Anyone here have TC's everyday or week?

[AndrewIrish]

Hey - I was thinking about this for a while now. I have juvenile myoclonic epilepsy an only very rarely have tonic clonic's but... Are there people here who have tonic clonic's everyday or every week and If so... How do you manage it? Every time I've ver had one it feels like I've been hit by a truck afterwards and my tongue is eviscerated for weeks - to have tonic clonic's continuously seems like it would be a horrible quality of living... But (luckily and gratefully) I don't have that perspective. I only have them when I am sleep deprived or heavily stressed. Just a question In. Throwing out there and I don't mean to insinuate an 'my epilepsy is better than yours' by the way- just curious.

[Rae1889]

I used to average a tonic clonic a day. (my theory behind this was a reaction to Gabapentin)

Now my tonic clonic seizures are about once a week, once every 2 weeks if Im lucky. I pretty much just lye in bed the whole evening, and if its during the week, I still get up for work. I kinda ticked my last work place off by calling in the next day if I had the seizure in the morning or while I was sleeping, so once the controller left my boss "layed me off". which was a bunch off bull.

So I literally try to tough it out as much as I can. I have 4 other people at this work place with seizures, or some form of a disability so they take it easy on me on those days. I called in on Friday because i literally couldnt move (todds paralysis) so that just had to happen

[Bernard]

My wife went through a period of time when she was having a tonic clonic once a week. It was pretty rough. You can find all the gory details in the blog if you dig through the older posts.

[Loopy Lou]

Mine really varies. Sometimes i can have a couple in a week and sometimes i can go a couple months without one. I have partials pretty much every day though.

[Eli]

When I worked I had several a week. When I attended college on campus I had several a week. I haven't driven in a very long time; but as a passenger, if we are in the city, on roads/highways/interstates with average traffic I usu end up having one. Basically, noise, lights and alot of activity = t/c for me.

I give my current dosage of keppra, the fact that I rarely leave the house, I'm not on the computer as much, i don't watch alot of tv, I maintain a strict diet and routine schedule, I stay out of the heat and I keep the temp in the house at 65-67 degrees...the credit for less t/c's. I still have several a month tho.

Given those factors I am currently down to an average of 5.5 seizure a week and mostly partials.

But yes, having them alot makes me weak, confused, exhausted and living with too many migraines.

[SassySarah]

Initially when my tonic clonics began (days after a spinal nerve block) I was hospitalized because mine cluster if not stopped. Despite this I was averaging multiple seizures each day. Robaxin and Klonopin combined with increasing my vitamin deficiencies got me to average one every three days (sometimes everyday then a week break, other times more regular) Depakote seemed to aggravate my system and result in a slight increase in seizures. Due to back issues (herniated discs and a dysfunctional SI joint) my neurologist and pain specialist tried Topamax which turned me into the walking dead, Exasperated myoclonic disorder, which increased tonic clonic activity to the point I wasn't supposed to leave the house without being in a wheel chair. When that drug was discontinued my psychologist noted that not only did I have constant memory loss (whole conversations, visits, days were missing), I also no longer had any abstract thought process. Everyone was weary of a new medication given my record, however my memory was being affected with each seizure. We first increased the klonopin which gave me very slight improvement (average every 4 days). We then added tegretol which I have been on since April. The generic immediately had issues which the neurologist and pharmacist agreed may be fixed by name brand. We have since been VERY slowly increasing the dose and I haven't had a tonic clonic in over 30 days! I do have a major problem with aura/petit mals not sure of the term where I have very slurred speech, I can't type messages that are legible. I say it feels like my left brain slowly begins turning off. Like most of my seizures it clusters and lasts for hours. Sometimes this behavior leads to more (sometimes I wonder if it followed something I don't remember. I