Myoclonic Jerks severely limiting ability to talk...

[AndrewIrish]

Hey all,

I'm a well-documented case but something struck me today; I don't talk.

Now don't get me wrong - I was never a 'small talker' and was a bit introverted but I realized last night when I was talking with my wife - she really feels like our marriage is falling apart because we don't have conversations or talk anymore... and then I realized... outside of my job in a call center where I give practiced responses which are nearly autonomous... I can't hold a conversation anymore - at all. To anyone. My myoclonic jerks have become so bad that about 30 seconds into a conversation with someone, they begin effecting my speech and causing an isssue, so as a learned behavior... I've well... I've become very quiet.

My wife thinks we're drifting apart... friends and family don't think I care... it's just too stressful and too hard to actually have a conversation. Also noticed I have another new big 'trigger' for the jerks - reading anything on my iPhone - reading on the IPhone for more then about a minute causes instant jerks... I don't know if it's because of eye-strain or whatnot... usually I can read on my big PC for almost 15-20 minutes before having the jerks too bad... don't know what to make of that... so I had to stop using my phone alot... or using it only very briefly...

I want to talk - I find myself most days wondering what it used to be like to live without these 'jerks', how free I must of been... now, it feels like I've always had them, I'll never get treatment and it's a very 'blue' day. I struggle every minute of the day with an invisible illness and like today at work, I wanted to leave so bad because the jerks were so frequent and I had such a headache and build up of pressure in my head... but knew if I left, my wife would only be like, 'Why'd you leave?' I'd say, 'the jerks' and she'd look at my slant-eyed and be dissappointed... almost no one understands exactly how severely these can disable me in every way...

But there's a key to these jerks, I know there is. I drive just fine... only a couple times in many years of driving were they a factor... I can physically talk all day long in a call center... so it's proven that I can get around the jerks with enough practice so that things become 'automatic' - if I don't have to 'think' about what I'm doing, the jerks recede. I think I have to begin almost like a physical rehab, a retraining of my mind, so that common small things become so much in the background of my mind, I don't notice I'm doing them. I have to trick my brain.

I don't know how to practice it though without creating some very, very hard days for myself on top of everything else I do... it's hard... I'm one of those people who will never have access to a doctor, I've come to accept. There is no help to ever have - I exhuasted every resource and contact 20 times over... I give up on ever being treated... now, it's just about 'managing' and working around this quirky, rare malady I have.

It was a hard day.

Man... I'm such a Debbie Downer....

 

[Nakamova]

Hugs to you Andrew. I hope you can figure out the key to the jerks -- I think you're on the right track.

I have to begin almost like a physical rehab, a retraining of my mind.

That sounds like the way neurofeedback works. It has helped some people with myoclonus (see http://www.eegneurofeedback.com/Epilepsy2.htm). Maybe there's a practitioner somewhere in your area who would take you on for free or at a discount?

Or maybe you can come up with the right routine to make your brain behave. Have you tried singing your words instead of talking them? I know that may sound odd, but singing can use a different part of the brain, one that may be less susceptible to jerks.

 

[C0urt]

Other people go through it to. I have a jerk that gets worse when I am hungry.
I skipped breakfast this morning, and I was sore. so trying to sit through a meeting was hell.

Wow, after reading your post in the other thread, i feel like I almost wasted my time.
My respect man.

 

[N Sperlo]

I'd bet it becomes a snowball effect. You feel the jerks start, then all you can think about are the jerks, and then you have more. Does any stress have an effect?

 

[AndrewIrish]

Yea, stress is a major effect.

Plus Sleep is killing me as well... I have a tendency to be very anxious and have trouble sleeping.. and I know if I get less then 8 hours of sleep a inight, the jerks are a true new level of hell the next day... but it's every day... im starting to think I'm insane maybe... maybe it's just some neurological tic and I don't have epilepsy at all anymore? I'm starting to think I'm just a nutcase...

 

[C0urt]

nah, you are only as insane as you and the voices think you are.