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Non-Epileptic Seizures? Epileptic Seizures? Both?

I started out a two years ago with having tonic clonic like seizures.  I went to a neurologist who tried me on Keppra which worked but I had a bad reaction to it so he took me off of it.  Then he tried Dilantin which I was on for a week, but he took me off of it after having one seizure.  He did a long term video eeg, but I had no seizures.  My eeg was normal so he diagnosed me with psychogenic non-epileptic seizures.  After that, I saw a psychologist who informed me that I was normal and appeared to have no signs of stress or any inducers of non-epileptic seizures.  Then I went to another neurologist who had me do another long term video eeg.  I had a seizure on it which did not show up on the eeg and did not possess any resemblance to epileptic seizures.  I had just been kicked out of school due to the fact that my seizures were "disturbing to the other students".  After that, I went and saw a psychologist who kept changing the reasons for my seizures.  I stopped seeing him after he began trying to sell me his "stress tapes".  I began having seizures which resembled complex partial seizures a short while later.  I went back to seeing a neurologist after I was transported by ambulance to the university hospital after having 8 seizures without returning to consciousness between them.  My potassium levels were through the floor which the er suspected was the trigger for the seizures.  The neurologist ordered a long term eeg which came up normal during which no seizures occurred.  I saw two more psychiatrists who both deemed me psychologically healthy and found no need for me to see them.  I was back at square one....again.  I went on a cruise this past summer to Hawaii on which I had a seizure and was transported by ambulance to the hospital on Maui.  The doctor on the cruise ship said my seizures were displaying all the symptoms of epileptic seizures including a low oxygen saturation level.  He had a letter typed and signed explaining his displeasure in the fact that my seizures were not on medication by the time I left in the ambulance.  About a month later, I had a seizure in church and a pediatric doctor was there.  She also questioned why I had been diagnosed with non-epileptic seizures due to the fact of my seizures' resemblance to epileptic seizures.  She recommended I see an epileptologist.  3 weeks ago, I had a seizure at my friends' house.  I was transported by ambulance to the local hospital.  The residing neurologist put me on Depakote 500mg morning and night.  I was on it for three days and then my epileptologist stopped the medication.  The following day, I had another tonic clonic seizure on the stairs in the barn and landed on the concrete floor.  I was transported by Life Flight to the hospital where my epileptologist worked.  The paramedics reported that my breathing was very shallow and my blood pressure was through the floor.  I had two more seizures following and was given Ativan to stop the seizures.  I had torn a ligament in my neck and received a concussion.  At the hospital, my doctor had me do another long term video eeg.  I had no seizures during this eeg.  The doctor looked at the video of my seizure at the hospital where I had had a seizure on the eeg.  He determined me to have non-epileptic seizures.  Now I am seeing a counselor who is doing neuro therapy.  She found I have depression and worry because of my seizures.  She said that my symptoms were quite strange for my seizures being psychogenic.  She brought up the notion that I may have both epileptic and non-epileptic - the non-epileptic being a result of the stress from my seizures and all that comes with them.  I now deal with loss of much of my short term memory from the seizures.  I had a seizure in the spring on tile, resulting in brain injury causing me to now be legally blind in my right eye.  I am 15, now, and unable to drive, attend school, or most other extracurricular activities.  Neurologists dismiss me saying my seizures are psychogenic, non-epileptic, and the psychologists/psychiatrists dismiss me saying my seizures are not psychogenic non-epileptic.  I am at a loss for what to do.

Before my "complex partial" seizures, I:
Have an aura similar to a rising feeling

During my "complex partial" seizures, I:
Have no memory of the event
my eyes roll up and to the right
I move my mouth (kind of smack my lips)

After my "complex partial" seizures, I:
Feel confused and it usually takes me a few minutes return to normal
Have a headache

Before my tonic clonic seizures, I:
Do not remember within a half an hour to an hour of my seizures
Am pale
Have a hard time speaking and conversing

During My tonic clonic seizures, I have:
Lost Bladder Control
Bit My tongue
Bit my cheek
Broken an arm
Gotten a concussion
received brain damage
had a significant drop in oxygen saturation
torn a ligament in my neck

After my tonic clonic seizures,
I have no muscle control
have choked
am unconscious and unresponsive for a half an hour to an hour
Am tired after waking up (I usually sleep 15 to 18 hours)

I have had my tonic clonic seizures in my sleep, in the morning, in the afternoon, and in the evening.  I have had them outside, inside, with my horse, on stairs, at my old school, and at home.  My complex partial seizures usually last 30 seconds to a minute.  My tonic clonic seizures usually last 2 to 3 minutes, however, the seizure during the eeg lasted 9 minutes.  

Please help me as I am at a loss for what to do.

(the reporting of conversation and such after and during my seizures was information collected by my mother as I was unconscious.)
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Avatar universal
Thank you.  I will do that.
Helpful - 0
279234 tn?1363105249
I'm so sorry for all the troubles that you are going through. It's so disheartening to hear when doctors dismiss patients.

I'm not sure if you have tried this or not..but I thought I would throw this out there.. you could try going to a neuro specialist that deals with seizure. I would also bring a copy of your reports from  the psychologists/psychiatrists that state that this is not a psychogenic problem. It would help to make a timeline of your symptoms...how they acted, when they occurred, what happened before & after the event (give a brief description). Bring your mother as a witness if you can.

I know how hard this can be..but stick with this and you can find the right caring doctor out there...They do exist.

Take Care
Helpful - 0
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