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plz take the time to read my story. i really need some support....

Tue, 08/15/2006 - 04:53
when i was younger, i was in a car accident, had a very bad head injury and went into a comma. i had all memory loss, had to have swollen brain tissue removed, and was put on phenobarbitrol for a yr to control seizures. i think i was a little under 2 yrs of age at the time. i had to relearn everything. throughout my childhood, i always experienced these indescribable feelings of weirdness (like i was in another land-feeling kinda sick also). i never told my parents, cuz i did'nt know what was going on with me, much less how to even describe it! i thought it was normal. throughout the yrs, i had fainting spells also. i remember this time i had to stand in a corner, and was seeing this candy cane-like object in the corner i was in, changing all kind of colors. after i was told to get out of the corner, my step-dad was scolding my brother and i,and all i really remember was, 'um, what are you saying???' next thing i know, is that i wake up and am crying my head off, cuz i don't know what in the hell happened to me. my mom was patting me down with wet rags, and i was scared and felt embarrassed and very stupid-very dissoriented! i continued to have brief fainting spells during the yrs, along with those very weird, uncomfortable feelings. nothing was ever really brought up of concern about it until about 4 yrs ago, when i was 8 months pregnant with my son, and had a grand mal seizure. my husband was there to aid in my assistance. i remember waking from this horrid thing, that i had no recallation of, other than a strong jerk of my head prior to it happening, and did'nt remember where i was, who my husband was, who my child running through the house, frantically was. so, i go to the hospital, still very dissoriented, and very incoherent. they prescribe me dilatin and tell me i'm epileptic. i'm still confused. what??? i'm asking myself. what's wrong with me??? i stay on dilantin till a little over i had my baby. the side affects of being sooo tired were too much for me having to take care of a newborn. so,of course, i get off the med abruptly. a yr or so after, chronic partial seizures continueing (just like it was that previous yr med free,and my whole childhood), i decide to just go ahead and go back to a neuro. besides, i was'nt really concerned about the disorder, and did'nt want to see that i even may have had one at that time. so, i'm diagnosted wtih epilepsy. i take zonegran. this made me lose an excessive amount of weight to the point of being worse than anorexic over a period of time. they did lower my dose. but, overall, i was feeling a burden to my husband and just decided to get off of it all together. gosh! the price of the doc and meds were outrageous!!! so, i think: i took a burden off of him. i have'nt been on any meds since about a little over a yr ago. my chronic partial seizures of course, have returned way since then, and still continue, maybe even up to 4 times a wk. that for me, anyway, is an extreme increase in seizures. i guess, i was wondering if anyone thought of whether it'd be importent for me to get back on meds for this. i really don't like to feel like i put my husband out. the docs already say i can't drive as it is. my husband is very supportive of me taking care of myself. but, i just feel so stupid a lot of the times. i ask myself what good am i to anyone feeling so dissoriented all the time. i don't even take meds, and i'm very absent-minded, forgetful, and just spaced out so much. if anyone has gone through a similar situation, dealing with chronic partial seizures, and felt severe incompetence like me, plz give me some feedback. i sometimes just wanna diagnose myself as 'stupid',and forget about all of this-going back to the doc and all. it's so expensive. -just a new girl looking for some support. p.s. bottome line: do chronic partial szrs ever provoke enough risk to stay on a med regimen, or can i just deal with them?

Comments

Re: plz take the time to read my story. i really need some supp

Submitted by fzMousie on Tue, 2006-08-15 - 09:09
((hug!)) I sometimes just wanna diagnose myself as 'stupid',and forget about all of this-going back to the doc and all. You and me both, girl!! The answer to your bottom line question is yes. My neuro told me that when you have one seizure, it teaches your brain how to have another one. The more partial seizure you have, the more likely it becomes to start suffering from generalized seizures. I am ridiculously absent-minded and forgetful. I keep a little pocket calendar with me because if it isn't written down, you just know I will forget about it. It's insane and so frustrating. Don't give up on going to the Dr. If you can, I would try find an epileptologist. I think that is the only way you are going to get the help and answers you need. Perhaps your doctor can help you deal specifically with the memory problems. I know for myself the memory issue and klutz factor are the two biggest problems for me. If I could get rid of them, I would be so happy. My neuro promised the meds would help clear me up, but so far no go. Good luck. You've found a good place here. :)

Re: Re: plz take the time to read my story. i really need some

Submitted by 2spacey4me on Tue, 2006-08-15 - 09:32
((hugs more)) =) aww, thank you for the feedback. i was beginning to think that since i had a long story posted, that ppl were thinking i was crazy. lol i know what you mean by that clumbsiness!!! i'll just be walking through a room, and i'll sway to the side abruptly or just about fall, or try to get up off the couch (something so simple), and fall back down into it. ppl ask me what i've been drinking. lol i just tell them orange juice, that's all. ha, ha. i gotta maintain a sense of humor. lol this clumbsinesss with me happens everyday! it makes me feel so retarded. so, i've never been to an epileptologist before. what's the difference in them and a neurologist? don't they both specialize in the same treatments? here, lately, well,over the past yr, i've just been living with all these symptoms and side effects of this disorder, and just deal with feeling innadequet, stupid, and being judged on top of it all by some that i'm nothing but just nieve or dumb. ppl have no respect for this condition. anyway, thank you for the support. everyone here, seems so sweet, and compassionate. ((hugs))

Re: plz take the time to read my story. i really need some supp

Submitted by ritab2002 on Tue, 2006-08-15 - 14:50
Welcome, 2spacey4me, (((((hugs))))) I have had one Grand Mal seizure and have complex partials seizures, also. My neuro also told me that it is important to treat as no action may induce more or even other types of seizures. So far and it has been one year for me (2 different meds) I have realized in a big way that we all react very differently to the meds. A miracle for one person may be a disaster for another. You need to try and work with your doctor to try and find the one with least side effects and best in controlling your seizures. Welcome also, to the forgetful, at times absent minded and clumsy club. I get so frustrated with not being able to recall the right word or event at the right time. Recently, I was talking to a friend who does not have "E" and she was having the same problem and could not recall nor properly finish a story and getting embarrassed and frustrated. I laughed and gave her a big hug and said Thank-you!!!!. She looked at me confused and I said,” you just made me realize that all people have this sometimes,” since then I don’t take myself quite so seriously.

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