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Epilepsy

post #1 of 23
Thread Starter 
ok, im sorry if this isnt the right place to post this, i really dont know where else to, so please bear with me.
when i was lil i used to have "seisures" after many doctors and tests they kinda figured out that i might have had epilepsy. eventually it went away for about 6 years but now the "seisures" are coming back again. If anyone here has epilepsy or a family member that does, please talk to me about it, i have looked online for information about it,(i have most of the symptoms) but i need to talk to people who have experiance with it.
Im not at all trying to make people feel sorry for me, i just need some help, please. Thanks all, God bless.
post #2 of 23
Ilovejoelyo: I don't have epilepsy, but I certainly understand your need to talk to people that do. I'm sure you will find folks here to talk with. In the meantime check out www.epilepsyfoundation.org They have an E-community on their site. Good luck!



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post #3 of 23
my dad has epilepsy, and i experienced one seizure..
We learnt at school a few months later to help an epileptic with a seizure.

My dad was shaking going really red in the face and drooling, he was in his chair and then went unconcious. I thought he was talking to him self, but he wasnt so i got my neighbour to call an ambulance and he went into hospital for a day.
He was then prescribed onto medication, but he isnt on it anymore because he doesnt like it (and since we moved country) he wont tell the doctors he has it
post #4 of 23
I'm so sorry you're having these seizures again.I'm sure you already know how dangerous this could be if left untreated. Please do see your Dr. so you can be prescribed medication to help you.
post #5 of 23
I am sorry to hear that. I know that is terrible. I know a friend of mine when I was in college who has epilepsy.

Stephanie is right, you have to see the doctor, that is a serious problem.
post #6 of 23
This must be very worrying for you. Please, though, go to see a doctor. Epilepsy is a dangerous but reasonably easily controlled condition, and you will feel stronger, healthier and much better if you set your mind at rest and go and see a specialist! Fingers crossed for you!!
post #7 of 23
I may be unpopular in this, but I've known some people that have had epiliepsy, and they have found relief from seizure by smoking marijuana (not for a high) apparently the thing that gives you a high (the THC) also gets your synapses to fire more slowly, and prevents misfiring that way I don't know if this helps, or if it offends, I'm sorry if it doesn't, or if you are offended.
post #8 of 23
I have two family members with epilepsy, and witnessed a great many seizures in my childhood. It takes time to figure out with your doctor what kind of medication and which doses will work for you. It may be an easy process, or could be much more trying. Both my mother and my aunt had epilepsy from infancy, my mom never got hers under control (she has passed away, an accident), and my aunt only has in recent years. My aunt is now doing wonderfully now that she's on meds that are right for her. Make sure you're with a doctor who knows about epilepsy, and I know my mom and aunt both saw a neurologist as well. Make sure you're confident in your physicians abilities, and if you ever doubt ANYTHING, get a second opinion.
post #9 of 23
Heya, talk to ME.

I started having seizures when I was 13 yrs old. They are related to my hormones, I usually have seizures when I'm ovulating.

I have them every few years; it seems they hit me HARD for about a year and then just disappear for about 3 yrs.

I have been seizure free since November of 2000 -- the longest I've ever gone in my history without having seizures!

Mine are called "catamenial" because they are related to my periods. If I have a sudden drop in progesterone, I'll have a seizure. And not just the blank-stare kind, but the convulsive, dead-asleep for 3 days kind (my Neurologist calls them "grand mal" seizures).

I am not on medication for seizures, not anymore. I do take Klonopin for a sleep disorder, my Neurologist prescribed it (due to a head injury) because Klonopin curbs seizure activity in the brain. I used to take Tegretol XR, but I was weaned off of it after one year of no seizure activity.

Anyway I can DEFINITELY empathize with you about Epilepsy. Man, does it WRECK your life. My last seizure was at work (my old job) and I was found at my freaking cubicle unconscious. I woke up 3 days later in my bedroom and my boyfriend told me I didn't move the whole time. Very debilitating. I *almost* lost my license to drive, too.

