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marcibarnes posted:
i found out that i had epilepsy when i was 29.
i dont take meds. i tend to forget alot. i have no insurance so i dont know how to get meds...i would love to have some help, but i dont know where to turn.
i can tell u this the first meds i was on totally sucked cause i felt like a zombie!
dont know what to take to get better. i have broken teeth and cant get that fixed ...sorry to complain but my head is getting worse. would love any advise!
silvettig responded:
Hang in there, There are alot of people on this site that will be able to help you. Have you been to you local D.H.S.? Still you will get more than enough help just by talking to people on this blog this morning> Good Day.
dancer86442 responded:
Good Morning Marci,

Welcome to Epland. I have several questions. If you don't mind. :) How long have you been having seizures? (My daughter's started at 29, too) Do you Know what Triggers them? What type of seizures?

You have several Options. :) As silve said, "Department of Human Resources" AKA Dept of Economic Services. Or the Epilepsy Foundation (Site posted under Resources) Or Find the nearest County Hospital!

OK, so your 'first' round on meds didn't agree w/ you. I went thru 5 med/dose changes B4 finding one I could tolerate. I Was a Zombie! :) According to my family. I have No Recall. Anyway, Took me 10 Yrs. 20 yrs seizure free, now. Except for breakthrus due to missed meds. My daughter has been thru the Same 'Trial & Error' for the past 10 yrs. She Finally has Control. My Little Sister suffered w/ her seizures for over 50 yrs. A Homeopathic MD (Naturalist) determined 'cause', treated & 'cured' her. She has been seizure free for over 2 Yrs. My Mom hasn't had seizure activity for over 20 Yrs. A few Mths? ago, My Sister witnessed her 1st Absence seizure. Cause Determined by a Homeopathic MD: Mercury Poisoning, caused by old fillings. (Article under Resources) She has been fine since having the offending fillings removed & replaced w/ less toxic material.

You can, also, Ask your Pharmacist about Med Assistance Programs. Some Pharmaceutical Companies Will help w/ cost.
Or you can do some 'homework' about the Diets being used. Chek out Phylis Previous Reply/post. Just clik on her Id name for All her past posts. :) Her Site has Lots of Good Info, also. :) Chek it out. :)

Hope this helps. Stick around. We can Teach you a Lot. In the meantime Start a Journal, if you haven't already. More Info as to what to Include Under Tips. As for Memory issues. Well, I gotta Chalk Board, a Dry Erase Board & Post It's, paper, pens, pencils. :) If I think of something, I Write it down. It soon becomes a habit. :) Otherwise I have to depend on friends or family to fill in the 'gaps'. I swear I got holes in my head. Info just goes in one ear & out the other. Gotta read & re-read to make it stick. :) But, it is suggested to eat certain foods/vitamins/supplements to Help That & Exercise the brain Daily. :)

HUGS! Sorry for ramblin. :) Just think you should know I've been there, done that. :( You ain't alone.

Love Candi
marcibarnes replied to dancer86442's response:
thank u candi ! i was on different meds in the begining. they were worse. not using anything worked for years. have most of my issues at night. and i can deal with that. but now i have started having them during the day again.
now my issues seem to be stress, strob lights any bright flashing.. not to mention headaches! this might sound strange to u, but when im gonna have one, my right hand will tingle. then my finger tips go numb...

i have been told that i have a range of seizures. i really feel i need something but i am afraid to start again. cause some of the meds stop my 'warning sign'. and that is worse. i also hate to take meds!!

and about the forgetfullness is the worst! i will be at work going to get something and i will get where i was going and forget..(sometimes this makes me want to cry) but i turn around and go back to where i was and try to remember what i was doing.sometimes this works....i totally agree with u about 'holes in my head'!!
so how do i say jealous! u have so many people around u with epilepsy! so u have a support group all your own. im not sayin i want my family to have them but just one person around me that understands would be the greatest! sometimes i feel stupid trying to explain...
the pain, how i feel when i come out of sure u know what i mean. right?
im always tired. is this normal? i know as a mother of
but ya my kids are the greatest! very supportive.
well i have to get onto my day.thank you for the message.
dont worry bout the 'ramblin' i do that alot! makes me feel better!!!!
thanks for the hugs. i have read and re~read your post. i think i answered most of the questions. ( i think the people i work with think im stupid~cause i write notes just to walk10 steps, but if someone stops me in 5 i will forget what i was
pen and paper always in my pocket!!!!

physical and emotional hugs to u!!!
have a great day...hope to hear from u again!

dancer86442 replied to marcibarnes's response:
Hi Marci,

Sure, Now I have Lots of PPL around me who have Epilepsy. But, back when, it was just me & Sis. We knew about a Cousin's seizures, but, weren't allowed to discuss them. So, we didn't discuss our problems, either. In fact, I Didn't Know my Sis had Seizures, until about a Yr or 2 after mine started up again. I didn't know we both had seizures as an infants/toddlers or that she continued to have them while maturing. I had Support, just no Understanding. I Found understanding here in Epland. I Started Learning about Epilepsy & the effect it had on me & others here in Epland. I Learned to hold my Head Up High, here in Epland. To accept & be accepted. :) That's why I am talking w/ You. :) Cuz, I want you to be able to do the same. :)

OK, you don't wanna go back on the med merrygoround. I can understand. But, there just Mite be a Pill/dose waiting that Would work for you. :) W/out the terrible side effects. :( All treatments are 'trial & error'. But, we do what we gotta do. But, if you Don't wanna go there, Don't. Instead, think seriously & Learn about 'alternative' treatments. ie: Neurofeedback, Diets, Chiropractor, Acupuncture. Even Yoga can help. :) Marci, You need to get your daytime 'episodes' under control ASAP or you mite wind up losing your Driver's License &/or Job. Actually, since it has progressed to daytime: Quit Driving! Common Sense! :)

Tired? Seizure activity does that to you. But, then raising 4 Boys could do that, too. :) Did you Tell them Boys what's happening during the day? Ask them to write down anything 'odd' that they noticeI have found Kids to be more understanding then most Adults. I know my Girl was. My Son. He understands. But, the site of an 'episode' Terrifies him. :(

I'm here everyday. So keep talking. :) Know I care. :) Returning More Hugs. :)

Love Candi

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For more information, visit the Duke Health Epilepsy Center