Thanks critter. They did tests at the hospital after my seizure. No meds. I was alone when it happened and it was in the afternoon. I was at work and I woke up on the floor having no idea how I got there. It was the scariest thing that's ever happened to me. I'm 25 years old. I have an eeg this week, which i'm hoping will show that this looks to have been a one-off. I've gotta say though that prior to all this I had *absolutely no idea* how common this was. Lucky me - 1 in 10!
Thanks again.
Tracy.

Tracy...


Glad you're having all the tests. Hopefully you will get some answers. My sister was not allowed to drive for six months after her first one. That was the hardest part for her, I think. That and just being afraid it would happen again. Unfortunately for her, one week shy of her six months being up, she had 3 more in a 16 hour period. Her's are all nocturnal (in her sleep) so far.


Anyway, all her tests came back normal (which can happen), so they just call hers "idiopathic," which means "unknown origin." I guess about 70 to 75% of seizure patients fall into that category.

After the second seizure they put my sis on dilantin. Also, they had to set the clock back on the driving so she's back to six months off the road again. That varies from state to state in the united states. I have no idea what the laws are in australia. I believe in england it's one year.


Again, hoping for a one-timer for you and will keep you in my prayers.


P.S. I really do know when to use caps and when not to, but for some reason, on this board the caps never work properly; you'll notice that, too.


Critter ((~.~))

That's really all that bothers me - I don't know what's normal, and yeah, i'm petrified it will happen again. I know plenty of people live with seizures, but the prospect scares the hell out of me. I could be counting my chickens too early or whatever, but I hear of people like your sister critter who was probably told she'd likely never have another one and just when she's starting to feel comfortable again, wham! That's what scares me too. I have two wonderful kids and I certainly don't want to injure them, but even just the thought of having a seizure in front of them worries me.
The past few days have been kind of "foggy". I had my seizure friday and spent the weekend not being able to remember everything clearly like normal and feeling really really tired all the time. Is that normal?
:(
thankfully they don't take your licence off you for one seizure over here. From what i've managed to find out it looks like a 12 month suspension though if I have another one. I've been advised not to drive until my eeg. I don't feel like it anyway - the fogginess isn't good on the road. I am feeling a little clearer this morning though [don't worry, i'm still not planning on driving anywhere - luckily I live quite close to shops etc, so i'm ok on foot :) ].
Thanks again for all your kind words.
Tracy.

G'day tracy ;-)

first, to answer your question. Yes, having a foggy memory and feeling really tired is completely normal. I always like to stress that everybody is different but I can tell you what it was like for my sister. After the first seizure (yes, they told her it was most likely a one-timer; they don't want you to stress over it), she was foggy for several days and her memory was horrible. After the second one, 6 months later, she slept for 18 hours straight! In other words, she had one at 3:00am then slept.....Had one a 7:30am then slept.....Then she had a third one at 8:00pm that night. They admitted her into the hospital then (because she had three in one day), and she didn't really come out of it until 9:00am the next morning. That was septemeber 1st and she is still having memory problems.

Again, everyone is different so i'm just speaking about our experience. You have to also consider the fact that she is 63 years old and i'm sure that might play some part in all of it. You just don't "bounce back" at that age, I guess.

I'm keeping my fingers crossed that yours won't happen again. Try not to stress about it too much (yeah, right!), because I understand stress can really be a trigger.

P.S. I agree with you that not driving until your eeg and all tests come back is a good idea. Just not worth the gamble.

