Headaches and Learned Behaviors from Epilepsy?

[AndrewIrish]

Hey all,

I am not a talkative person mostly because a lot of the time, when I get too 'into' conversations, I start jerking from myoclonus... and just like the thousand things that trigger that for me, I've avoided them... I've become a very non-talkative person... and I realize, I've had to curb so many activities because of how they stress me and effect me... sometimes, I feel like I'm so 'limited' by this 'hyperactive' band of neurons floating in my brain. It's a paradox - my brain is eager to get to work, overeager and when it gets too excited, it short-circuits.

I'm very bored today and I feel like displaying some activities I can not do...

THINGS EPILEPSY WON'T LET ME DO

Play The Card Game 'War'
Play Chess
Play Puzzles
Crossword Puzzles
Rubix Cubes
Read for a period of time longer then 5 minutes or so in a sitting.
Play the game Stratego
Play most video games
Work on my car
Write(as in with a Pen or Pencil - I can't do it.)
'Sort' things 9 like laundry, whatever... anytime I try to organize, I start to stop breathing, get migraines and I go to hell....)
Have conversations longer then 5 minutes...
Roll a cigarette(I'm a smoke and wife rolls 'em for budget reasons... bad habit, very bad, I know...)
Open more then one drawer or cabinet at a time(Odd thing... I feel very odd if I'm shuffling through multiple drawers and things...)
Look for canned goods(Gets me choked up and messed up having to look for things....)
Learn to do new things with my hands(And basically, that's my limitation... the brain and body connection...)

I have avoided doing so many things in life simply to avoid the migraines and 'jerks.' I feel like I'm a woldly different person then whom I'd be if I didn't have epilepsy.

Not to mention the paranoia I get if I am standing on concrete at any given time (I try to wanna stay on carpet on the off-chance I have a tonic clonic, I want padding for my head, 'cuz I have a tendency to do headers.)

I've noticed a lot more recently though, that I get 'migraines' pretty much every other day. They're brought on by the same activities and critical thinking and coordination that brings on the 'jerks.' So over the years, I'm learning to NOT think in strategic manners, to NOT focus too deeply --- my end point? I feel like Epilepsy is almost my own personal experiment akin to 'Pavlov's Dogs.' He'd ring a bell - I get zapped in the head - same difference.

Your mind is like a muscle, if it's not used it can atrophy - I fully ascribe to that notion. So when I was a teenager, I could do everything on that list and fully enjoyed them -- (and no, that list is just a sample, the million little things I have trouble doing are endless...) But, the older I get the more concerned I grow, that whilst I was once like, 'Okay, I just won't do that...', it's now a permanent situation of, 'No, I CAN'T do that.'

And I don't like to admit I CAN'T do anything - but I have to, I guess.

I guess I'm struggling with accepting my own limitations -I wish I didn't have any. My easiest days? My dullest days. I have to put my mind on ice to have a day of peace and breathing.

Also, while on the subject, I used to have asthma as a kid and would stop breathing when I would get too focused, as well as stop breathing in my sleep -- could that have spurred my epilepsy into motion? Been a cause of it? I knew I was genetically at risk, since that's the diagnose creds of JME but... I dunno... I'm on a tangent.

Another thing I've noticed? I used to be brilliant. Now, I tend to 'ramble' and use words in an inappropriate context - I can't pluck from my vocabulary the ripest berry on the branch, ya know?

I'm turning 26 next month and just feeling old.

Don't feel like a spry young thing anymore who should be full of piss and vinegar.

I just feel like heavy years are taking a toll.

Sorry for being so sour, here.

Anyone know what I'm talking about?

 

[AndrewIrish]

And on a sidenote, I'm coming up on 5 years here registered at CWE!

 

[petero]

well I'm glad you're here and able to let it out. I have love for everyone here and in a way it's comforting to read of others' misery I've been having some tough days too. tomorrow comes.

 

[Nakamova]

I've been lucky. Epilepsy didn't knock on my door until I was 35, and I've been able to get it more or less under control with meds. So no major changes. There are things I can't do because of shoulder damage from the seizures, so I've had to adapt to that.

I have a cousin with Parkinsons. He is constantly having to create new ways to get his body to move, and workarounds to deal with losses brought by the disease. He (and CWE members too) inspire me with the way they cope with the more daily frustrations.

 

[nelly]

Hi AndrewIrish.
I feel that way too. I'm afraid of making a mistake and doing something wrong so, I don't try. and it hard to admit to ourselves I can't.
I tryed to journal and write down my thoughts, but I just could not handle what I saw on paper.
But- that's also depressing because I want to try new things. But I don't want to look stupid in front of others that I miss out on a lot of opportunities.

