Can you contact this women?

[peanuttt]

I do not have anyway of knowing when this particular post was made, but I hope and pray that somehow the women that made it will see this and contact me. (A long shot, to be sure, but I am desperate) It was a very long, about 3 pages, description of a women, in her 30s, having certain unexplained symptoms that appeared to be either epilepsy or schizophrenia. The doctor from the Cleveland Clinic suggested she go to an academic, or learning type institute of medicine, for her problem. The question title was: Epilepsy & Schizophrenia and the forum was: Neurology Forum and the topic was: Epilepsy. I located it for the second time by typing: "For the last 10 years episodic lapses" into the Google search. If anyone wants to take the time to help me find her, this is how you could locate her article.

Her symptoms are almost identical to mine. Reading her article was almost (except for the Dad with schizophrenia) as if I had written it about me. I couldn't believe it!! I have tried so hard to explain these things to doctors, but they seem to be just guessing. My seizures (don't ask me what kind they are because I don't think my neuro, that I have had for the last 5 years, has ever told me, exactly). I have had, as she had, a closed head injury to the left temporal lobe when I was 22, I am now 52 and the seizures started about 6 years ago.

I have my "seizures", aphasia type episodes, anywhere from 3 to 15 times a day. Sometimes they are only minor disruptions, other times they can bring me to my knees. If you find her article she explains this very well, much better then I can. The Lamictal, 425mg. per day and Lexpro 20mg. did nothing to stop them. So, because I felt the drs, WERE so vague, I stopped taking both meds. over a 1 1/2 year period. Then about 4 months later I had my first grand mal seizure, complete with a badly bitten tongue, stopped breathing for so long that my, normally calm husband, performed cpr on me, and I was taken to hospital. I can remember only bits and pieces of that night but I can tell you it was a horrifying experience. Waking up with my 17yr. old son putting pants on me to go to the hospital, EMCs and police standing around my bed, and having absolutely no idea what had happened. The next day I was tired and confused. Saw my doctor, she acted like a nut and told me to go see a psychiatrist. GREAT!! Now I am on 300mg. Dilantin and feel like my life is over.

Please find her article for me, read it and let me know what you think. I guess 2 people can have the exact symptoms of this "whatever it is" and be nuts, but I really would like to know what she did to get answers and what finally happened to her. It is horrific just zoning out like this and no one can really tell you why or make it stop. Because of these episodes, and my memory being so bad, I cannot work and this makes me feel worthless. You have no idea!! The Dilantin does not affect these D**n things either. The seizures come on strong if I try to exercize (can't spell that word to save my life) so the weight is making me depressed.  Help me please, if you can.

Also, I finally know what the aura episodes are, jamais vus. Thanks to her! I keep telling the drs. they are not deja vus, but they don't what to hear that. I do not have visual hallucinations, as she does, but almost word for word on her post is me!! GOD! This is great news for me!! Misery loves company, and all that, you know.

If there are 2 of us, there has got to be others out there like us. Tell us if you will. You can email me directly, if this is allowed. If one of the drs, tells me this is okay, I will post again with my email so you can. Don't be afraid. If this is psychological, or whatever, we need to know,. I NEED to know!! I hate these meds!!

Please, help save a life that was worth saving before this nightmare began!
Peanuttt

[parker776]

Im sorry i dont know who this person is that your looking for but if you would like to read it , i can share my story with you.I led a normal life until about 5 years ago after having my first siezure and having a ct scan finding out i had a meningioma tumor in my left frontal lobe. I had it surgically removed but the siezures have only become worse and continue to get worse day by day.I used to be able to go a few months without having one but now they seem to be happening every couple of days.They have interfered with all of my personal relationships because of the mood changes.My short term memory is shot.I live alone and this can be very scary, you go to bed like normal and wake up on the floor,covered in bruises with blood all over your pajamas from where you have bitten your tongue.Sometimes i get rug burn on the side of my face and the disorientation can last for days.Most of the people that are close to me can tell if I have had a siezure even if they didnt witness it just by the changes in my behavior.It has also effected my work, i cant keep a job because i cant seem to get through the orientation period without having a siezure and it shows in the quality of my documentation.I have also had to go through the embarrassment of having my children find me 1/2 naked on the floor going through a siezure.And the horror of being in a normal environment...just standing there chatting with others, then wake up on the floor surrounded by paramedics and people crying.Please purchase yourself a medalert necklace or bracelet that lists your medical diagnosis, meds you take and any allergies.This is for your safety, because as you know, you never know when one of these may hit.

[dollyn]

I never read the post that you are talking about.

There are so many kinds of seizuers.

Look up Lennox-Gastaut Syndrome.

Hope this helps and that you are feeling better.