TC free for a year and a half...

[AndrewIrish]

Well, lately.... I've been nearly completely symptom free... the myoclonic jerks had receded to almost non-existent... maybe through my learned behaviors... and no tc for a year and a half now... I did wake up this morning with a huge bunch of myoclonic jerks tho and am even now having a very strange piercing headache.... and been very jerky all day... but without meds, I've been TC-free for 18 months... aside from one questionable instance about 8 months ago... so i'm feeling good... i really am starting to believe I've made it through the TC phase of what ever is wrong with my melon...

 

[KarenB]

That's wonderful to hear, AndrewIrish. Do you keep a journal of what's going on (like foods, drinks, activities, stress, illnesses, etc.) around the time when you're having episodes? You might be able to identify a trigger. We identified a bunch of triggers that way (TV, cold, eggplant, etc.), and this also helped to figure out which supplements and dietary changes worked best. I keep a little ongoing journal with 3 columns -- one is foods, activity, illness, one is any seizure activity, and one is for any changes to meds or supplements. Now that Jon's been seizure free for almost a year, I've gotten pretty lazy about keeping up with it, but it was a great tool when he was in really bad seizure mode.

Have a blessed New Year!

 

[chop456]

What a great update! Here is to a great 2014!

 

[CQ:)]

That's great news AndrewIrish

 

[N Sperlo]

Good to hear.

 

[Bernard]

18 months TC free is excellent, but based upon my wife's experience, I wouldn't set expectations that you will never have another TC ever again. That sets you up for a huge emotional shock should you have one again (and possibly leads to complacency in managing your routine the way you should to maintain your seizure threshold).

Take care and best wishes for an awesome 2014.

 

[qtowngirl]

18 months TC free is excellent, but based upon my wife's experience, I wouldn't set expectations that you will never have another TC ever again. That sets you up for a huge emotional shock should you have one again (and possibly leads to complacency in managing your routine the way you should to maintain your seizure threshold).
Take care and best wishes for an awesome 2014.

:agree: big time.

18 months is wonderful, for sure, but trying to put ourselves close to the frame of mind of 'i should be home free' is, like B says, a set up. in 2008 i had been 4 years, 11 months, and 19 days w/o a grand mal. it had been so long i can't put into words the devastation when i came to in a ditch.
an e life without meds is also a risk. again, great about the 18 months but unfortunately no matter what we do/don't do there is no cure-all.

 

[Nakamova]

The meds have kept me free of tonic-clonics for several years now -- long enough to make me feel a tad complacent. But a recent EEG was a wake-up call. It showed that my brain is still spewing out abnormal brainwaves, so no chance of remission, or going off meds.

Andrew, it's great to hear that you've been doing so well! I hope you continue without tonic-clonics, and are able to keep the myoclonics at bay too.

 

[denverboz]

:agree: big time.

18 months is wonderful, for sure, but trying to put ourselves close to the frame of mind of 'i should be home free' is, like B says, a set up. in 2008 i had been 4 years, 11 months, and 19 days w/o a grand mal. it had been so long i can't put into words the devastation when i came to in a ditch.
an e life without meds is also a risk. again, great about the 18 months but unfortunately no matter what we do/don't do there is no cure-all.

Damn! Four years! That sucks! So when you say you came to in a ditch, are you saying you were driving and did so, or just walking along and fell into it?

I started having TC seizures about five years ago, wrecked my truck on a pretty busy highway here in Denver, miraculously didn't get hurt, or hit or hurt anyone else. Thought I was never gonna drive again after that. But than I went 21 mts. without a seizure and started to think , well maybe I got this beat and I might be able to once again drive sometime in the future. And than BAM! I started having them again, one every two months like clockwork. I finally came to the realization it was probably likely I would never drive again. At least on any permanent every day thing, if indeed anytime at all. And being a carpenter it pretty much took away my livelihood.

Looking on the bright side of life, I do live in a big city (Denver) that for the most part has a damn good mass transit system, there are some great hospitals, doctors, and resources for people with epilepsy, and I have a saint of a gf (whom I live with) that has gone through a lot because of my seizures.

Now if only I could find a way to replace the income I had lost it would be great, all things considered.

 

[qtowngirl]

Damn! Four years! That sucks! So when you say you came to in a ditch, are you saying you were driving and did so, or just walking along and fell into it?

11 days shy of five years actually. devastating to say the least. it's weird even looking back at that time b/c i truly had no idea what was really wrong with me. it was me driving; i work on the road weekly and was out and about doing my thing on a wednesday morn. mid-november, beautiful and sunny, and i wasn't paying a ton of attention to the one i'd had while getting dressed earlier - as i didn't know it was seizures (misdiagnosed years prior with ptsd). thought i had a ptsd attack, got it over with and hit the road (drove to a dif city an hour away).
about 1.5 hours after getting there, was driving up a hill and had another attack, la dee da. last thing i remember was cresting the top of the hill (lucky to be alive really as logging trucks come down about 3 per minute at 120km/hr, woulda been head on).
you and i get it on the luck thing. i hit no one (tho my car weaved into oncoming around a big corner in front of an elementary school), then rolled into a ditch on opposite side. waking up surrounded by alot of cops, a firetruck and guy bent beside me asking my birthdate?... hell x1 million.
found out after that it started with a simple partial, which changed everything for me. never did have ptsd.
since starting to have g.m.'s in 2003 i've lost my license 7 times b/c of a grand mal, and now after surg am to be getting it back in a month (surg was 5 months ago today), and NEVER want to go through it again. unfortunately i don't have the luck of hitting the bottom of the barrel again. live out in the country, and being self-employed for 17 years i have to drive, at this point can hardly bring myself to rely on others one more day, gut wrenching. and my specialists/hospital are 8 hours away, even my local doc isn't close enough to walk to. no transit either. :banana: good times!

best of luck with your szs my dear, and putting up with the daily struggle.
nat.

 

[AndrewIrish]

Sorry for late reply guys....

All love and thanks for all the kind words and encouragement.

Still TC-Free but the myoclonics have crept way back in... I'm under a TON more stress at work and last week I almost seperated from my wife... needless to say, I'm under an absurd amount of stress... I had a very very strange sensation for about 15 minutes today at work that felt almost like what people describe as an 'aura' that kinda fraked me out... I felt like I'd forgotten something and couldn't remember what it is and had a sense of dread... couldn't shake the feeling... i was absolutely confused, certain I'd forgotten something (like leaving an oven burner on), but had simply stepped away from my desk at the office... dunno... maybe nothing... my jerks were real bad today... had to step outside a few times and get some air and sit down on a bench to calm down.... but even under about the greatest load of stress I can imagine... still no TC... it's a good sign... I am getting tired of my boss looking at me like I'm an alien when I have 'jerks' in front of him (speaking face-to-face is apparently by biggest 'myoclonic' trigger now for reasons unknown...)