back, knew where I was but had no idea how I got there or where I had been before.

Well, better scoot.  I think the Todd’s paresis is coming on.  Legs definitely heavy.  Oh, yeah.

8 Comments

  1. Barbara

    February 16, 2012 at 22:28

    I’m so sorry to read about your plight. When i was a teenager, i had seizures. Going on a sugar free diet helped a whole lot. Idon’t know if that will be helpful for you or not, but perhaps it is worth considering.

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  2. Barbara

    February 16, 2012 at 22:29

    My prayers are with you.
    Author Barbara altman

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  3. katm

    February 21, 2012 at 06:07

    Thinking of you.

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  4. patientanonymous

    February 25, 2012 at 18:53

    Hi Barbara. Thank you so much for your comments and support. I don’t believe anything I consume lowers my seizure threshold! I even drink and it’s never been a problem!

    I’ve had epilepsy since I was a child. Idiopathic. No known cause. It disappeared when I was in my teen years (not uncommon) but then it resurfaced in my 20s. However, they still remained Simple Partials that didn’t even bother me!

    It was only when I was laid off/made redundant almost four years ago when the seizures really hit the fan! The presumed reason was stress from that. Okay, let’s get things under control (and all was except this “syndrome.”) It also just came out of nowhere. I haven’t had it for years and years or anything.

    So, get back to a job and stability… It never happened (obviously.)

    I know that in some cases (even a personal one) where changes in diet may help people on the Autistic Spectrum. My personal connection was to a boy whose parents took out wheat, gluten and dairy.

    Hi katm. Good to see you. And I was actually thinking of you recently, as well. Two broken heads don’t think like one?

    I don’t even think that makes sense! Ah, cut me some slack. My broken head isn’t really thinking period!

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  5. Barbara altman

    December 18, 2012 at 23:18

    I haven’t commented in a long time.My heart does go out to you. As stated earlier, I seized when I was in my teens. I also had mental health challenges. All of that is gone now. Having been in your situation with regard to seizing, I can empathize.

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  6. patientanonymous

    December 22, 2012 at 14:24

    Hi Barbara altman. Good to see you again and not to worry about when, where, why etc. you comment. It’s alright.

    But thank you for you words of support and sensitivity. I really appreciate them so much.

    Take care and come by whenever you like,
    PA

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  7. Barbara altman

    December 24, 2012 at 13:33

    I’m back for good this time. I’ve had such success with my health challenges that I’m eager to share them. Please feel free to check out my facebook fan page, Recovering from Depression, anxiety, and Psychosis.Everyone has the right to pursue their own approaches to health issues. I offer the information in Recovering from Depression, Anxiety, and Psychosis as a beacon of hope for those who want to pursue health and happiness. It can be done, in spite of challenges.
    Merry Christmas!
    PS. Have you considered brain mapping? I have a cousin who had that done with great success.

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  8. patientanonymous

    January 3, 2013 at 16:00

    Hi Barbara altman. Great to hear you’re back again for good. My blog has missed ya!

    I’m not on FB, but if you’re running a blog, let me know.

    I’ve never even come close to Brain Mapping (well, beyond MRIs, CTs and EEGs!) I want an fMRI so bad, I’d get on my hands and knees to beg for just one copy! I want a pretty picture of my brain all lit up in colours (hopefully!) to hang on my wall! *laughing*

    Could you imagine no colours? ZERO BRAIN FUNCTION. I know I’m pretty “brain dead” at times but…?

    I have an upcoming appt. with another Neuro at a Big Brain Hospital we have here. No, it’s the place to go for all things Neuro. However, I met him before years ago, and he was a total ass. I’m still waiting for my call to go in for VEEG and it’s been at least four years. I’m not joking.

    However, thanks for the suggestion. It is thought provoking and I have some provoking thoughts myself. The only thing that makes me wary is anyone screwing around with my meds (unless they make any titrations.)

    I’ve got so many comorbidities, right? This is the best cocktail I’ve ever been on, and I’m not a pill popper. I’ve been on a lot as well. Moreover, several Anticonvulsants can lower thresholds for Absence seizures!

    Remember what I’ve got? Typical Absence Status Epilepticus! Nonetheless, the appointment is coming up soon. So again a huge (even random?) thanks to you. It’s a great prompt! I should really sit down and think about other concerns I have, except for the above. He could very well discount that, as some of my problems have lessened there.

    x

    EDIT: Found your site. Bookmarked.

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