Thinking of you,
critter

Hi,

I am a thirty year old mom of two young boys age 11 and 12 and am new to the forum and though i've had seizures since I was roughly 16 I never really took them as serious until about 5 years ago,
1. Because they happened so infrequently and,
2. My dr played them down as well. Saying that if I took my meds i'd be alright and probably grow out of them.
All these years later, the dilantin I was on seems to be helping my body rage war against me, causing a blood disease (antiphospholipid antibodies which is seriously affecting blood consistancy and flow.) I guess it's rare, and they aren't even sure it's the dilantin that caused it but I guess it's been known to in other patients. Because of the blood thinners they've put me on, now i'm on a new seizure med called keppra and I must say so far i'm totally unimpressed. I averaged 1 grand mal sz every year to year and a half. And i've never had an aura until now, the problem now is that i'm having them on the average of one a month. They don't know why I have them, i'm usually postictal(? Spelling) by the time anyone can get to running any tests, and all tests run while I wasn't seizing have come back fine. I do get a bit of an aura now, basically long enuff to say "oh no" then it slams into me full brain seizures. I do major and serious damage to my tongue, I severed it more than half way through about 6 years ago and now every single time I seize I cut it back open. The bad thing is these aren't precision cuts like a surgeon would make but are the jagged rips that your teeth would make, and from what i've been told getting it surgically fixed would be a waste of time and money as I would just split it open again. I'm embarassed to talk, until it's started to heal, and majorly embarassed to kiss my husband at all, maybe just in my head I know, but i'm terrified he can maybe feel it and it might repulse him (he's never said so but I worry.) anyone out there got any ideas at all for a person to protect thier tongue that doesn't have enough warning? Otherwise i'm thinking even though my teeth are healthy permanent removal of my back teeth is the next option. I'm glad to have found you all, I don't know anyone with seizures in my real life and find that I feel alone and confused most of the time.

Im only 15 and I have been having sezuirs since I was 14 and just recently I had one when I was home alone and when I woke up I found blood in my bed my tounge was in pain and when I got up there was blood all over the house leading to my bed and I had cuts on me and a few on my head all because I had a sezuire in the kitchen. My tounge is still in pain and I dont know how long it will last because its the 2nd day and I am already underweight for someone of my age and hight.
Does anyone know of any way to get this fixed cos I dont want my mom to be scared anymore. She was crying at one stage when I was throwing up and spitting constantly and I realy dont want her to suffer.

i know my mom was really upset & worried when she found out. I pretty much keep them out of the 'e' loop nowadays. Educate them. Let her know that it upsets you to see her upset & this isn't good. Good luck p3k

yo i been biting my tongue at night while i sleep on an infrequent basis now for a good year, i'll do it then it wont happen again for a few months. i wake up with sores all on my tongue, and can clearly see bite marks in them. i also wake up with a killer headache on the mornings this happens. it hurts to eat man... to be honest, i do smoke a little weed and do drink a occasion. i'm a 20 year old male (about to be 21) that likes to have a good time... i'm just a little scared that there may be something with me. i never have had a seizure that i know of except for these ones i must be having at night. does anyone have a clue as to what the hell is wrong with me...

Hello,

Ive gone 14 months without a grand mal seizure..until the other night when for the first time ever in my 6 years of having epilepsy I actually felt it coming on.

Its now 5 days later and my tongue is covered in sores and is incredibly painful after i managed to bite chunks out of it yet again.

I have to say this is the worst its ever been and I cant even eat soup at the moment, does anyone have any ideas to at least numb the pain for a while?.

Thanks

Rick

I have been having seizures for about 18 years off and on due to a head injury from falling off a bicycle. I had one just this past Thursday and bit my tongue worse than I ever have before. Nothing I do seems to relieve the pain - it's excruciating! I have tried an antiseptic mouthwash but it hurts so much to spit it out that it's almost not worth it. Any advice would be appreciated!

What should I use to soothe the pain in my tongue? I also am very tired. Is this normal? I can't remember anything my daughter says I did. She says I sat on the floor after my clonic phase and played with her markers like a two year old and knocked everything on the floor. This was two days ago and I am still exhasted. Someone please give me some feedback...

First, a little background: I'm almost 60, male, and have not had a known seizure until about 6 months ago. Since then, I have had 5 - all of them while I was asleep. I live by myself, and the only time someone has been around me was when I was on an airplane, but the paramedics took me off the plane before I could ask anyone who witnessed my seizure about the details of it.

