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.)