 

[SlimBlue]

Man I can totally relate on a lot of those things. Even tho my condition hasn't affected me to the same degree, I still get sour now and then- 20-odd years into it- and I hate myself for it, but we've got to let it out sometimes, right?

I'd never post this anywhere else (because most people would take it as arrogance) but I know what you mean about 'being brilliant'. Before I was diagnosed I was chuffed I was rated as a genius- not loud about it, just quietly pleased- and to lose those 10 or so points really destroyed me.

Every time I can't grasp a synonym, or knock up a pin-sharp analogy on the fly, every time I use the wrong word, or just every time I remember how fast I used to be able to think, it really brings me down.

I very rarely ever mention that to anyone, because I know it makes me sound like a jerk that I'm unhappy being in the top 10% instead of being in the top 5%.

But I *totally* know what you mean, be as sour as you want friend

 

[AndrewIrish]

Man I can totally relate on a lot of those things. Even tho my condition hasn't affected me to the same degree, I still get sour now and then- 20-odd years into it- and I hate myself for it, but we've got to let it out sometimes, right?

I'd never post this anywhere else (because most people would take it as arrogance) but I know what you mean about 'being brilliant'. Before I was diagnosed I was chuffed I was rated as a genius- not loud about it, just quietly pleased- and to lose those 10 or so points really destroyed me.

Every time I can't grasp a synonym, or knock up a pin-sharp analogy on the fly, every time I use the wrong word, or just every time I remember how fast I used to be able to think, it really brings me down.

I very rarely ever mention that to anyone, because I know it makes me sound like a jerk that I'm unhappy being in the top 10% instead of being in the top 5%.

But I *totally* know what you mean, be as sour as you want friend

Totally - I didn't mean to come off to anyone as conceited or self-absorbed in that statement - to me, it's fact. I have documentation, proof and testing to show that I was off the charts at one point - but I'm still sharp enough to know I'm dulling down. I et that YOU get it - but mentioning it, made me think that OTHERS might think me an egotistical crackpot or something....

In any case...

To kind of sandwich some more info, to see if anyone else gets this... it's this general sense of 'jitteriness.' The only thing I can compare it to, and this feels weird saying this, is back when I was 'normal', (non-epilepsy), I would drink a lot of coffee.... and one day, I drank a TON,TON,TON of coffee REAL,REAL quick... made me JITTERY, SHAKY, SICK, NERVOUS.... okay? Those are the words to describe it. I get that feeling everyday now. There are days I can't hold a cup in my hand 'cuz my hand shakes too much trying to focus on keeping it in my hand (cuz of an inpending jerk.)

I've been so jittery and shaky lately I've started thinking I have Myoclonic Dystonia - but then I'm like, 'Okay, why do I have tonic clonic seizures then?' I do too much research and have too little knowledge, lol. I'ma bumrush this neurologist on Wednesday and hope to god he gives me some kind of med for the myoclonus - at this point, fudge the TC's, they only happen a couple of times for me a year most years, unmedicated. I don't care about the TC's.... I wake up on the floor, bit my tongue and feel like I got hit by a truck, but after a couple days, that's the end of it. There are days anymore, I'd gladly have more TC's if I could just rid myself of this myoclonus and 'shakiness.' That myoclonus in JME (Which I strongly don't believe I have anymore, 'cuz if I do, I've got the Big Bad Grand Daddy of Myoclonic Syptoms - I'm getting into the areas of Dystonia and Parkinsons anymore on a reactionary and disabling level....)

I had a TC two months ago... not one since... I dunno... don't get me wrong... TC's scare the hell out of anyone I know who has seen me have them and they wipe me out... but they're not a big deal to me - I've got a hard head. I've cracked my head a couple times... but this got-damned 'action myoclonus', the migraines and the 'jittery shakiness' is what's going me in.

 

[AndrewIrish]

Also, show of hands?

Because I know, I KNOW - in my heart of hearts what I'm going through and exactly what it is, after 6 years..... should I just print this webpage out and show it to my new neruo and PRAy he hands me some meds?

http://brain.oxfordjournals.org/content/112/3/765

Every bit of research I've ever done, says about the only two miracle drugs that really kick 'myoclonus' in the butt, are clonazepam(Klonopin) and Pirecetam(a mostly European drug, from my understanding... American Doctors don't prescribe it....)... can I kind of fork it over, show him my records from a dozen ER visits and several failed attempts at being treated (I was on Lamictal, Dilantin and Phenytoin(same as Dilantin?) and Topamax AND Valproaic Acid at some point and NONE of them helped me at all... the Valproaic Acid ripped up my guts and gave me 'orange flavored' nightmare heartburn....)

