I'm 49 and new 2 all of this

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New Member

Date Joined Jun 2006
Total Posts : 4
   Posted 6/7/2006 1:48 PM (GMT -7)   
 Hi ya'll glad I found this site cause I'm about 2 go nuts. On Feb 6th of 06 I went 2 bed,in my big truck, 4 my 10hr brake 30hrs latter the EMTs were trying 2 get me out. When i started 2 come 2 thay told me I had been haveing seizures of and on 4 3 days. All the docs had asked if id been drinkin or doin drugs, answer 2 thats no. I'v 6 differant hospitals since and every test that i can afford and still cant find out why i'm still haveing them. One doc had me on so much dilantin i went toxic,and sitll have a hard time walking. thank god its been a week and a 1/2 since my 1 .I have varey little support  and just now got online. so anything would de a +.     I'v tried 2 keep tabs on all of them I have but,I'v been told ill have 2&3 in a row. 31 is a bit much And I'M SO FEED UP...  I have high hope for this new stuff Trileptal 600mg still on 200mg of dilantin &50mg of topamax. Sorry 4 my wineing But this way u cant slap me in my face eyes

New Member

Date Joined May 2006
Total Posts : 9
   Posted 6/9/2006 3:42 AM (GMT -7)   
I wish I had answers for you but I certainly have empathy! Please try this board! The name of it sounds sort of restricting in topic coverage but it does sem ot be very active!
I have no idea whether you have "seizure disorder" but someone on there may have som input on your condition!
I'd love to know how you make out, in general

Regular Member

Date Joined Feb 2006
Total Posts : 84
   Posted 6/9/2006 2:30 PM (GMT -7)   
Hi: You need to find yourself an epilpetolgist. And work with that Dr for awile ,until your diagnosis and meds are
stable. Neither I or anyone else can tell you wether you have epilepsy. You will need an eeg, mri to start. The epilpetoligist will be able to evaluate your eeg, and mri .

Wishing you the best of luck.

Positive Person

Regular Member

Date Joined Jun 2006
Total Posts : 41
   Posted 6/9/2006 5:29 PM (GMT -7)   
I dont usually post to this forum, but my heart broke for you, its amazing how all of the sudden, out of the blue, we can start having grandmal seizures, one minuite I'm fussing at my daughter to eat the meal I prepared especially for her, the next I'm wondering why the hell I'm on the floor, with the men in blue shirts asking who the president is, whats my name, ect. I had seizures in my frontal lobe NOS meaning they dont know why I started having them, and I dont have them very often, and I'm not on meds for it anymore. I used Keppra, and it was wonderful, your strong man if you take dilatin, because that was hard on my body. couldnt tolerate it. I still have petite mals, a couple of months ago had one that actually made me feel really out of it for a while, goofy.  I know have both kinds of seizures is uncommon according to some DR, but there you are. Unfortunatly they may never find out whats wrong with you but at least you can get support from the forums, I found doing research online about my type of seizures helped, and going through all the tests I had to go through, taking the meds, was all I could really do. I hope your meds get your seizures under control, and try to stay positive, and get as much supprt from the forums as you can, I remember how hard it was back then and losing my licsense was like getting my legs cut off, took my dependence away, had to ask for a ride everywhere, and you drive for a living, so it must be incredibly hard for you. Its hard to be patient about this I know but like you said the new meds may work, and I hope they do, I'm so sorry your going through this hope you get some kind of recovery soon. Mad

Regular Member

Date Joined Oct 2004
Total Posts : 36
   Posted 6/10/2006 10:01 AM (GMT -7)   

You said that you had seizures while you were sleeping.  I wonder if you are having Nocturnal seizures due to all of the late hrs that you have to drive. confused   You really need to see a neurologist who specializes in epilepsy on an epileptologist.  Nocturnal seizures are seizures that happen in your sleep.  Since I don't know much about you, I can't help more than that.

Epilepsy is caused by an interuption/injury to the brain.  Mine was due to an illness.  It could also be due to an automobile accident.  You really need to have testing done like an EEG, MRI, PET scan, to really be able to see what is causing your seizures.  One seizure doesn't mean that you have epilepsy.  If this is an ongoing thing, you may have epilepsy.

Did the ER tell you what happened during the time that you were found in the semi?  Were you accually convulsing?  Some people have Narcolepsy where they fall asleep in the middle of the day with no reason.  You may want to rule things like that out too.


I'm a normal person.  I just have seizures that can get in the way once in a while.

New Member

Date Joined Jun 2006
Total Posts : 4
   Posted 6/10/2006 4:45 PM (GMT -7)   
i have had MRI and EEG have seen nuerologist but dont have many options where i live. i haqve no insurance and can not work now. no family either. most doctors wont see me cause my money has run out. i have had no head injuries tests show nothing. go 3 to 5 hours daily with siezures when it first started but now go a few days at a time. i cant drive, all alone need someone to talk to.i tried to kill myself cause no doctor would see me for my seizures. i still dont know what to do. my head stays so messed up.my life was turned upside down and no light at the end of the tunnel. i hate for people to see me like this dialtin makes me jerk and act wierd i cant help it. but docotrs wont take me off of it. i had to go to state hospital and they made me worse. i keep praying for a good day

New Member

Date Joined Jun 2006
Total Posts : 4
   Posted 6/10/2006 4:51 PM (GMT -7)   
does anyone have head aches everday? the back of my head feels like it is going to split into. the doctors gave me addavan and darvocet but they dont help does anyone know what i can take that wont make my seizures worse?is it noramal to have headaches this bad?

