SOMETHING IS WRONG

My face is numb.
My heart is racing.
I feel confused.
Something is wrong,I say.
I fall to the floor.
I must have fainted.
I have never fainted.
Something is wrong, I say.
I see the doctor.
He says, It must be syncope.
Too much stress.
Something is wrong, I say.
I see the doctor.
He says it must be blood sugar problems.
Test is normal.
Something is wrong, I say.
I see the doctor.
He says it must be a heart problem.
I collapse during the stress test.
Something is wrong, I say.
Cardiologist calls Neurologist.
It looked like a seizure, says Cardiologist.
Neurologist does EEG.
Test is normal.
Something is wrong, I say.
Neurologist says too much stress.
I keep collapsing.
I go to the hospital.
Something is wrong, I say.
I’m put on a Psychiatric Unit.
Psychiatrist orders more tests.
Tests are normal.
Something is wrong, I say.
Again EEG is normal.
Psychiatrist orders mobile EEG.
The Nurse takes me to the mall.
I have three seizures in one hour.
Psychiatrist says I have seizures.
Something is wrong, I say.
I’m put on Tegretol.
Life gets better.
Two weeks later
I have an allergic reaction to Tegretol
I’m put on Dialantin.
Something is wrong, I say.
I’m having more seizures than ever.
Neurologist says, If you have your tubes tied,
I can help you.
I don’t want my tubes tied.
I do want my life back.
I have my tubes tied.
I go on Depakote.
Oh, No I’m allergic to Depakote.
Neurologist says, the medicine didn’t help.
It must be in your head.
Something is wrong, I say.
I remember medicine didn’t help.
It must be in my head.
Eighteen months go by.
No improvement, but no drug side effects.
Something is wrong, I say.
I have another EEG.
It is extremely abnormal.
Nothing is wrong, I say.
It is in my head.
You are a candidate for brain surgery,
the Neurologist says.
I say all right, I just want my life back.
Insurance company requests s second opinion.
New Neurologist says, it is in your head.
The surgery is too expensive.
It must be in my head.
It has been three years.
Everything must be in my head.
I go to Psychiatrist.
He orders all my medical records.
I say please prove it is in my head,
so I can drive.
He says, you have seizures,
It is not in your head.
You were hit by a pick-up truck.
I say I know that.
He says but you present so well.
Psychiatrist asks how many Neurologists requested
My neuro-psychological test results ?
I say none.
They all felt like it must not be important.
It is not in your head, he says.
I am sent to new Neurologist.
He says it is not in your head.
He does another EEG,
It is very abnormal.
He puts me on Neurontin.
Life gets better again.
I now have terrible diarrhea.
It must be in my head.
I don’t call Neurologist.
I get dehydrated.
I’m taking 4800 mg. per day.
I go into status elepticus.
Neurologist asked why I didn’t call?
I say I thought it was in my head.
I have to go off of Neurontin.
I now take 300 mg. of Phenobarbitol.
Life is better again.
Life has hope again.
I was right in the beginning
Something was wrong.

This is a true account of my struggle to get help for my partial complex
seizures and drop attacks. I have now had three abnormal EEG’s with seizure
activity in the frontal lobe and both sides of the temporal lobe, and the
central part of my brain. If you know something is wrong, don’t let anyone
convince you otherwise. Believe in yourself, and your own instincts.
Don’t let anyone take away your sense of self.

by: Debbie M. Wilson
3-1-96