Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
I'm hoping for a bit of a discussion, more than advice. I discovered I had eplipsy about 3 years ago. I seem to have lost some things. Please bare with me, I'm looking for the right words. Confidence is one missing piece. I find that I am afraid of MANY things now, that I never was before. I seem to have lost some of my sense of direction (or internal guidence may be a better phrase). I travel ALOT and have rarely needed more than a general idea of location to find places. Now, I can't seem to follow simple directions, maps or even street markers, without great challenge. I seem to have lost quite a few pieces of my memory, as well. I think the loss of cognitive skills frighten me the most. I know the seizure scarring is in my left frontal lobe, and that part of the brain is responsible for cognitive, memory, emotional and many other neurological controls, including depression, etc. I guess the thing I'm hoping to hear is that many of these things can be "relearned, or rediscovered, or reprogrammed" with time. Have you found this to be true?
I have "Complex Partial" & "Myoclonic" epilepsy. I feel you on the memory lapses. "Complex Partials" can put me in a fog most of the day. So don't feel alone on this one. Having Epi. for 20yrs or so makes my memory feel pretty "picked at" & I have many memory gaps. I also have neurological damage causing my Epi., suspected MS. So there are allot of things widdling away at my memory.
I found 2 great sites that have "brain games" for people with these kind of memory issues. If you want the web addresses let me know.
Take care,
Stay sane!
Eventually he tried Trileptal on me, and it was like a light-bulb coming back on in my head! I was able to think and remember and function like I had before the seizures took over my life. I too have only been diagnosed for 3 years, and I have Complex Partial and Myclonic epilepsy just like Belue.
I used to sit and do sudoku puzzles to try to keep my brain functioning while I was going through all that, and some days I could do hard ones in a blink of an eye and other times it would take days to work through an easy one. The days when I couldn't think very well I would try to just take a break from it and be kind to myself, but I was always afraid my brain would stay that way. Since the doctor switched me to Trileptal I've felt like I've been more awake/alert than I have in years, and my sense of direction and understanding of things has improved again. :)
Medication does play a Big part in short term & long term memory loss. But, w/ proper diet/supplements & 'brain exercises' this side effect can be lessened/eliminated. If That doesn't help, then, it really is time to ask about another drug/AED. OR if seizures are controlled, Ask Yourself "is the side effects worth the control?" & learn to Adjust. A Lot of PPL, including me, have learned to keep note pad/chalk/dry erase board/pen/comp, handy. :)
As for Loss of Confidence. That Depends on You & how you let this Disorder affect you! I can tell you that w/ Education, Time, Patience & Support you will Regain that part of your Life. Just Take It One Day at a Time. But, Don't let Epilepsy Rule! You Are Still a 'Normal' Person! Whatever 'normal' is! :) Talk to us & Keep Learning! :)
I have left Frontal Lobe Ep, too. I learned to adjust. Cuz, seizure control Was More important, to me. Shoot, I would have said "No Way" to a Motorcycle ride in my 3rd year. :) But, I have been waking up every morning for over 55+ Yrs. :) And went from AZ to Montana on the 4th of July. :)
I was a single Mom, when Epilepsy re-occurred. I Lost my Confidence to even Work &/or raise my own child. :( It took me 10 Yrs to find a med that worked & a Good Man to support me. I don't recall a Bunch from my 'Trial & Error Days'. Only, a faint memory of 'Family Support' & Living one day to mths, in a 'fog' & the next like 'nothings wrong'. Missing my Child.
After That I started Learning! I know now that Meds &/or Epilepsy do this! My Pheno's are Notorious. I am sure there is some scarring from 'episodes' that affect me. But, DRS didn't tell me. I had to learn. And since I've been learning & talking w/ others, I Have regained my 'sense of worth'. My Confidence. I ain't letting Memory Issues, mood swings or Epilepsy, Bug Me, Anymore. :)
Course, after sooo many yrs on this blasted med, I know my time is near, to go thru 'trial & error' meds/treatment, again. But, I will deal w/ it, when the Time comes. :)
Sorry for Ramblin. :) It's hard to put 30+ Yrs of experience in one paragraph. :)
BTW: Yoga/meditation can help, too. Especially w/ the 'emotional roller coaster ride' . Can even help decrease/eliminate seizures, by relieving Stress. :) Let me know & I will post a link. :)
Love Candi
Darleen
Thank You! :) I'm glad our shared stories Helped You. :) Just keep Learning! :) You'll be OK! :)
BTW: I posted info under Recommendations for Seizure Diary/ Journal. Please start yours Today. And take it w/ you to All DR appts. :)
Love Candi