What's a long Tonic Clonic?

[AndrewIrish]

Hey all,

It's been a while since I stopped by.

I have JME(Juvenile Myoclonic Epilepsy), 99% of the time just dealing with bad and constant myoclonic jerks... but in the last 6 months I've now had two HUGE Tonic Clonic seizures..... my last was Monday. I was proof reading some writing I'd done on the computer and then BOOM... it was early in the morning, but not much of a big deal because I work 3rd shift. I am told I felll out of my chair, violently convulsed and then came out of it for a few seconds. (This is secondhand from my wife whose first time it was EVER seeing me have a TC and it freaked her out.) Well, after about 6-7 minutes of convulsions, I stopped for 10 seconds and jumped like a laser to my feet(No memory of this.), and then imediately went into more convulsions, smacking my head against my fridge during all of this and continued to convulse for about another 10 minutes.

So all in all, about 15 minutes of continuous convulsions... the TC's I've had in the past only lasted about 5 minutes, I'm assuming... was this just building up or do TC's over time.. get worse? My wife ended up calling an ambulance and I ended up getting an iv drip of phenytoin at the ER, then sent on my way. I'm scraped, cut and bruised to all hell all over my body, my tongue is in severe pain - bit through it... this was the worst TC of my life.

I hate that fraction of a moment, right before you go into it, where you sorta know it's happening. It's what I kinda imagine a stroke might feel like... I have a vivd memory of moving my arm and it not responding the way I wanted and me going, 'Oh shit...'

Now I have noticed a trend - my myoclonic jerks ramp up right before I go into a TC - but I have jerks all the time so it's hard to pinpoint when they're an early onset of a TC or just normal... wish I had an 'aura' to warn me.

In anycase, how long is an average TC? Is 15-20 minutes of continuous convulsions going to permanently damage my brain? Considering this was the strongest ever, so I have more of them more frequently coming, you think?

Any advice is appreciated because I never, ever want to go through THIS type of 'hit by a truck' TC, again.

 

[Kaitybugsmom]

How very scary!!

Our neurologist told us any TC that lasts 5 mins or longer, or any seizure that is backed by another without our daughter regaining consciousness is 911. Our daughters TC last about 3 mins and thats long enough! I couldnt imagine anything longer than that.

 

[epileric]

I agree with Kaitybugsmom. Many people consider a seizure status epileptics after 5 minutes. According to Wikipedia a seizure can be considered "status" after 30 minutes but treatment is started after 5 minutes

Status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes,[1] or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes. Treatment is, however, generally started after the seizure has lasted 5 minutes.

Status epilepticus

 

[Cint]

Now I have noticed a trend - my myoclonic jerks ramp up right before I go into a TC - but I have jerks all the time so it's hard to pinpoint when they're an early onset of a TC or just normal... wish I had an 'aura' to warn me.

In anycase, how long is an average TC? Is 15-20 minutes of continuous convulsions going to permanently damage my brain? Considering this was the strongest ever, so I have more of them more frequently coming, you think?

Any advice is appreciated because I never, ever want to go through THIS type of 'hit by a truck' TC, again.

Maybe that ramping up of the myclonic jerk right before you go into a TC is an "aura". If you can feel any type of seizure coming on now, that is a "warning before the storm". I've had SP (which are actually auras) CP, and TC's. Usually, the TC seizure only last 2-3 minutes, but several times I have gone status and 911 was called. Those seizures lasted longer than 5 minutes and I had been ill on one occasion and the other I had an allergic reaction to a medication. And one time, my daughter had to call 911 and she was only 7 years old at the time. Think how frightened she must have been! No one should have to go through this or witness it either.

 

[AndrewIrish]

Wow

I thank you for the advice guys and Cint,

Wow, I can't imagine going through this with children. I'm 24 now and there's beginning to come rumblings from my wife to get with the baby-making.

Luckily, TC's are VERY rare for me. Usually I go about a year between them. What I'm worried about is the day they come more frequently(A time I hope never comes.) The myoclonics are so often for me(hundreds of times a day), it's futile to try and use that as an 'aura', but I get what you mean. They do foretell it a bit - I just have to hide myself away if I see them getting too rapid and out of hand in the future.

Maybe another quick question -

As long as anybody can remember, was there ever a time when your TC's began to become more frequent? Have htey been sporadic or constant your whole life? Right now, barring one some months ago, my TC's are running annual like clockwork - I'm having a HUGE one, once a year. Which I feel VERY grateful for, as I see how often others have htem on this forum - but... is the rate of TC's very constant throughout life or does it change?

 

[Nakamova]

When I was unmedicated, my tonic-clonics began happening more and more frequently (once every 6 months to once every 2 months, to once every month) -- one reason for my decision to go back on meds.