June 17, 1988
Seizure - Dock’s Corner Tavern - Monroe NJ
First documented seizure that would lead me on my AVM journey
June 17, 1988
That’s a really long time. I would love to hear more about how you are doing now. It can be really useful to other members to see what the long term can look like.
Sharon from ModSupport
I’m doing pretty well, overall these days. I had a hemorrhagic stroke in 2012, it wasn’t unexpected because of the cumulative 2%/year thing. I did survive it physically, emotionally and psychologically (I think and the doctors think), there’s a bit of intelligence and memory loss.
There were some issues with seizures for a while but that’s generally under control because of the shunt that was installed when I had my stroke. I celebrated my 25th wedding anniversary in Dec 19 and my 59th birthday a month ago.
It hasn’t been easy but we all have our crosses to bear.
If there’s anything I can do to help, I can try!
Are you completely off seizure meds? I have trying to get off now after several years but it seems like I may have to take them forever
I am still on seizure meds Dilantin and Neurontin. My Dilantin dosage has dropped to 400mg/day though and I can’t figure out why. My weight has gone up , a LOT! Neurontin was required because my Dilantin was at toxic levels 20 years ago.
I don’t want to play with any of my meds unless absolutely necessary.
Hi, I’ll be 61 in two days. I had an AVM bleed at 14. Two crainiotomies. There were no non-invasive options so they were 7 hr operations with a very long recovery time. The scar tissue left me with epilepsy.
I was prescribed dilantin, tegretol, phenobarbitol, keppra, lamictyl, and probably some I’ve forgotten. The doses were generally ramped up until I was a zombie or very aggressive/violent.
I carry around plenty of emotional baggage but I’m learning to finally let go of the shame.
My seizures happen at night in rem about 3-4/yr. I’m a retired lawyer now driving pizzas for Dominos. It’s a good life. I’m one of the lucky ones.
Hi All, I doubt I’ll ever be off seizure meds but it’s worth it if they help and don’t turn me into a zombie. Everyone whoever lived is damaged goods. If we do our best, that’s enough.
As far as the emotions, that is controllable to a big degree, but it takes patience and a lot of work. There are lots of ideas/methods and the computer can be a big help.
For me isolation/loneliness were a big struggle. Lately I’ve begun to accept that it’s not shameful and actually enjoy solitude. Greg