Another Seizure, Another Medication

Hello my lovely Otherbeasts! I hope your weekend continues to be an outstanding one!

Well, some bad news to report: back on July 7th I had a seizure. No, it's not the first one I've ever had, but it was the first one I had since I've been on medication since August 2008. I was so mad! I had made it almost 4 years to the date without having one and then BAM, another one struck.

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 guess I should tell you a little bit about my seizures as they're very atypical. Also in the hopes of finding SOMEONE who might experience the same thing. Since my diagnosis of "convulsions by history" in 2008, four years later I have yet to find but ONE person who has seizures similar to mine. I have auras which have yet to be determined to be actual auras or simple partial seizures; but really they're just the same thing:

(From Wikipedia) ((Oh, how I love Wiki.)
Simple Partial Seizures: "Simple partial seizures are seizures which affect only a small region of the brain, often the temporal lobes and/or hippocampi. People who have simple partial seizures retain consciousness. Simple partial seizures are often precursors to larger seizures, where the abnormal electrical activity spreads to a larger area of (or all of) the brain, usually resulting in a complex partial seizure or a tonic-clonic seizure. In this case they are often known as an aura."

My Experience:

Auras (Simple Partial Seizure) (5-10 Seconds: 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. 

I panic. Now usually it just stops there and I go about my merry way, but on those terrifying occasions where, for whatever reason, my seizure threshold is lower, it progresses into a Complex Partial Seizure.

Here comes Wiki again:

Complex Partial Seizure: ^"A complex partial seizure is an epileptic seizure that is associated with bilateral cerebral hemisphere involvement and causes impairment of awareness or responsiveness, i.e. loss of consciousness."

My Experience:

Progresses into Complex Partial Seizure (5-10 Seconds) to a Generalized Tonic Clonic Seizure:

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 and excruciating.

Now, there's nothing I can do at this point to stop it, and it continues to develop into a Tonic-Clonic seizure: Wikipedia says: "Tonic–clonic seizures (formerly known as grand mal seizures or gran mal seizures) are a type of generalized seizure that affects the entire brain. Tonic–clonic seizures are the seizure type most commonly associated with epilepsy and seizures in general, though it is a misconception that they are the only type."

My Experience:

Progresses into secondary generalized tonic-clonic seizure (grand mal seizure.)

Tonic Phase (Often Overlapping with the Complex Partial Seizure): (5-10 Seconds)

-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)

-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.

Now, after all of that is said and done, I experience what's called the postictal state.

Wikipedia: "The postictal state is the altered state of consciousness that a person enters after experiencing a seizure. It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures and is characterized by drowsiness, confusion, nausea, hypertension, headache or migraine and other disorienting symptoms. Additionally, emergence from this period is often accompanied by amnesia or other memory defects. It is during this period that the brain recovers from the trauma of the seizure.
While the postictal period is considered to be the period shortly after a seizure where the brain is still recovering from the seizure, the ictal period is considered to be the seizure itself, and the interictal period to be the period between seizures, when brain activity is more normal."

 My Experience:

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.

So, the conclusion I've come to (although I'm no neurologist or even a nurse) is:

A Seizure in Three Phases (Possible IC3 Seizures: Simple partial seizures evolving to complex partial seizures evolving to generalized seizures in the form of Rolandic Somatosensory Generalized Tonic Clonic Seizures). 

Sounds fancy right? Well, it doesn't feel fancy. Luckily, I've had someone witness two or three of them and so if you're wondering what they look like, here is the personal third person testimony:

“During the night she will wake approximately 5 seconds before the seizure and grasp my arm to let me know that one is imminent. When the seizure takes place she will become stiff, extend her right arm at a 90 degree angle (with the right hand curling slightly inward), her left arm will bend and curl to her chest, and her eyes will go to the 2 o'clock position (from the perspective of an observer). She will remain in this position for approximately 15-20 seconds.

A very minor shivering or shaking sensation will start to travel upward from her legs while she is in this position. Her lips and teeth chatter which cause the inside of her lower lip to become bloody and torn up. Once it travels through her torso and neck and reaches her head she will lose consciousness.

She is conscious for these episodes and describes still being able to hear my voice despite being able to see or respond. Usually tears stream from her eyes.

Afterward she is unconscious and her breathing is labored. She salivates and this mixes with the air passing through her lips to create a foam that runs down the side of her face.

Approximately 5 minutes after losing consciousness she will be awake for 6-8 seconds at a time followed by an equal time of unconsciousness. She is receptive to verbal commands at this time, but as she lapses back and forth she will go limp until her next cycle of being conscious. This lasts for 3-5 minutes after which she remains awake and finally speaks with some difficulty. Her words are difficult and usually slurred.