I've never been on a prescription in the last 6 years for more then 3 months... and have less then a year total of time in a doctor and on scrips.... never have had a primary care doctor excedpt for a few months out of pocket, two years ago... then there was the latest doctor who accused me of being a drug addict when I honest to god lost the first bottle of 'ativan' he prescribed as a 'rescue' - and the ativan actually helped too... I was using it on a daily basis and it kept me on an even keel, kept me calm and life was beautiful for a bit...

In my 6 years of research, 5-HTP, Pirecetam and Klonopin are the 3 BIG BAD BADDIES to quell Myoclonus.

Anyone disagree?

Hell, I just hope the new neuro(if he takes me as a patient), at least writes me a scrip for something on my first visit... I'd hate to have the convo go like... 'I'm going through hell... and have been for years...' ... and he go and say, 'Okay, we'll reschedule another visit in 3 months and we'll setup some tests at this point...', 'cuz it took me 2 months to get into this initial appointment anyways.... at least in 2 weeks I finallly have insurance! Magical insurance! Blue Cross and Blue Shield of MA! First time I've had it in 6 years!

 

[girlwithadog]

Oh boy... I'm sorry you are going through this it really does suck. If Chou have read my posts you would see just how much epilepsy has limited me as we'll and its the small things. Oh by the way I will be 26 next month too July 27th I got diagnosed in April but since it all started two years ago its been a downward spiral.

I have the same issue with concrete. I get so paranoid I will avoid concrete as much as possible. Same think with file and wood floors. At one point standing put me in a huge attack. When my anxiety was at its worst I got the jittery feeling every day. Feels like you drank a case of red bull in a very short time period. Very uncomfortable. It has gotten better for me but I've been working really hard to get rid of the anxiety.

And I get the part about thinking too deeply. That triggers something for me and since all this started I haven't been able to do serious deep thinking for fear that it will provoke a seizure. Commotion is also a trigger. If more than one person is talking to me or a lot is going on around me I start to get the unsettling feeling and at some points simple partials so I try to avoid this as well. Which is very difficult when you have a 5 year old and two 90lb dogs.
What I wouldn't give to be the person I was before this all started... You really take things for granted and never expect to lose yourself in something like this... But you do and it makes the situation that much more frustrating. I'm sorry you are going through all of this but know ur not alone here. And my dad has schizophrenia as well but no epilepsy I'm the first in the family. I couldn't imagine how difficult it would be to see a parent with schizophrenia and epilepsy, I'm sorry for the stress this has put on you

 

[SlimBlue]

Blast them with the info- that's exactly what I have to do, it's pathetic..

I cannot begin to imagine how stressfull your condition must be, mine is mostly med effects now- chronic insomnia, having to *always* monitor everything I say to make sure it's not inappropriate, or too aggressive is just so wearying it's untrue.

Agreed, the seizures are almost nothing, compared to the hell that comes alongside.

My heart really goes out to you, and everyone here.

 

[AndrewIrish]

Oh boy... I'm sorry you are going through this it really does suck. If Chou have read my posts you would see just how much epilepsy has limited me as we'll and its the small things. Oh by the way I will be 26 next month too July 27th I got diagnosed in April but since it all started two years ago its been a downward spiral.

I have the same issue with concrete. I get so paranoid I will avoid concrete as much as possible. Same think with file and wood floors. At one point standing put me in a huge attack. When my anxiety was at its worst I got the jittery feeling every day. Feels like you drank a case of red bull in a very short time period. Very uncomfortable. It has gotten better for me but I've been working really hard to get rid of the anxiety.

And I get the part about thinking too deeply. That triggers something for me and since all this started I haven't been able to do serious deep thinking for fear that it will provoke a seizure. Commotion is also a trigger. If more than one person is talking to me or a lot is going on around me I start to get the unsettling feeling and at some points simple partials so I try to avoid this as well. Which is very difficult when you have a 5 year old and two 90lb dogs.
What I wouldn't give to be the person I was before this all started... You really take things for granted and never expect to lose yourself in something like this... But you do and it makes the situation that much more frustrating. I'm sorry you are going through all of this but know ur not alone here. And my dad has schizophrenia as well but no epilepsy I'm the first in the family. I couldn't imagine how difficult it would be to see a parent with schizophrenia and epilepsy, I'm sorry for the stress this has put on you

I swear to you - I almost broke down crying right there. Just to know that someone kinda 'gets it', you know. Thank you.... thank you very much. I'm a dude too who hasn't 'cried' since my Grandmother died about 7 years ago... that's how... much... it effected me... simple words...