Hello.

Im just like you. Last yr on the 24th october '03 I had my first grand mal seizure. Had all the tests done and they were all normal. The dr told me that I probably would not have another seizure 1 week later I had another. Like you I was with my sister but I was at home. So went to another neurologist for a second opinion.

The second opinion was better he told me that just because my test is all normal doesnt mean that I am not epileptic now. I know it sounds bad to be pleased, but I was pleased to be told that I have epilepsy because I was so scared not knowing why I was having seizures.

I was told that I had all the signs of temporal lobe epilepsy. Everyone is different to how epilepsy affects them. I live in australia I am female and I am 22 now. I have continued to had aggressive seizures throught the last 12 months. The longest that I have ever gone without a seizure has been 9 days.


I am changing my medication finally. Please!!! Dont be stuborn like me an just take the awful side effects that come with some meds. Tell the dr right away.


If the dr wont change your meds then find another gp or neurologist.


I like you was really scared to leave the house for a long time. I felt like a burden on my family, and they never understood what I was going through. I guess they tried to keep me like a prisoner.

What you can do so your family understands is call the epilepsy association in your area and get them to send you out information on it. Then your family and you can read all about it.


I know exactly how you feel when you fall asleep you are scared. I am exactly the same. You could get a night light. I some times have the light on in my room all night. Or I put the tv on timer. So I am never in the dark.






take care x x

It is so hard to deal with a new diagnosis and it is frightening. Your neuro was right that sometimes a person can have a one time seizure and never have another. Normal tests do not rule out epilepsy, though....

I am so sorry that you had another. You can have a life. You need to get treatment, find a good neuro who listens to you and find the right med to control them.

We have had congressmen who have epilepsy, einstein and edison are said to have had seizures. Hannibal, van gogh, danny glover, and many others....

Educate yourself about seizures and this will help tremendously! Epilepsy.Com has good basic info on types of seizures, so does epilepsyfoundation.Org....

Hang in there. Talking to others who have dealt with seizures also helps. You are not alone!

I just found out today that my husband was told that he also has seizures.The type he has is grandmal,i"m so worried about him,cause I also had a aunt to die 4 yrs ago from the same thing,what should I do.Please help me to understand and deal with it.


Earlene

Thank-you for all of your encouraging replies, it makes things easier for me knowing that i'm not alone and there is someone else to talk to that knows what i'm going through and feeling. Sometimes when I try and talk to my family I feel dumb because they have no idea what i'm going through.

Carrie here are some really good web sites. So you can print off info and show your parents. Might help them understand and also give you some more insight.


Webmd.Com

Emedical.Com.Au


take care
sami xx

:)

Earlene I hope you are still around. I just saw this post! I understand your worry since you have had an epilepsy death in the family. We have also. I have 2 teens with seizures and it is scary.


The best thing you can do is educate yourself on seizures and sudep, sudden unexplained or unexpected death due to epilepsy. If you go to.Epilepsy and look for those you can get good information. There are steps you can take to keep him safer, staying on the meds exactly as the doctor prescribes, getting enough sleep, never swimming alone, getting a safe pillow (one that is breathable, walmart has some for around $20)

best wishes!! Knowledge is power

My 17 year old daughter had her first seizure 4 months ago. It was the scariest thing either of us has been through. She has had one more since then--2 months ago. We tried one medication and it did not work. She is now on topamax. She has had success with it for 2 months and hardly any side effects (she has lost 12 pounds--she can't lose anymore so she has become more health conscious--a good thing)
you cannot give up your life. Tell your friends what to do if you have a seizure and anyone else you hang with. You can then be more at ease. My daughter went through a very bitter time. All I can say is that god gave her this and now she has to deal with this so her life is happy and progressive. Good luck.