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General => Open Discussion => Topic started by: Zairyn Arsyn on August 21, 2012, 01:32:12 PM

Title: my seizure disorder, my fellow terragineers
Post by: Zairyn Arsyn on August 21, 2012, 01:32:12 PM
been meaning to post about this but i'm a chronic procrastinator sometimes.
some of my facebook friends already know about this, but a lot of ppl here on this forum do not.

I've had Epilepsy since I was 14 years old, i've kept quiet about it for a long time because ever since and before i joined this forum it wasn't having seizures anymore.

now for over a month i have been having seizures, and the medications weren't exactly helping so much anymore.

things started to get pretty bad last Monday, they became more frequent - multiple clusters of seizures in and by the  afternoon i went to the hospital and spent 2 nights and  2 1/2 days in the hospital being getting injected with Ativan & Keppra, tests were done, CAT scan, EEG, (nothing bad was found) i was being being monitored, etc, etc, the seizures stopped, i could sleep normally again without interruption.

they changed my meds-
i went from 150mg of Lamotrigine 2x a day,
now i am taking 200mg of Lamotrigine 2x a day and 500mg of Keppra 2x a day
it seems to be helping.
Title: Re: my seizure disorder, my fellow terragineers
Post by: yossam on August 21, 2012, 06:17:26 PM
Glad you are feeling better. I know what it is like to have health issues. I have venous insufficiency, basically very bad blood circulation, compounded by polycythemia. This causes my bone marrow to produce too many red blood cells, making my blood about the consistency of pancake syrup. I take medication for both, some days are better than others.

Hang in there, it's all you can do at times. 8)
Title: Re: my seizure disorder, my fellow terragineers
Post by: masonspappy on August 22, 2012, 12:53:23 AM
I gotta tell this, and I hope the Planetside folks see the humorous side of this.   ;) In 2007 I had a stroke. Except for some numbness in my toes I was ok physically. But my memory was shot and my mental functioning wasn't too good.  Could not remember the names of most people even though I easily recognized their faces (and I had known many of them for nearly 20 years).  Began cursing like a sailor until my wife read me the riot act. And it was obvious that I did not have the same mental acuity I had before the stroke.  Before the stroke I'd been a gym rat, working out 4-5 days a week at YMCA. The doctor said I now needed 'mental calisthentics".  We hit upon the idea of learning new software, preferably something that was very difficult to learn.  Blender seemed like the perfect choice -  the documentation was vague, out of date, confusing or non-existent.  There was nothing intuitive about it. I had to work hard for every bit of knowledge I gained.   IT was just like building muscle and stamina at the gym
My 2nd choice, using the same selection criteria, was  Terragen.
3rd choice was xFrog.
You guys hang in there and keep fighting !!
Title: Re: my seizure disorder, my fellow terragineers
Post by: Upon Infinity on August 22, 2012, 01:25:30 AM
You and I are in the same boat, Mason.  I just downloaded Blender and am instantly overwhelmed.  I've used 3D applications before.  I used Terragen 0.9, I'm currently using Terragen 2, and I've used text-based 3D like POV-Ray where you actually have to describe the scene in code, and right now I can't even scale an object along a single axis!  WTF?!
Title: Re: my seizure disorder, my fellow terragineers
Post by: TheBadger on August 22, 2012, 04:01:57 AM
Don't let it get you down zaai.

Whatever the situation is, whether it can ever be cured or not, its not up to you. So focus on the positive things in your life, your art for one.
And try to remember when an attack hits that life is worth this hardship. Because it is.
I have seen a man have a seizure, and it was pretty scary for me. I cant imagine how it felt for him.

I Hope you and you Dr. will find a drug cocktail that works.
Title: Re: my seizure disorder, my fellow terragineers
Post by: Zairyn Arsyn on August 22, 2012, 09:38:19 AM
oh, believe me, i've had my share of funny / embarrassing / weird things with epilepsy,
so its not a totally negative experience.

on a few rare occasions i have had vivid hallucinations and/or visions.
most of the time there just weird, but a few i have left me wondering if there was any sort of deeper meaning.

once during a episode i was asked what my name was by my mother and i told her my name was "pizza" and then what her name was, i said "popcorn" (it think it might have been the other way around, it was such a long time ago)

in some i may do or say things i cant explain after the seizure is over.
once in college during a episode i got up from my seat and nudged a classmate to follow me out side of the classroom and into the hallway,
rhen it ended and i was wondering why i did that. (very embarrassed)
Just recently i was babbling on about some bridge during a seizure, afterwards i couldnt give any explanation to what i was talking about. 

sometimes i blackout and damage objects, once i put a hole in a wall with my elbow, broke some glass on a picture frame i was relatively unharmed on both of those.
Title: Re: my seizure disorder, my fellow terragineers
Post by: rcallicotte on August 22, 2012, 02:55:04 PM
Terrible situation, really.  Sorry you're going through that.  Sounds almost like my own childhood, but I don't believe I suffered nearly as much.

If we can help, you know, with talking about it or just getting your mind on other things, let us know.
Title: Re: my seizure disorder, my fellow terragineers
Post by: Oshyan on August 22, 2012, 05:11:15 PM
Sorry to hear that your condition has returned, but I'm very hopeful your change of meds will help. I must say it warms my heart that you felt like sharing with us here about it. The community here is great. :)

- Oshyan
Title: Re: my seizure disorder, my fellow terragineers
Post by: inkydigit on August 22, 2012, 06:06:44 PM
well, zaai, you already know the score with me; I was recently diagnosed with epilepsy, and have suffered all of my life... though undiagnosed... many weird/funny/odd things happened to me, again I was unable to explain, and many(most) of the times, I was unaware of what was happening, or had happened... recently things got a lot worse, and began interfering with my daytime life... after taking a huge seizure in my sleep, I was taken to hospital, where I stayed for a week, undergoing the same tests you describe... my life has changed, somewhat, but I have tried my best to remain positive, to focus on what means the most to me and the people close to me, my family etc...
I found that even talking to you briefly has helped me a lot. 

