Epilepsy Community

Hello Red,

Welcome to Epland. I am keeping this short cuz of tech problems. I got lots to say. But, lately, almost every time I post a loooong reply I get an Error. Soooo, First, learn seizure 1st aid. Teach anyone who has daily contact w/ you. Educate yourself about ALL aspects of EP. Use "weblinks for Epilepsy" to locate a County hospital. Or locate the nearest Epilepsy Foundation to see if you qualify for assistance. Then record everything that happened & continue recording any "odd" unusual feelings. That includes your Migraines. Include foods/bevs consumed w/in 24 hr period of "episode. Keep track of your mthly's & daily activities. The point is to find triggers &/or patterns. Plus, it will be a valuable tool for you & future DRS. If ya have a video cam, keep it handy. Good News. This is your 1ST "episode." It may be your ONLY episode. We can always HOPE. But, LEARN anyway.

God Bless

Love Candi & family

hi...i had a really bad head injury once from a car accident i was in as a teen...im sure it wasnt as bad as your case...but about 4 years later i ended up having seizures...i had a few blackouts and seizures a day...i want you to know that i know exactly how you feel...my husband said he had never been so scared then when i was having them...but everything seems to be fine now...ive been seizure free for about 5 years and i have a beautiful 2 year old daughter and a son on the way...i hope you dont let this get you down...you need to keep goin forward....you can still do everything you want to do!!...just be sure to ALWAYS take your meds!!!

Hi Red, It would be worth the money to see a Neurologist. Don't assume anything, a seizure disorder is best confirmed with an EEG. Your lapses in memory suggest that there is more going on but ask someone who really knows, can confirm and can offer you treatment so you can get back to your life. I chose my screen name because people often avoid the obvious and I thought it was a funny way of showing my logical outlook on things. I have Epilepsy but it doesn't have me....

Red_N_Yellow_Roses,

I empathize with you. Probably almost everyone has been through this same scene that you have experienced. My advice is to do what you can to just accept it. It probably wont be your last siezure, so take the right steps. Such as seeing a neurologist soon. Insurance or not, you CAN find one at some reasonable cost, just keep pressuring. The county medical system will set you up. Myself, Im 44, male, and writing this with NO insurance also. I pressured my doctor, and drub mfg, and now the drub mfg provides my meds 100%. Just dont fight the doctors like I did, and keep pressing for info. I almost guarantee,,,,you'll be just fine.

Roses,

Hi. I am terribly sorry that you had to go through that ordeal. I am in a very similar situation. I joined the army in 2003 and when I arrived at my first duty station in 2004 I started to have seizures out of the blue. The man I was dating at the time started to notice them. They started out at absance seizures. Basically where I would just stare off into space and then start yelling. Then I started to have the grand-mal seizures shortly there after. Being in the army was really difficult cause I was unable to get help with any of it because my entire chain of command kept telling me that I was causing myself to have a seizure. It wasn't until I got out of the military, 3 years later, that I was able to receive the medical attention that I needed from the VA. Thank God for the VA. I have been on 5 different types of seizure meds and every single one failed except for the one that I am on now. But now it is starting to fail as well. I am now being told by my neurologist that I will be undergoing surgery for the epilepsy. I just hope that it helps my problems.

I suggest that if you are able to, do as much research as you can. Also, if you are able to, try to get some type of medical insurance that will allow you to see a neurologist. It is very important to get there now and get some type of treatment plan started. Don't settle for the ER. I have had to do that too many times and it just doesn't help.

I would love to keep in contact with you if you want to. I know we don't know each other, but maybe I could help you figure things out. Seizure disorders are not something that someone should have to go through by themselves. Please give me a call if you would like to at anytime. I am in Arizona. My phone number is 520-227-5097.

Good luck and I look forward to hearing from you, gijane85613

I don't have insurance either. It's a pain, but a lot of Dr.s and even the E.R. have fee waiver forms. You can try that hun.

I know how yor feeling I've had 3 since I was 18 and they don't know why I have them. They just give me pills to take

red n yellow, I'm in the same boat that you find yourself I had my first seizure last Tuesday !! Same as you I had a head ache and I took some Advil on Monday night and I awoke with paramedics on top of me on the way to the Hospital and no idea what was going on, and I was told at the Hospital I had seizure.

They asked me if I banged my head and the anwser was no, the only major head trauma was back in 1988 from a car accident. I'm home now but like you worried that it will happen again.

But as much as I'm scared we need to think positive and keep our faith, I hope in a small way it will help you...

alex83

Dear Red_N_Yellow, Most major hospitals will take a certain number of "free" cases a year; go to one and fill out the forms for one that has a neurology center. Do your own research, also, for only 40% of EKG's will show seizure activity. Just from your description, it doesn't sound as if you had a grand mal seizure, so look up the different types of seizures. When you have found a doctor you like, try the Partnership for Prescription Assistance to see if you qualify for help getting your prescriptions. Seizures DO "mess" with your brain, for that's where the seizure activity is originating from. What you're describing is not unusual and DEFINITELY needs to be checked out and monitored by a physician! Please don't let it go too long!

Start with this page from the Epilepsy Foundation to research types of seizures: www.epilepsyfoundation.org/about/types/types/index.cfm

Then you can try this page (I don't know where you live) to see if you can find a clinical trial being done in your area that you might be interested in joining: (just another option) www.centerwatch.com/ctrc/EpilepsyFoundation/index.html

Or, go to your search engine for the state you live in and type in "Clinical trials for epilepsy for _____" fill in your state, and see if anything pops up.

