Pseudo Seizures

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hello! just found this forum and i thought i give it a shot since i have visited more than 2 dozens of doctors in my area.

I had 3 tonic clonic seizures 12 years ago and since then i did not have anymore tonic clonic seizures, BUT i started having staring spells 2-3 years after i had those tonic clonic seizures. The point is i am FULLY consicious during these spells and i KNOW what is happening around me. I even used to drive, because i had total control over everything except my eyes. i would stare at something for 7-10 seconds and continue it but at the same time drive. I ofc slowed down and slowly held the brake pedal. the point is i am completely conscious but i cant stop my self from staring. i also have them at night. it makes me wake up, stare at something and then fall back sleep and i can remember that i woke up and had spells.

i have taken tegretol, depakine, neurontine, kepra, and lamictal. around 3 years ago, one of my doctors said that it might have something to do with my psychology. so she added an anti depressant. since then i have changed my pills alot, and tried IXEL, cirpalex, zoloft. i was taking these anti depressants along with my anti epileptic drugs.

My EEGs are all normal, but there are some sharp waves on my right hemisphere, and i have done more than 2 dozen of EEGs and showed them to everyone and everyone says that they are normal.

i have done MRI and Epilepsy Protocol MRI and they came out to be normal.

now im taking lamictal and zoloft and i have 1 episode during the day and 3-4 episodes at night. it used to be more but i found out increasing my anti epileptic drugs and anti depressants lowered the frequency.

I will write all the points here again:

- 3 tonic cloning seizures 12 years ago

- No more tonic cloning seizures

- started having staring episodes 9 years ago

- Fully conscious during the episodes

- I also have them during sleep

- EEGs and MRIs are all normal

- Doctors dont know what is it

Some doctors say it is epilepsy, some say it is pseudo epilepsy and some say its a mix. im really running out of money, since doctors appointments are very expensive here. around 150$ per session. anyways the point is, any one else had this experience?

what has helped you?

can give alittle bit background about myself too:

24 years old lazy student, i always get bad marks, i dont study and i cant concentrate and i always worry about my marks. for my engagement, there was a big problem that really shut me down for about a year.

thanks in advance!

Comments

I had one grand mal seizure

Submitted by just_joe on Thu, 2014-08-28 - 12:08

I had one grand mal seizure (tonic clonic) Staring episodes could be patial seizures When I sleep I sleep. I have never known about a seizure at night. Most people with epilepsy have EEG's that are normal. The EEG's can only read the brain waves down to a certain level. If the abnormal activity is deeper those would not show up. I had 20-30 EEG's all show normal. I fell asleep in one that came up abnormal (seizure activity). The MRI of the 1960's was normal and nothing had been found. Until they saw where the activity came from. The neurologists then went back to that test and bingo they found scared brain tissue. I am one of the few who actially know what is causing their epilepsy. My curent neurologist wanted to do the tests again considering there might have been a procedure that could have gotten me seizure free. He also found the same information. The only difference was the original diagnosis was the scar tissue was before or after birth, Docs stated the scar tissue was done when I was 6-8 years old. If yo uhave a neurologist that you have a good relationship with go to him and discuss this issue with hiim. All it takes is 2 seizures to diagnos eoilepsy. I have been with the same group of neurologists since 1970 when I moved to Dallas. During that time the name of the neurologist has changed since some retired. Others moved to another town or state. My current neurologist was answering some of my questions right after he joined the group back in the late 1980's. What has helped me was finding a doctor that asked me questions and for every questions he asked me I had 1 or 2 to ask him. QUestions like Is this medications the best medication for my type of epilepsy? Does my dosage need to be raised or lowered? Can we add another medicatin that can help control my seizures better? By asking questions I got better results. By having a good relationship with Doc I could call in if I was having problems and I ghot answers to the issue without having to have an appt. I hope this helps and you do get the assistance you need Joe

I had one grand mal seizure (tonic clonic)  Staring episodes could be patial seizures  When I sleep I sleep. I have never known about a seizure at night. Most people with epilepsy have EEG's that are normal. The EEG's can only read the brain waves down to a certain level. If the abnormal activity is deeper those would not show up. I had 20-30 EEG's all show normal. I fell asleep in one that came up abnormal (seizure activity). The MRI of the 1960's was normal and nothing had been found. Until they saw where the activity came from. The neurologists then went back to that test and bingo they found scared brain tissue. I am one of the few who actially know what is causing their epilepsy. My curent neurologist wanted to do the tests again considering there might have been a procedure that could have gotten me seizure free. He also found the same information. The only difference was the original diagnosis was the scar tissue was before or after birth, Docs stated the scar tissue was done when I was 6-8 years old. If yo uhave a neurologist that you have a good relationship with go to him and discuss this issue with hiim. All it takes is 2 seizures to diagnos eoilepsy. I have been with the same group of neurologists since 1970 when I moved to Dallas. During that time the name of the neurologist has changed since some retired. Others moved to another town or state. My current neurologist was answering some of my questions right after he joined the group back in the late 1980's. What has helped me was finding a doctor that asked me questions and for every questions he asked me I had 1 or 2 to ask him. QUestions like Is this medications the best medication for my type of epilepsy? Does my dosage need to be raised or lowered? Can we add another medicatin that can help control my seizures better? By asking questions I got better results. By having a good relationship with Doc I could call in if I was having problems and I ghot answers to the issue without having to have an appt. I hope this helps and you do get the assistance you need Joe

I had one grand mal seizure (tonic clonic) Staring episodes could be patial seizures When I sleep I sleep. I have never known about a seizure at night. Most people with epilepsy have EEG's that are normal. The EEG's can only read the brain waves down to a certain level. If the abnormal activity is deeper those would not show up. I had 20-30 EEG's all show normal. I fell asleep in one that came up abnormal (seizure activity). The MRI of the 1960's was normal and nothing had been found. Until they saw where the activity came from. The neurologists then went back to that test and bingo they found scared brain tissue. I am one of the few who actially know what is causing their epilepsy. My curent neurologist wanted to do the tests again considering there might have been a procedure that could have gotten me seizure free. He also found the same information. The only difference was the original diagnosis was the scar tissue was before or after birth, Docs stated the scar tissue was done when I was 6-8 years old. If yo uhave a neurologist that you have a good relationship with go to him and discuss this issue with hiim. All it takes is 2 seizures to diagnos eoilepsy. I have been with the same group of neurologists since 1970 when I moved to Dallas. During that time the name of the neurologist has changed since some retired. Others moved to another town or state. My current neurologist was answering some of my questions right after he joined the group back in the late 1980's. What has helped me was finding a doctor that asked me questions and for every questions he asked me I had 1 or 2 to ask him. QUestions like Is this medications the best medication for my type of epilepsy? Does my dosage need to be raised or lowered? Can we add another medicatin that can help control my seizures better? By asking questions I got better results. By having a good relationship with Doc I could call in if I was having problems and I ghot answers to the issue without having to have an appt. I hope this helps and you do get the assistance you need Joe

SPEAK TO YOUR NEUROLOGIST

Submitted by Anonymous on Fri, 2014-12-05 - 12:21

SPEAK TO YOUR NEUROLOGIST ABOUT Psychogenic non-epileptic seizures (PNES). bE CAREFUL WITH THE PSYCHIATRIST, SEE A PSYCHOLOGIST HE WILL DISCUSS POSSIBLE REASONS FOR THESE SPELLS, SOMETIMES THEY ARE CAUSED BY TRAUMA. GOOD LUCK AND LET ME KNOW WHAT'S HAPPENING I KNOW WHAT ITS LIKE