It's so scary, too, when a seizure hits... the feeling right before. It almost feels like deja vu, like you've been there before -- because it's the memory part of your brain that is affected by the seizure. When I have them, I 'lose time' and don't know what month I'm in, and I forget DAYS worth of info. And, the pain is pretty bad -- you know, the headache & bodyaches from all the muscles jerking -- it's like being put through a meat grinder, brain-first.



Are you a woman or man??? Seizures are different in men & women --- especially the hormonal kind.

I have it looming over my head every single day. I keep my medical bracelet on the shifter boot in my car just in case I start having seizures again or am found unconscious at the wheel. Do you have a medical bracelet? I recommend getting one. I don't wear mine because my seizures are not active right now, but if they start up again I will.
post #10 of 23
I dont know much about epilepsy, but my two cents is see the doctor honey, get meds. I hope you feel better babe, and good luck!!! We are all here if you need anything.
post #11 of 23
Thread Starter 
thanks for all your replies, the problem i have with doctors is we went to so many and wasted so much money and they never told me it was a "for sure" thing. i dont get the cunvulsive like seairures, nor do i pass out, i do hope it doesnt come to that. i have the kind where it feels like a small (non painful) spark really quickly in my head, then kind of like a "woosh" feeling (like when camera circles a person on a movie very quickly) then even though i can see and hear, everyhting seems distant and not quite right. half the time i will get a lasting effect of a consiuose blank stare, its kind of like im trying to gather what has happend and it feels like im dreaming, sometimes that is the scarriest part. when iknow where i am, but i dont feel like im there, and everything is distorted
post #12 of 23
Thread Starter 
Update on this too: I went to the doctor about my seirsues, they scedualed me for another EEG, which was then cancelled and rescedualled for this friday. THat mean on thursday i get to be up allllll night. Oh well, looks like a long night of searching the forums. Oh yea, no caffein past midnight!
post #13 of 23
Quote:
Originally Posted by ilovejoelyo
thanks for all your replies, the problem i have with doctors is we went to so many and wasted so much money and they never told me it was a "for sure" thing. i dont get the cunvulsive like seairures, nor do i pass out, i do hope it doesnt come to that. i have the kind where it feels like a small (non painful) spark really quickly in my head, then kind of like a "woosh" feeling (like when camera circles a person on a movie very quickly) then even though i can see and hear, everyhting seems distant and not quite right. half the time i will get a lasting effect of a consiuose blank stare, its kind of like im trying to gather what has happend and it feels like im dreaming, sometimes that is the scarriest part. when iknow where i am, but i dont feel like im there, and everything is distorted
Please don't take this as an expert opinion, but I wonder if you are having what they call "Petit-Mal' seizures.(don't know if I spelled it right) I don't have epilepsy, but my sister & Uncle do..My sister has the big ones (Grand-Mal), brought on by stress, or even something like flashing/strobe lights.
My Mom told me that my Uncle had seizures that sound alot like yours, where he would just "go off somewhere" for a brief period of time, & that's what they were called. I heard that for a long time he didn't realize what was happening, he was a teacher & his students told him. (Something like that, I'm not sure, Mom told me this years ago)
I hope that you find a good doctor soon, & be careful!
post #14 of 23
keep us updated honey! i hope they can tell you something this time and give you something to help you. Ill be thinking of you!
post #15 of 23
My sister just developed epilepsy, she is going through menopause. Even though the doctor hasn't confirmed it, we think it must be hormone related. She never had seizures before this. She had grand mal seizures, and the most serious after effect of them was that she tore a rotator cuff.

She does not drive. She had her license taken away after the first seizure, and then when the doctor was ready to apply for it to be given back, she had two more. It is very dangerous to drive, you might have an accident when you have an unexpected seizure.

She is taking Dilantin, which has controlled things very very well. She has some side effects, like being tired, so she has more sleep. That probably helps, because lack of sleep seems to be a trigger for hers.

Other than not driving, and worrying, she has no other effects of seizures. Her workplace knows about it, and she only had one week off to get herself stabilized. She has supportive family members who drive her places. And everyone around her knows what to do if she does have another seizure.

I think that's the most important thing, to have people aware of the condition, and familiar with what to do. And having a supportive family and workplace. She is very lucky there, she works in a retirement home, with nursing staff on duty all the time, so they just said, let us know if you are having any problems! And several residents at the home are also taking Dilantin.