The nice thing about clinical trials is that they will do your testing for free and may even pay for your gas to and from the trial. They may give medications for free, also. It's definitely worth looking into.

I'll pray that you find some help. Please feel free to contact me.

Hi!! well my name is samantha when i was younger i took many medications for depression and i think that is a major cause of my epilepsy i had never had a seizure until a few years of taking some mood changing pills! my first seizure was when i was 12 i got maybe 2 petimal seizures a week then i started taking meds for that and got them in control my mother was murdered when i was 13 and i threw out all my pills and became my very very mean self but no seizures for almost 2-3 years then i went to a party and did wat i shouldnt have and i drank well my so called friend didnt know wat was up so he just held me luckly i was fine just hurting like i got into a fight and got beat , then i was fine for antother year and i met the love of my life i didnt tell him and one day it was just mw and him my family left we lived with my grandparents and they know what to do , any way i had a seizure and it was pretty bad i fell on my face on the eay down i hit the side of our coffe table and almost bit my tonge off if thats the way you spell it but i freaked him out he called 911 then my brother and my grandparents they took me to the hospital and gave me a pill to make sure i didnt have another one so after that i made an appointment to see a head doc and i got back on pills but they didnt work for a whole year i was having 2 seizures a month some times more and man they hurt i usually always sleep for like 2 days straight i get my days all mixed up cuz i just sleep and sleep and by this time we lived alone very far from any hospital or any help but my doc gave my love some tips like put me on my side so if i throw up while having seizure and to make sure im breathing ( duh ) and when i wake up to ask me like my name and where im at questions like that i take a medication called lamactil and it works way better than my last medication depekote but i see dots my doc says its not a symptom but i see them but it works on top of the dots sun bothers me and i get head aches so i smoke weed not alot just enough to feel the efects and it helps alot i think thats why for years after my mother died i did ok with my moods and my seizures i dont work my love works two jobs and im going to businees school but i did work and i was infront of a computer all day ( worked for the NM quik quater ) and i had a seizure luckly my boss used to be a nurse and they took care of me it took like 45 minutes to get to work my love got their in 15 minutes and befor i got sick i started twitching and like going in and out of my mind like i was writing up a ad and i would black out and then thing i know they are telling me i had a seizure i didnt realize till i got home cuz when i finally come to i dont member much it like blury like a dream and like i said i sleep for days and wake up like hurting so bad my body just hurts for like a week after my seizure and like i said i smoke im not saying to smoke im just telling u how i deal with it cuz they dont just give u medication for after the seizure wat i would like is to meet a doctor that also has epilepsy but havent met one yet and even tho one of my docs has said smoking dont help and just judge me and start with its illegal yes i know but i doubt she has ever had a seizure in her life so i get a new doc and he is really cool soory my reply is long but i wish i would of known bout this site earlier to help know more bout it and ask some one who also is dealing wit what im cuz to this day i havent met any one who has and i feel for you and your man cuz i know wats its like to freak them out i knew bout my condition and i should of told him but i thought maybe i wasnt gonna have any more but like you i to forget thing not only cuz i smoke but that contributes to it in the past i have writen like a calander thing wit the simple thign i need to do befor i leave like put on deodorant and as far as the test EEG is wat i get maybe once a year well i hope u dont have to go thru it again

hi, sorry to hear about your siezure, as the first couple are the most scary. I have lost a lot of my short term memory and the Dr's just say that it is part of epilepsy and the drugs I take to try to control the siezures. If you have BAD headachs you should talk to a Dr about taking Topamax as it will help a lot. Unless your siezures are lasting longers then 10 to 20 minutes then they should not kill you,but there is always a chance. I average two to three siezure per week most of them small but I've have had some pretty large one's as well. The best advise I can give you is don't drive, climb ladders, or put yourself or anyone else in harms way untill you find out if this is just a one time event or an on going thing. Dylantin is one of the main drugs used to control siezures. if you would like to email me my email address is mrricklloyd@yahoo.com

If you were watching the movie in the dark, that could have set you off. For your own safety, always leave a light on close to you so that the TV flickering lights aren't so harsh on your brain (you can see this effect in fillms when you see the lights flickering on people's faces while they watch TV in the dark -- sure fire way to hype your brain up).

Some more don'ts:

--Take a bath/go swimming by yourself

--Drive (a huge pain, but a lawsuit waiting to happen - The hospital is required to report each seizure to the DMV, and they in turn revoke your license)

the amnesia is pretty much expected with syncope and seizures so know that it's very common, but it's REALLY important for you to see a neurologist some how to find out where the seizures are coming from, and to make sure your plate isn't damaged. It's really very dangerous not to take the whole idea seriously. Some Drs offer a program for lower income families, and from there, the Dr. can put you on a less-expensive supressant (if there is a less-expensive med that will work for you).

To cut costs, you don't need to go to the hospital every time you've had a seizure unless you whacked your head pretty good, or if the seizure lasted longer than 2 minutes.

A prayer for your situation, I know it's rough =( elisa

Hi,iv'e had grand mall since i was 13 you will be fine,dont panic,dont let anyone put anything in your mouth just put your head to one side.Try to keep to a rutine,take your tablets at the same time get plenty of sleep and try not to get to stressed as all this can make you have more fits.Please Please avoid drinking chocolate and acahol as these dilute your tablets and you will have more fits. Dont forget your the same person. Have fun and enjoy your life.Just take a little more care. PS-The tablets give you a good sex drive. Thinking of you, Gill.