In three of the seizures I have bitten my tongue - the last one more seriously then the first two. This time I actually bit a chunk out of the bottom. The other two times have cut the skin, but nothing "missing". All three bite marks have been on the left side of my mouth. The first two cuts healed in less than one week. The big bite happened 15 days ago and the left side of my tongue is still sore, but no longer in stabbing pain like the first two days after it happened. The bleeding stopped the same day as it happened. I used antiseptics to help cut back on any possible infection. I have taken the time to carefully move my tongue around my mouth in front of a mirror, and have determined that the deep bite marks line up with my bottom teeth on the left side. The top teeth have not caused that much "damage".

I am currently conteplating some sort of mouth guard to wear at night. I have just begun looking into this, so I do not have a lot of info - only that some sources do not recommend it because they are afraid it might cause chocking during a seizure. More research is needed...

I have been to two different doctors, and neither of them can find any cause for the seizures. Both MRIs and EEGs have shown no helpful information. I am currently taking GABAPENTIN (600mg 3 times a day).

I have had two GrandMal Seizures and both times I have demolited my tounge. I was able to get prescribed some anti-batcrial mouthwash made to keep your tounge from getting infected.

Another note...I have a Right Temporal Lobe Cavernous Hemangioma that causes my Seizures, just wondering if anyone out there has ever heard of this situation and or had corrective surgery and could share their experience with me.

...any of you that suffer from tongue biting have my sympathy. I have gone a full year without a grand mal and then it struck again on Friday night and if im honest im devastated. I hoped it had "gone away" so to speak but when it appears again after a long time its very disheartening. The side of my mouth is missing a big chunk and my tongue is throbbing like crazy. I feel very very low at the moment as well and I cant seem to shake the feeling, I know it will get better...but its taking its blo**dy time and i just feel like screaming!

My mom just had a seizure during mothers day and it was not the best thing ever to even imagine. I was the only family member going ballistic that she was having another seizure again. It's very sad to see whats going on and you cant do any thing to prevent it from coming. I'm just very thankful that my moms seizure happened by my families side than on the road because we were getting ready to go home. Before my mom hit the ground she some what look pretty mental and then collapsed out of no where and while all of this was happening I was going crazy and I'm glad I caught her before she fell. Bubbles started forming up and her eyes rolled back and then she clenched her teeth together, I tried to open her mouth with my hand but it was no use and there was a doctor that helped us who lived in the area and told me to get a spoon to open her mouth and it worked, but after she opened her mouth she almost tore half her tongue off but I'm very grateful for her to still be here with us. This all happened for about 5 to 8 min. but now she's on this prescription called PHENYTOIN which she takes one capsule by mouth 3 times a day. I hope and pray that this medicine works because my mom is the only worker in the family and there are many tragics just like this in every day families.
God bless those in need of help because I know he blessed my family in giving me back my mom on mothers day. I LOVE U MOM

my name is Joanna i live in Florida and i just recently started having these seizures.
I've had three in my whole 22 years. and they always happen sleeping.When i wake up my tongue is on fire and i don't remember much from yesterday or the day before. is this normal? i have no insurance and therefore i cant go check it out*

please help and good luck to everyone.

Forgetting stuff after a seizure is normal. In both of the seizures I had, I lost memory of the night before, and was fuzzy and exhausted for the rest of the day. I'm 21 now, and had my first seizure last October, then another in early February. In my case, I recall what I did the night before after a little while, but there is a period of time immediately following the seizure where I do stuff and have no clue what I did. On my second seizure, I fell and cracked my head against the edge of a closet and bent my glasses out of shape, but somehow made it to my bed. I'm currently on 150mg of Lamictal (Lamotrigine).

I bit my tongue both times. I bite my tongue at other times too, but it's never as severe as when I have a seizure. There really isn't very much you can do. Try to avoid eating things that have crumbs, as it can get into the cuts or sores (I get aphthous ulcers whenever I bite my tongue). Hydrogen peroxide helps the healing process, and helps keep the sore clean. Mouth anesthetics like benzocaine or lidocaine can help numb the pain, especially if it's severe, at least long enough for you to get some nourishment. It's hard to heal without nutrients.

has anyone tried sleeping with a mouth guard on? i'm sure you wont choke on it because it'll be set in place around your teeth. It'll protect you from biting your toungue off. Just an idea...

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