A Seizure in Three Phases (Suspected Rolandic Somatosensory Generalized Seizures)
(If there is such a thing.)
I'll try to be as succinct as possible in hopes of a little feedback on what seem to be very uncommon symptoms:
Auras (Simple Partial Seizure) (5-10 Seconds):
-Description: (The person may feel a sense of, altered vision and hearing (which may or may not include hallucinations), and sometimes other symptoms (simple partial seizure.) Sometimes, the person will lose complete awareness and start making odd or pointless repetitive movements towards the end of the aura, at which point the seizure has progressed to become a complex partial seizure.)
-My Experience: Daytime and nighttime left arm tremor/spasm/jerking - occasionally accompanied by tingling and/or numbness. Arm will pull in to chest and pass usually within 15-30 seconds. Occasionally left foot will become numb/tingly with accompanying twitching of big toe and/or the rest of the toes. Intense feelings of discomfort or foreboding/panic. During the night I will wake approximately 5 to 10 seconds into the seizure onset and grasp at or shove my partner to let him know that a seizure is imminent. When the Complex Partial Seizure takes place my consciousness is impaired but never lost.
Progresses into Complex Partial Seizure (5-10 Seconds):
-Description: Always preceded by a seizure aura (simple partial seizure.) The seizure aura might also occur as a visual disturbance. Once consciousness is impaired, the person may display automatisms. There may be a loss of memory leading up to the event. The person may still be able to perform routine tasks such as walking. Complex partial seizures occur when excessive and synchronous electrical brain activity causes impaired awareness and responsiveness. The abnormal electrical activity might spread to the rest of the brain and cause a secondary generalized tonic-clonic seizure.
-My Experience: My body freezes up. I hear myself in a blood-curdling scream but it reality it has been described as a low moan. Visual disturbances occur and become impaired. Painful Sensory Disturbances begin to take place - most often in my feet and progress up my body until it reaches my head - excruciating pain along with the feeling of being unraveled or de-pixelated, sometimes the pain is like I'm in a vise or my limbs and body are literally being torn, twisted, or corkscrewed. The pain is overwhelming.
Progresses into secondary generalized tonic-clonic seizure (grand mal seizure.)
Tonic Phase (Often Overlapping with the Complex Partial Seizure): (5-10 Seconds)
-Description: The person will quickly lose consciousness, and the skeletal muscles will suddenly tense, often causing the extremities to be pulled towards the body or rigidly pushed away from it, which will cause the person to fall if standing. The tonic phase is usually the shortest part of the seizure, usually lasting only a few seconds. The person may also express vocalizations like a loud moan or scream during the tonic stage, due to air forcefully expelled from the lungs.
-My Experience: My body remains stiff/frozen with continued shivering. The terrifying and excruciating painful sensory feelings travels upward from my feet and legs while I am in this position. Once the painful twisting sensation travels up through my legs, waist, torso, chest, and neck and finally reaches my head I lose consciousness.
Clonic Phase (Overlapping the Tonic Phase): (5-10 seconds)
-Description: The person's muscles will start to contract and relax rapidly, causing convulsions. These may range from exaggerated twitches of the limbs to violent shaking or vibrating of the stiffened extremities. The person may roll and stretch as the seizure spreads. The eyes typically roll back or close and the tongue often suffers bruising sustained by strong jaw contractions. Incontinence is seen in some cases.
-My Experience: My eyes will go to the 2 o'clock position (from the perspective of an observer). I remain frozen in this position for approximately 5-10 seconds while still vibrating/shivering. I have never experienced incontinence or loss of bowels. Afterward I am unconscious and my breathing is labored. I salivate and it mixes with the air passing through my lips which creates a spittle foam.
Postictal Phase (2 minutes-10 minutes):
-Description: Due to physical and nervous exhaustion, Postictal sleep invariably follows a tonic–clonic seizure. Confusion and complete amnesia upon regaining consciousness is usually experienced and slowly wears off as the person becomes gradually aware that a seizure occurred.
-My experience: Approximately 5 minutes after losing consciousness I will be awake for 6-8 seconds at a time followed by an equal time of unconsciousness. I am receptive to verbal commands at this time, but in a massive state of confusion or a mental fog, I have a very hard time understanding what is being said to me as I lapse back and forth; I will go limp until my next cycle of being conscious. This lasts for 3-5 minutes after which I remain awake and finally speak with some difficulty. My words are difficult and usually slurred. During this phase where I am able to remain awake I always experience labored breathing, accelerated heart-rate, the sense of terror, confusion, and an inability to calm down due to the entire episode being so traumatic and painful. I must be told several times by my partner to relax, calm down, and that I'm okay. I experience extreme coldness to the point of shivering and needing extra blankets or else needing a warm bath. The remainder of the day is spent cat-napping due to exhaustion.
My seizures started back in 2006 when I was 23... I am now 29. After a year of ignoring them and assuming they were terrible dreams (I used to chew up and bloody the inside of my lower lip) in 2007 I finally had a seizure during broad daylight on my back porch with no one around and it scared me into taking it much more seriously. From 2007 to 2008 my old neurologist even gave up after putting me through the wringer with every test imaginable – which all came back normal - and settled for “convulsions by history” since he could never witness one (3 or 4 of my seizures were witness by two different people) and prescribed me to take 1000mg Keppra 2x Day and 0.5mg of Clonazepam 2-3x Day.
I'm on a new hunt for information because after 3 years and 11 months of being on Keppra and being seizure free I experienced another seizure this morning. I've never been able to find any answers or even similar seizure experiences.
I have an appointment with a new neurologist on the 24th of this month but I am terrified that he will be as unenthusiastic in his diagnosis as my last doctor was, or worse tell me that my seizures are psychogenic or non-epileptic. I remain a pessimist in this aspect because there is no money in the cure.
Is it possible I am experiencing both a tonic and clonic seizure at the same time and that is why I don't have the muscle jerking or twitching that I usually read about for such a seizure? (I remain in my initial frozen position and I don't shake, spasm, flail, or convulse).
I just want a proper diagnosis – scratch that – just a cause of these seizures so I can eliminate the trigger and be seizure free. I just want freedom. I'm tired of being afraid all the time.