Hello everyone! I am new to this, Ive searched the internet for many weeks now for information on the type of seizures I have which are accompanied by automatisms (which used to terrify me). When I used to have an "aura" (I think thats what they are called) I used to do unexplained things and act like an 8-year-old. Im only 17 and developed my epilepsy a couple of months before my 15th birthday. I dont know anything about it and I havent met anyone with anything similar. It would be great to talk to someone who knows what I have been through. Fortunately for me I have been fit free for 10 months but there isnt a day that goes by when I dont wake up an worry about whether I will have a fit. I have no warning signs and have no recognition of what has happen the only way I know is from people telling me. From what people have told me (people that i love and trust dearl) I didnt very scary things, I would try and jump out of windows and pick red hot coal out of the fire, as well as think i was cartoon characters and think I could fly like pocahontus. Can anyone explain why these happen? There was no reason for my epilepsy starting, I used to have headaches all the time, which turned into fainting. Then eventually i wuld have an aura (that could last up to over 2 hours) and then fall to the floor and shake. I take 200mg of carbamazepine a day which is obvioulsy working. As I turned 17 a few weeks back I would like to learn to drive as soon as i can, does anybody know the regulations? If Anybody can help me I would be entirely grateful. Thanks kayla xx
God bless you to be so young and so smart about trying to find out all you can about your situation. My prayers are with you. I know people are sick of me asking this question, but what is your diet like? What were your headaches like - on one side, above one eye, etc. Did you ever have shooting pains kind of like hitting your funny bone except on one side of your head? How were you diagnosed? How did you get to a neuro? My daughter's are abdominal seizures so went undiagnosed until she had a seizure that generalized to a grand mal. Thanks for any help. Have you had any major illnesses as a child or immunizations before you started getting the headaches? My daughter had her mumps, measles and rubella vaccine before she started having lots of headaches. Then headaches went away and the seizure things started happening. You are so smart to try to learn all you can. My prayers are with you. lazoo
I would say that I have a particularly good diet, Im not the kind of person who worries about weight, even though I have put a bit on lately but I still only weigh about 9 stone so I tend to eat what I like should I be more careful if you can offer me any diet advice I woulld be most grateful! My headaches were mainly on the left side of my head but I didnt have any pains in my funny bone or anything. How old is your daughter? I had alot of trouble at school becasue poeple didnt understand what was happening when I had a fit, so they used to take the 'mickey'. Thanks Mickaela x
Sorry missed out a few of your questions, I never had any major illnesses as a child. As for being diagnosed, I started getting the headaches which were then accompanied by faiting attacks,for which i was sent to hopsital for. This was diagnosed as having migraines, and they tried to find a cause for this but non could be found. One time when I had fainted, one of my friends at school had noticed that I was shaking so when they took me to hospital they were concerned so I had an EEG which was abnormal. I then had a MRI scan but this was normal. I was referred to a neurologist becasue of the bizzare things that were happening to me ie: the auras. She was miffed about this and sent me to see a psychiatrist becasue she thought it was all in my head. The psychiatrist said I was fine. They then did a sleep depreived EEG which was also abnormal so this is my E was diagnosed thanks again mickaela xxx
Look back on my posting entitled Give This A Try sometime earlier. Don't have time to go over it all right now. Main thing is do you eat a lot of sweets or carbohydrates? Please try to see an epileptologist - they specialize in seizures and are much more helpful than a neuro. Are you parents helping you to find out all you can? Take care, lazoo.
First of all whats an epileptologist? Yes I do eat alot of sweets and carbohydrates shouldnt i? My mum is very supportive of me and is there for me whatever I want to do. My mum is a single parent but I still had contact with my dad until last year. He was ok with my epilepsy until he saw me have a fir at his house last boxing day and then he couldnt handle it and hasnt spoken to me sine. It really hurts that he wont have anything to do with me over somewthing that I have no control of. Its not fair but its life, I am doing my best to get on with my life without him in but he was my step dad I had already lost one dadb when I was little. my real dad left my mum when i was 3 and my step dad was part of my life for 12 years and just left it becasue of epilepsy. Anyway I hope your daughter is alright, and doing well. If she ever wants to chat with someone her own age she can email me anytime. Thanks god bless and Take care love mickaela xxxx
hiya I have been diagnosed with psychomotor temperol lobe epilepsy. I do eat meat I dont think i could live without it. Im ok about my dad now I have to get on with my life, it will alwasy hurt but Im a strong person. How is your daughter now? take care love mickaela xxx
DO not worry that you do not know the cause of your epilepsy. A high percentage of those with seizures have no known cause, called idiopathic.
hope you get enough control to drive. You sounds like a very smart 17 year old who has had to deal with alot, but has a great attitude
Son, 11 with Epilepsy
mom of 2 teens who have battled seiuzres.
I don’t know if you question was answered “What is an epileptologist?” but you can get the Webster’s definition at [url="http://w3.uokhsc.edu/neuro/division/cope/tologist.htm"]http://w3.uokhsc.edu/neuro/division/cope/tologist.htm[/url]
I have had Epilepsy since birth and just started going to an Epileptologist a few years ago and it really did make a difference in my life. I was 6’5” and 210 lbs when I fist started going to him and although my height has not changed ;-) I did drop my weight down to 180lb. His theory on that was to get less of me to medicate and have fewer side effects from the drug because it would be getting to where it needed to be and not stored in fat.
It sounds like you are having Partial Complex Seizures but like Lazzo said find your self an Epileptologist.
Speaking of size, I am 6-4" to 6-4.5" and about 180-190 depending on the day and the scale. Some people were thinking that I need more of the Dilantin because of my size. So now I am taking 500 mg a day and feel better, except for some nocturnal episodes. Has anyone found this to be true -- that size, in this case, really does matter?
All of us has an angel, if only we know where to look.
Sometimes it is not just size but how you metabalize things. Seems each person is individual. Important to find the right dose, given at the right time of the right med. Glad the increase worked well for you. An interesting note, we were told that a child may sometimes even take more than an adult, because the metabalize so quickly. As they grow sometimes they need less. You are a big fella, so I am not suprised you needed to go up and find what was right for you.
mom of 2 teens who have battled seiuzres.
I just want to thank all of u immensly, even though at present my epilepsy is controlled it is good to talk to other people who have it and dont think that u are weird becasue u have. I will talk to my mum about finding an epitologist and Im sure she will be very supportive, she always is. I hope that u are all well. If I dont get on before, although i probably will. I hope u all have a great christmas and that all is well. Thank again. All my love Mickaela xxxxxx
hate to be so blunt but when did you start your period I am assuming you are female... I ask this because seizures tend to come out in women at the start of their first period..NOT all but this could help in your research..ask your neuro and see what he/she says.
I started my period at 14 and had my first grand-mal then.
My first seizure occurred when I started menopause! I think hormones really do play a huge role in bringing on seizures. I wish a Neurologist would mosey on to our site and answer some of our questions! Be well. Hugs, Kathy
When Mamma ain't happy ain't noone happy!
Have either of you looked up Catamenial( sp something like this) Epilepsy? It is a form that is hormonal. Seizures getting worse or occurring around menses or at Pregnancy or menopause. Might help you to do a web search....
Yes, it would be great if more neuros would look on sites to help with answers. Hopefully they are busy treating and researching...
[This message has been edited by kayakmom (edited 12-18-2002).]
mom of 2 teens who have battled seiuzres.