too many kinds of seizures

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i am experiencing what they call seizures. they dont know what kind they are but they give me medicine trying controlling them. its not working. it is been going worst for the past 3 years. doctors trying to figure it out but think i am pretending. i am on tegredol and clobazam but i still have major seizures.

i have a list of symtoms as long as my arm. just want some advice or good place where i can find good help

thank you
 
Hi neo, welcome to CWE!

There seems to be a disturbing trend of neurologists diagnosing people with "pseudoseizures" or psychogenic non-epileptic seizures if there isn't confirming EEG evidence. I'm sorry you're struggling with this right now -- it's hard enough to have seizures without also having to battle the medical establishment. What happens during your seizures? Are they tonic-clonics (loss of consciousness with convulsions). Or are you partly conscious and aware when they occur (Simple and/or Complex Partials)?

Have the docs tried meds other than Tegetrol and Clobazam?

Best,
Nakamova
 
I have all kind of symptoms. smell and taste things that arent there, blurry vision, numbness, staring, i seems to have tonic clonic during night time, strange odd feeling invading myself, confusion,.... many more, but they are worst a week before and after my period.
 
I have a friend who has seizures associated with her cycle. She has severe tonic-clonic seizures. She has dislocated her shoulder, broken a toe, blackened her eye and numerous other injuries. They wanted to do surgery to help her, but she has no insurance. I've been trying to get her to join the site but she's reluctant.

I hope your dr's figure it out soon for you, and find a med that will help.
Here's A Big Hug!!!

Wishing you the best.
 
i woke up one morning with a huge pain on my right side, they could figure out why. they took x-ray and saw that i had 2 broken ribs. i had no bruises
 
neo said:
I have all kind of symptoms. smell and taste things that arent there, blurry vision, numbness, staring, ,.... many more, but they are worst a week before and after my period.
Click to expand...

This is how mine first started 30 years ago. Things would just not feel right and I would stare off in the distance and not understand if spoken to. It would go on for a few minutes and then I would not remember. I had gone to a dr. and he diagnosed me as having hypoglycemia and didn't do any tests. About 6 weeks later, I had my 1st TC seizure on my way out of the shower, fell while seizing, hitting the hot water faucet and lay there under the hot water long enough to suffer 2nd and 3rd degree burns on my back and right side. I was in the hospital for 2 months. It was while I was in the hospital after the accident that they finally did the right tests and diagnosed me with epilepsy. And all these "spells" I had been having happened around my period. I had forgotten about it while in the hospital because of all the confusion, pain, etc. but the nurses had asked me about it because of the obvious.

They put me on meds for seizures and the meds controlled the TC's, but I still had CP's, and they happened around my period. I could usually plan around by marking my calendar. I finally found an epileptologist, a female one, a dr. who specializes in epilepsy, and she made a huge difference in dealing with seizures and hormones.

Here is a great website discussing this:
http://professionals.epilepsy.com/page/catamenial_treatment.html
 
Some of that sounds like the auras my friend gets- auras that can last hours without an actual seizure. He has tonic-clonic and absence seizures as well but the auras are epilepsy too.

Yes, there is a huge trend right now to try to pass it off as psychogenic when, it is in fact e - can't they just go back to it's e with a cause the tests can detect or it's idiopathic e, but still e?
 
they are going to try an EEG for me for 3 day at home. I dont know what is the next step if the machine cant get it. I found an epileptologue, but dont see him until febuary 2013.
 
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