Regular Member

Date Joined Feb 2006
Total Posts : 84
   Posted 6/10/2006 9:05 PM (GMT -7)   
tazamall, you will have to search for a dr who will help you. wether its out of state or in your state. no its not normal to continue to feel that way. thou the adjustment to meds can be difficult. do you have any family who can help you
out or friends? you can't afford to do nothing.

wishing you the best of health


New Member

Date Joined Jun 2006
Total Posts : 1
   Posted 6/13/2006 10:21 PM (GMT -7)   
Hi, I am so sorry for what you have been through. I understand some of your experiences. When my epilepsy began I would seize off and on for hours. In the ER it would take a lot of IV valium and dilantin to stop me. I went through many doctors, all at my own expense becuase I do not have health insurance. I have spent 3 years unregulated. My body struggles with most of the AED's. Finally I was changed to phenobarbital along with clorazepate (tranxene). My seizures are under much better control but I still am struggling with many issues and seizures. Anyway, the whole point of my story was to say to you, do not give up. I know it's a crazy mess and much more difficult without a support system, much harder. Please, take the advice of the other participant and find another doctor . Keep looking until you find one that will work hard for you. And one you can talk to and who will really listen. Have you checked out clinics in your area for folks on a limited income or with no insurance? ((((I know these are not easy to find, unfortunately.) My girlfriend, in Virginia has found a very good one and the cost for office visits and proceedures is very, very low. You can also talk with your doctor, not the staff, about your financial situation. Some of them are willing to work with you. I know this is a lot of work when you are so worn out. Just take it as you can. Set realistic goals for you to meet. Like, make one call a day to gather information. Also, in some areas, there are agencies/groups that may provide assistance for you that you did not know about. My mother-in-law went blind and there is Dial-A-Ride for the disabled. They offer a free taxi-type service. Try calling your social services department and United Way for guidance. Good hunting, good luck and best wishes.

New Member

Date Joined Sep 2006
Total Posts : 14
   Posted 9/12/2006 8:43 PM (GMT -7)   
tazamall, do you have a local Epilepsy Association or support group?? I don't know your location, but there must be someone you can go & see! I know finances can be a hassle, but see what you can find out in your area! I think you need lots of testing, & a good epilepologist. It always helps if you know what you are dealing with & what your options are!! Some hospitals & universities run trials etc. so maybe you can get into one of those!
Good Luck, & keep your chin up, & don't forget wer'e always here if you want to talk to someone!!! maggie28

Regular Member

Date Joined Mar 2006
Total Posts : 51
   Posted 9/13/2006 5:44 AM (GMT -7)   
Sorry that your going thu this. Not sure why the doctors can't find what is causing it. Like others have said you should see a neurologist who specializes in epilepsy, an epileptologist. I know this from experience, because they really helped me with my Epilepsy. It might take a while before the get you on the right medications, that work for you. Mainly because we all are different. I had to try about all the drugs that there.Don't get discouraged. I hope everything works out for you. Keep in touch with us.

A friend
Had My Brain surgery, and I was so scared, but the doctors made me feel good and and I did. They kidded with me before the surgery and before I knew it I was in recovery Thanks for helping me. Mine is on the  left temporal lobe. They say it is deep it my brain.

Regular Member

Date Joined Aug 2006
Total Posts : 65
   Posted 9/15/2006 12:32 PM (GMT -7)   
I'm glad you found this site. Many of us go through similar stuff, and the rigamarol of testing is one of the hardest parts of having seizures. Often times docs can't find a specific reason for the seizures, but it doesn't negate the fact that you ARE having them. You'll get a lot of advice in here, and we're all willing to listen, but the main thing is realizing that even if you don't have someone close in person who can understand and identify, you are not alone. As I'm writing this, there are 34924 registered members on this forum alone. That's just one Epilepsy site. Some have seizures, others are close friends and family of people with seizures, all sympathize with you and care about what you are going through.
So here's the general advice everyone gets:
Find a doctor you are comfortable with, who will listen and work with you on finding meds that not only help keep the seizures at bay, but don't make you absolutely miserable for the cure. Dilantin is one of the hardest ones to get used to, because of side effects, but with any new med, you have to hang in there and give it a chance. I know; I just started dilantin, and it's my nineth drug of choice in this game of cat and mouse.
Tell your doc about the headaches. They may be from the meds, or they may be part of the original problem. You can't guess as to which it is, b/c every symptom could be important, no matter how small. There are many reasons people have seizures, that's why getting the right tests and working with a good doc is important.
If you're not able to work right now due to the seizures, are you receiving any state assistance? Many times, you can contact your local dept. of social and human services and they can help you receive medical assistance, if not food stamps and cash assistance as well. It may be hard to accept the help, but it's a temporary thing, and if it's available, it's a wonderful thing to take advantage of.
You can contact your local hospital and find out about any free or reduced clinics who might be able to help, or even call the health department. It's a little harder route to go, but it at least gets you started in seeing someone who can help with meds and side effects, and knows the ropes of your state and city to get you in to work with a specialist.
Most importantly, keep talking about it. Don't give up. You're not alone, and all of us are here to support you. No question is too small, no complaint is too large. You can vent and whine and complain to your heart's desire, and all of us have done it at one time or another. It's a hard knock to get in life, and even the strongest sometimes topple. Hang on. We're here.
~Heidi Hope~
"For I know the plans I have for you", says the Lord.  "Plans to prosper you and not to harm you.  Plans to give you Hope & a Future."
Jeremiah 29:11

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