I feel for you, I hope things level out for you soon.
Stay strong. 
J
:)
Title: Re: my seizure disorder, my fellow terragineers
Post by: rcallicotte on August 23, 2012, 09:22:40 AM
Sorry to hear that, Inky.

The weirdest thing about this sort of ailment (to me) is that sense of isolation like we're the only one experiencing this weird trip into appalling nauseating trauma and, to add to the misery, people (though sympathetic) don't get how absolutely terrible it all is.
Title: Re: my seizure disorder, my fellow terragineers
Post by: TheBadger on August 23, 2012, 07:09:30 PM
3 of you? That is really something. Terragen is a small community, what are the odds that there would be such a large cluster of effected people? This condition must be much more prevalent than I could have imagined. Do you guys know what causes epilepsy? Is there going to be a cure?
I'm just really surprised by this.
Title: Re: my seizure disorder, my fellow terragineers
Post by: Zairyn Arsyn on August 23, 2012, 09:27:15 PM
mine was a birth defect, but my epilepsy remained dormant for a long time, and i no idea i had it until i started having symptoms and couldn't explain what they were until i had my first Grand Mal

there are many causes, i'm not going to list a lot of them, but usually if you actually "have epilepsy" it would be a birth defect, or a serious brain injury, or even possibly something that could be hereditary.
the seizures themselves are caused by abnormal excessive or synchronous neuronal activity (for me)

as for a cure- there isnt really a true cure that has been recognized
some might claim to treat/cure with alternative medicines / therapies such as Craniosacral Therapy
(i have had this done by multiple practitioners over a period of 4+ years in the past, and it didnt seem to help)

if your lucky you might just "grow out" of it at some point as you grow into an adult.
(i have known people with epilepsy who had this happen)

Vagus nerve stimulation
http://en.wikipedia.org/wiki/Vagus_nerve_stimulation

then there is brain surgery, first they have to determine where the seizures are originating from in the brain, and then if it is possible to remove the area in the brain that is causing any problem.

if i find something else i will mention it later.
Title: Re: my seizure disorder, my fellow terragineers
Post by: matrix2003 on August 23, 2012, 11:39:44 PM
This forum has always inspired. The human journey is challenging and often we feel alone. Thank you for sharing and understand that we are all right here with you. Sincerely.
Title: Re: my seizure disorder, my fellow terragineers
Post by: rcallicotte on August 24, 2012, 07:48:56 AM
I didn't have epilepsy.  But, because I was so close to it in symptoms (which are no more), I had to take Dilantin and was treated for allergies to curb some of the problem.  But, no medicine actually healed me.
Title: Re: my seizure disorder, my fellow terragineers
Post by: Zairyn Arsyn on August 24, 2012, 08:14:08 AM
I've been on Dilantin, wasn't that effective.
Quote from: calico on August 24, 2012, 07:48:56 AM
I didn't have epilepsy.  But, because I was so close to it in symptoms (which are no more), I had to take Dilantin and was treated for allergies to curb some of the problem.  But, no medicine actually healed me.
some anti-convulsants also function as mood stabilizers, Lamotrigine [lamictal] (which i take right now) also works as a mood stabilizer for people who are bi-polar
Trileptal had a tendency to give me double vision, and sometimes dizzy, too dizzy to walk in fact.
Title: Re: my seizure disorder, my fellow terragineers
Post by: rcallicotte on August 24, 2012, 09:28:56 AM
After a lot of research on me when I was 13 and 14, the conclusion was something was triggering an inner ear problem.  But, nothing was ever conclusive and nothing the doctors did mattered...I was always sick.

I hope the meds are making it better, zaai, and not just a little more tolerable.
Title: Re: my seizure disorder, my fellow terragineers
Post by: FrankB on August 24, 2012, 04:22:00 PM
Quote from: Oshyan on August 22, 2012, 05:11:15 PM
Sorry to hear that your condition has returned, but I'm very hopeful your change of meds will help. I must say it warms my heart that you felt like sharing with us here about it. The community here is great. :)

- Oshyan

+1 here, Oshyan!

Lane, your story reminds me how everyone got their cross to bear, in one shape or another. It's an important reminder, thank you.

I wish you good luck and that you magically outgrow your condition at some point.

Frank
Title: Re: my seizure disorder, my fellow terragineers
Post by: Zairyn Arsyn on August 24, 2012, 11:50:02 PM
this has been a relatively good week as far as seizures and sleep go.
many times i have learned from my own mistakes how important sleep can be.

didn't have time to mention it last night, but i myself had the surgery procedure done too,
it was a long time ago - i was still in high school when the testing started at Shands Hospital in Gainesville FL
the surgery was in the winter of 2002. i missed about 3 weeks of school for that.

everything seemed ok for a couple months, at that time i was a senior and then a HS graduate, i would hang out with friends usually on weekends and we would stay up into the wee hours of the night (up to 4am or so sometimes...), either having movie marathons or walking/roaming around a friends neighborhood making visits to a local graveyard or walking around on a dry lake bed.

sometime later during the summer i had a seizure...

i think the reason i had it was definitely sleep related, i remember my neurologists telling me something about that way back when.