WOW. So, I am extraordinarily embarrassed that a couple people have seen me in that state ( and it must be scary) but I can't exactly control it. My other thought is that it's either originating or traveling across the somatosensory part of my brain. (Wikipedia!: Somatosensory)

 Here's why I think this:

"Other somatosensory features in epilepsy are body image disturbances, such as feeling of movement or altered posture in a stationary limb, feeling of floating, twisting or even disintegration of a body part." ( http://www.e-epilepsy.org.uk/pages/articles/show_article.cfm?id=88 )
This seems to be in line with what I experience
I think the pain is due to still being conscious in the Tonic (stiffening) phase because of its evolution.

So, if you want to get real nerdy and make your brain sweat (challenge issued) here's the description medical terminology:

Bilateral motor seizures starting in the right rolandic area and spread via the corpus callosum to the left rolandic area; painful seizures have been described, but are uncommon and thought to be more often related to involvement of the somatosensory cortex than simply the conscious awareness of painful involuntary motor movements. Furthermore, pain is often part of the somatosensory aura preceding the motor manifestations. In our patients, the pain occurred during motor movements, but seemed excessive given the intensity of the movements. Therefore, whereas the pain was timed most closely with the limb movements, dysaesthesia related to involvement of the primary sensory (SI) or secondary sensory (SII) cortex is an alternative and perhaps a more likely mechanism.

In summary, we describe painful seizures in which consciousness was preserved throughout bilateral clonic or tonic-clonic motor seizures documented by simultaneous video-EEG monitoring. We think that this seizure type results from the spread of the seizure activity to both hemispheres, yet is limited to sensorimotor pathways in the central brain regions, and sparing the neural structures involved in maintaining consciousness and in processing language and memory.

Somatosensory cortex:
Seizures arising in the somatosensory cortex produce paresthesia on the contralateral side that can spread (in a manner similar to the "march" of motor symptoms) over the body. After the focal seizure there may be diminished sensations in the region.

The patient with rapid onset of transient sensory symptoms can represent a particular diagnostic difficulty. The differential diagnostic possibilities for this presentation include transient ischemic attacks (TIA), migraine transient dysfunction, and simple partial seizures of a somatosensory type. There are some factors that would favor a diagnosis of TIA, such as older age, clinically evident cervical vessel stenotic disease, lack of a "march" (see above), previous history of cerebrovascular disease, changes in the retinal blood vessels (e.g., residual cholesterol emboli) and additional involvement of motor systems. Migraine would be suspected if the sensory symptoms were followed by headache, usually unilateral. However, it must be kept in mind that headache may be a rare manifestation of seizure (usually during the postictal period), and may also be seen with transient ischemic attacks on occasion. It is helpful to note that the sensory symptoms of migraine spread ("march") over the body in a period of minutes, while those of seizure usually march over seconds. On the other hand, symptoms of transient ischemia appear suddenly. Of course, if the focal seizure is followed by a secondarily generalized seizure, the diagnosis of seizure disorder is almost assured since it is very rare that transient ischemia initiates a focal seizure.

Somatosensory Seizures: These are the most common type of seizure in parietal epilepsies. Patients with these types of seizures describe feeling physical sensations of numbness and tingling, heat, pressure, electricity and/or pain. Pain, though a rare symptom in seizures overall, is quite common in parietal seizures, occurring in up to one quarter of patients. Some patients describe a typical “Jacksonian march”, in which the sensation “marches” in a predictable pattern from the face to the hand up the arm and down the leg. Rarely, a patient will describe a sensation in the genitalia, occasionally leading to orgasm. (I wish.)

Somatic Illusions: During a somatic illusion, another common symptom of parietal seizures, patients may experience a feeling like their posture is distorted, that their arms or legs are in a weird position or are in motion when they are not, or that a part of their body is missing or feels like it does not belong.

Vertigo: Patients with parietal seizures may experience a sensation of movement or spinning of the environment, or of their body within the environment.

Visual Illusions and Hallucinations: Patients with visual illusions report a distortion of visual perception: objects seem too close, too far, too large, too small, slanted, moving or otherwise not right. A patient with hallucinations describes seeing objects that seem very real, though in fact they do not exist.

Language Disturbances: Rarely, a patient with a parietal seizure will report difficulty understanding.

So, in conclusion, my lovely little Otherbeasts: if you have your health: CHERISH IT. Also, if this is familiar to you, or know someone who describes similar experiences, please, please, please, please, PLEASE, send them in my direction.

Other than that, my new neurologist increased my Keppra (levetiracetam) to 1500mg 2x Day.
The clonazepam has stayed the same.

Hopefully this blog article will help some people out there, and maybe, just maybe, if I'm lucky, it will help me too. For now, I am alright (beside the fact that it's Texas State Law that I be legally forbidden to drive for 6 months after the seizure for everyone's safety) and I am doing well despite my seizure disorder. Let's hope and pray for another almost 4 years of being seizure free!

Until Next Time,
<3 Shade