Not quite sure where this goes...

[AndrewIrish]

September '08

Hey all,

I've been searching the internet for several years about something that's happened to me since I was 15 or so. I'm 21 now... it's something that's been more of a 'nuisance' then anything, yet I really need some people with good knowledge, for advice.

Let em give you a rundown on what I go through.

In layman's terms, because I don't know the medical terms and have never been diagnosed, because I have never had insurance or ability to get diagnosed, I believe I have a Reflex Epilepsy triggered by complex thinking, sequential ordering and general stress.

These are accompanied by jerks of my shoulder forward, or my arm jerking outward violently... it feels like I get a 1-second 'hiccup' in my brain and my body flails around for a second. And during times when I'm doing certain things, this continues happening... like something is misfiring, I keep 'hicuping' and jerking, usually my arm but sometimes my leg or so.

My triggers: (General because they seem to happen to anything, the myoclonic jerks have happened many times in the last 5 years, everyday.)

- Chess (Perfext example. Can not play it. Can not. Within a minute of looking at the board, everytime I try to think, I have a myoclonic jerk.)

- Paper forms (I have worked in a call center for several years now... everyday, I have to suffer through these 'hiccups' and... it's hard. A lot of the time, my arm will jerk and I scribble on a page and have to redo it. It's hard on me, my head hurts afterwards, I feel jittery... it's just... I can't fill out a single paper form with a pencil - I write anything more then my name, the jerks come. They come everyday, again and again and again... )

- Games (Video games, puzzles... anything where I have to think about the future and then try to form a mental strategy, I begin jerking. More violently then anything else I do though, with video games.)

- Being rushed, stressed, etc.... (Anytime I am in any type of rush or under stress, I begin to jerk. Not so much being yelled at or what have you, but when I self impose a goal for myself to meet, when I 'try hard' to do it, the jerks come... they sidetrack me, make it impossible me for to do things...)

I'm not having a petit-mal or grand-mal seizure or anything quite as dramatic, but over the years, this has become a hindrance to my daily life, I can't take anymore. I need help but without insurance, I don't know of anyway to get it. Usually I can avoid some of my 'triggers' but how do I combat triggers that literally prevent me from my complex thinking? I love strategy, I love formulating plans and focusing on an immediate goal - I can't do it anymore, though. The myoclonic jerks are violent, they're distracting to others and make me feel... wrong, somehow. Like I'm sick or something...

I mean, best self-diagnosis I can give myself is Reflex Epilepsy triggered by complex, sequential thinking with myoclonic jerks.

All I ever have though, are myoclonic jerks. Would that still be considered epilepsy? I'm sorry if I'm a bit of an 'outcast' here, I'm just looking for some help from somebody, I would appreciate what anyone thinks...

Also, because this has been an everyday occurence since I was 15, I'm 21 now... can constant, daily myoclonic 'jerking episodes' I'd call it, have any permanent damage to me or my brain? Am I hurting myself, somehow?

Again out in the dark, searching for a friendly hand...


March '09(Present)

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Well, some bad news I guess.

Two days ago I had my first 'Grand Mal' seizure.

Preceding it, I had been reading quietly, having my myoclonic jerks, and they wouldn't stop. Eventually I got a headache, got up, popped two Aleve, and then tried to relax and resume reading.

However, then what happened was one of the most truly frightening things I've ever experienced. My mouth slammed down, I couldn't open it, I couldn't open my own mouth, I was terrified... next thing I know I'm in an ambulance, people asking me if I know my name, date of birth... I didn't know the date, my name well, I got my date of birth though... I spent a few hours in the hospital, got a CT scan, bloodwork, what have you... came back clean. The ER doctor put me in for a referral in a couple of weeks to a local nerologist... any advice?

Thank god I was visiting at my mothers, I apparently collapsed or fell and woke her up. I seized for approximately 5 minutes. Full body shaking, mother states I couldn't blink through it all and afterwards I'd bitten my tongue(which stull hurts like crazy) and I'm still weak and achy 2 days later.

Also, for time being, I'm on a medication that's generic of Dilantin, I think it is. Anyone know about these pills?

Also, it's strange... as is evidenced it's been 6 months since I posted here, about my myoclonic jerks... with those continuing, and now this 'Grand Mal' I'm frightened. If this isn't Epilepsy, is it a brain tumor? I know now, something truly isn't right with me. I'm very frightened.

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That's really the only two posts I've made here, but now I'm fearful(don't take this the wrong way, btw ;D) that I'll be around here quite a bit more.

Those two posts are from my Foyer introduction, but maybe they're better suited here. I feel as if the myoclonic jerks have now progressed into something much more severe. This new medication, I've had those myoclonic jerks for years and years and now this Grand Mal? Anyone have good information I should take to this Neurologist I'm seeing?

 

[Meetz1064]

Check

the answer I gave you in the Foyer.....

 

[mommystar]

i know what you mean

I have gran mal seizures too and jerk almost on a daily basis. I feel like the doctor doesnt know what I am talking about when I explain it to him. I am sooo happy to know that I am not alone. What do you do about your jerks? Are you able to work? I gets in the way all the time. I was at my couins graduation , about one hour and it started, so I ususlly pop another pill scared that I will seize up. The doctor has tried to tell me your ae just thinking that you are going to have a seizure all the time you are paranoid. I wasntt thinking about seizures I was trying to enjoy my cousins graduation. I feel like they act like I am making it up. Is there tratment for it or do you just have to live life around it? I dont feel comfortable to go to work or anything and I feel like the dr thinks that I just dont want to work. I dont want to risk having a seizure and maybe die. scary scary. Thank you for posting what you did I feel much better knowing that I am not "paranoid" -Star

 

[RobinN]

Curious if there was anything between 0 - 15?
Illness, accident, ...?
My daughter has tonic clonic seizures, so I understand how terrifying they can be. She use to have about 6/mo when we tried her on medication. Now see is doing far better after making serious nutritional changes. Have you done any research in this area?

Do you have any other medical concerns? Some can be related I have learned. I believe you can begin putting the pieces of the puzzle together, and then begin to get relief. There are alternatives, and I hope you consider them if you consider medication.

 

[Bernard]

... I feel as if the myoclonic jerks have now progressed into something much more severe. This new medication, I've had those myoclonic jerks for years and years and now this Grand Mal? Anyone have good information I should take to this Neurologist I'm seeing?

Have you told the neuro everything you've posted here? It's fairly common with juvenile myoclonic epilepsy to start with myoclonic seizures and later develop tonic clonic (grand mal) seizures.

Dilatin is usually effective at controlling tonic clonics for most people if the therapeutic blood levels are maintained. My wife has not had good results with the generic formulations however. Since the patent has expired on Dilantin, the brand name version is not much more expensive than the generic. You might ask your neuro about writing DAW on the prescription to force the pharmacy to dispense the brand name if the generic isn't working for you.