six and a half year seizure free, then a big one

[paladin2]

Developed seizures as a result of micro surgery that removed most of my right temporal lobe. I had years of frequent gran mals too many turning into status seizures after a head injury.  Retired to Costa Rica for less stress and a problem dealing with the pace of just living in the U.S.  Doctors here did well and was six and a half years seizure free and felt I was almost recovering from the three month coma, 15 month rehabilitation learning to walk and talk and a complete change of personality.  I'd be lying if I said I was happy, but was getting along and suicide was put out of the picture long ago. The morning after a traumatic emotional shock (my parrot was stolen, his wings cut and was found, but severly in shock and trauma, but healthy physically.)  The morning after I was on the phone arranging appropriate payback for the animals responsible and had a big gran mal that turned into a status seizure. Mentally feel like I'm back to square one. That included severe memory and emotional problems. Is anyone out there qualified to tell me if this latest "event" is likely a one time thing or am I really back to square one, as I suggested before?  I'd even forgotten just how horrible, scared and just so so tired of fighting these things made me.  Is there a doctor or shrink or someone with knowledge out there with any advice?  I quite literally can't think beyond my next word and forget if it was this bad before.  Thanks for any comment or advice.

[Kev1960]

Hi...i feel for ya..ive been epileptic since i was 10 with pettimale then at 17 with granmale
im 47 now and have just managed to come up to almost 2 yrs fit free {august 13} its something that i am looking forward too...what a joy that would be.

ive always found that people that dont understand what pain we suffer, cause were treated like leapers..and left to sit out in the cold by many people...
WE ARE HUMAN BEINGS...
but we are the people still fighting a war !!! due to ignorance.. i have to take 8 pills a day although its stabled me for the best part of 23 months , ive also found the nasty side to it which is i can no longer use my hands...write !!! THATS A JOKE i cant even hold a pen sometimes...everything i have to write down , down to my shopping list has to be done by my p.c...i mean what sort of **** are suffering from ...

I JUST HOPE THAT ONE DAY..OBVIOUSLY NOT IN OUR LIFE TIME , BUT ONE DAY THEY WILL DISCOVER A CURE FOR FURTHER GENERATIONS AND THIS CONDITION IS WIPED FROM THE EARTH COMPLETELY..
take care all...
oh yeah one last comment , just to lighten the mood...i never put photo up cause my face has been hit bad in a van accident when i had a fit..!! [this is the funny part, i wont ever forget] WHILE IN THE HOSPITAL...THE NURSE SAID ''IF YOU HAVE YOUR TEETH WE CAN REPLACE THEM ?....how the bleeding hell did i know they had gone in the first place !!!! i had had a fit and was unconsious
TAKE CARE ALL

[seeksolice]

Dont do that!! Staying in bed is lame.

Careful on the cut back of valium, that could be triggering your seizures. Upping the dose of dilantin or getting on another med entirely may help alot.

I've heard dilantin- although tried and true- been around forever- isn't the most effective in controlling seizures.  Maybe this is the case for you.

If you dont mind using yourself as guinea pig, you know what to do. Message me anytime, I enjoy your presence here.  And my screen name? I'm seeking solice as well, if you read my profile you will understand. We all go through tough stuff, and I wish I could undoubtedly say "It gets better!" But, sometimes it doesn't-- or it has to get painfully BAD before it gets better.

[paladin2]

I don't know if I am rewriting this or if the one that just disappeared is gone, so a recap. I mentioned that you have a good screen name, because I suppose that's what I'm doing, seeking solice. Because I've been taking 600mg dilantin, 30mg valium and up to 150mg morphine a day since this whole thing in 1994 or 95. Cut back to 500 dilantin and 20 valium but that was months and months ago. I unfortunately know all too much about status seizures and except for my parrot Max I live alone.  A risky choice but mine.  Good neighbors help, make sure I take the meds, stop by a few times a day and what they can, but I wasn't afraid anymore and now I am again and it just really *****. Thanks for taking the time to offer your insights.  I think I'll just stay in bed for a year or two.

[seeksolice]

I may not be a nurse or doctor, but growing up with two epileptics my whole life, my first thought in reading your post was this:

It seems like as an epileptic, if you are seizure free for a time, then have a seizure, that unfortunately lowers your thresh hold for having another seizure, and CAN create a seizure pattern unless it is properly controlled.

Status seizures are dangerous, are you willing to be on meds? Or do you have a live in partner that can administer fast acting meds when you have these seizures?

I hesitate to recommend daily meds, because when you get on them for a time, then abruptly stop, that can cause status seizures as well. I'm sure you know that though. Good luck to you, and thanks for commenting on my post. I appreciated your feedback.