But the biggest worry was at the beginning, to find out what was causing them. She had a huge battery of tests to rule out something much more serious.

I did have a co-worker who had severe epilepsy, caused by scarring in an area of his brain. He had a lot more trouble controlling seizures, but still, we all knew what to do when he had one, (they were petit mal), and he was able to keep his job and independent life in spite of his serious illness.
post #16 of 23
My advice is for you to go to your family phsyician and if you do not have one, go to a clinic and get a referral to a neurologist who can properly diagnose your problems to determine whether or not it is epilepsy or not. Seizures can be symptoms of a variety of conditions. There are varying types of epilepdy too and it takes time and patience to figure out the best treatment protocol. You need to work with your neurologist to find what works best for you.

And as for the person who suggested marijuana, if it works for a patient - I see nothing wrong with that. Mind you, it is legal here (Canada) for certain illnesses. I myself have prescribed it for some of my patients who were suffering from chemotheeaphy side effects (It does wonders for nausea and has fewer side effects than the drugs usually given like compozine which is actually a psychiatric medication).

But get to a clinic or your doctor - do not just rely on anecdotal information. You need to find the right diagnosis and treatment plan that works for you!!

Good luck!
post #17 of 23
Thread Starter 
lol i dont think marijuana would be right for me, being 16 and all. people might get the wrong idea. But that you all for your help and encouragement. Any ideas how to spend my thursday night?
post #18 of 23
I was not necly recommending marijuana for you right now - just agreeing with the poster. I am a pediatric oncologist and do prescribe it for 16 year olds but that is legal here.

Have you talked to your parents about your seizures? Do you HAVE a family doctor?
post #19 of 23
I have seizures and have been diagnosed with Epilepsy. I was 30 when it happened. I'm almost 37 now. I've had 4 grand mal seizures since I was diagnosed. I am on both Tegretol and Topomax. It is not something I expected in life let me tell you. They don't know why I have it, as I've never hit my head hard enough to cause any brain damage, or been in any accidents that would cause injury to my head in anyway. the only thing we can think of is I went to the chiropractor one day when I was 30 because of a pain in my neck and he tried to adjust it in a direction it didn't want to go and two days later I had my first seizure. Well I didn't think much of it until a month later I went back for a follow up with the chiro and well two days went by and WHAM again I had another one! Off the record the doctor thinks that it may have been caused by the chiro adjusting my neck wrong but he won't come out and say that on my medical records, he just states that he "isn't sure what is causing the problems with the right side of my brain" ( which is the opposite side which had the pain to begin with in my neck weird huh?) but I'm on meds for the rest of my life and I cope with that, because i look at it like it isn't worse it could be more life threatening, I just have to me more aware when I drive and I hardly ever go anywhere alone, in case I have a seizure, all my friends know to call Brad and how to handle it until he gets there.
post #20 of 23
Thread Starter 
No i dont have a family doctor...but yeah, my parents do know. like i said im going to have my EEG on friday :-P
post #21 of 23
Glad to hear you are going to a doctor then, that's good news - hopefully a diagnosis won't be far behind. Make sure you get a referral to a specialist tho!! And with your parents, find out who the best in your area is for epilepsy.
post #22 of 23
Thread Starter 
And im off! its 5:47am I have been up all night for my sleep deprived EEG. im just about to leave in about 15. Send some seizures my way please!!! God bless all. i'll tell ya all how it went, after i come home and sleep
post #23 of 23
Thread Starter 
Second update of the day. I feel so bad. It went absolutely terrible. I had one Gaint long Anxiaty attack from the minute we left till when we came home. The poor girl running my test must have hated me, because i told her that i wouldn't feel comfterble doing the heavy breathing part of the test. After a while I was fine...well "fine" , but as i was sitting in the chair trying to sleep it felt like i was spinning and floating, and there went the panic attack right through the roof. It was so bad, my muscles became so tence that i could barely move my arms. As we were driving home my dad hit a beautiful black and yellow bird on my side of the windsheild. I almost Puked. Overall... not a good time. And now i wait for the results.
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