Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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

Submitted by txrhb1 on Thu, 2006-08-17 - 00:29
I would definitely say that 4 times a week, even 2 times a week, is just too much, and should certainly warrant a checkup with a good doc. I can certainly relate to the absent mindedness, clumsiness, etc. I also suffer from major depression, and am on medication which helps most of the time. And memory? What is memory? I feel like it is gone on most days !! ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

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

Submitted by 2spacey4me on Thu, 2006-08-17 - 08:13
well, thank you for the response. i tend to be one, i guess who likes to make excuses for a lot of these symptoms. (ex): 'oh, it's just sleep deprivation', or 'oh, it's just normal. everyone deals with depression, and some absent mindedness'. maybe even now, i still make excuses. i mean, how do you define what's somewhat normal for anyone between what might be a real problem? i have no problem admitting that i probably need meds for this slight epilepsy problem i have, but is it really that bad for me? i don't wanna be a hypocondriac about this. do you think i'm being a hypocondriac about it all? i really am curious to what all's going on. it seems that no one else in my family has been looking into this. my family is all about just 'getting things done'. it's all a matter of mind over matter. if that's true, then i guess my problem is that i just suck, and that i'm just plain out no good and lazy. i get motivated sometimes for a really long time to going into the state of mind of just not wanting to do ANYTHING, talk to anyone, go anywhere and just hating myself, cuz i can't be like the rest of my family. my husband's really my only support. but, even at times, i feel as though he thinks i'm just dumb. so, yeah, i wanna just make sure for sure that i really have a problem, so i can have proof of it, so i can show my family that i'm not crazy. or am i? i've already been told by a couple of the docs i've seen that i am epileptic. but, it seems i can function in life for the most part, or am i functioning like i'm supposed to be? i know-so many questions. ???:( Serena

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

Submitted by panther on Thu, 2006-08-17 - 03:29
My husband has Grand-Mal and Chronic Partial Seizures. Currently uncontrolled by medications but at one time controlled until a year ago where he had a grand-mal and fractured his skull. That increased his partial seizures. The added a third medication to the two he was already taking, it made him a bear to live with. We are currently working with the Neurologist for a new med that wont make him spacey. there are so many medications out there. Dont give up keep trying if your husband is there for you keep talking to your Dr until you get it write : )

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.