My Seizure Descriptions and Triggers

My seizure types:

Reflexology eliminated the epilepsy that I had dealt with since the late 1980’s (read full account in My Story). At the highest activity of the seizures, I was having 4-6 focal seizures per month, (also known as auras), and a tonic-clonic seizure (grand mal) every 4-6 weeks. All activity always started with a focal, and then it either stopped there, or escalated into a full-on grand mal. I was never able to tell if the focal was going to escalate so had to treat each event as if it might become a grand mal and take proper precautions for my safety.

Near the end of 2015 and into 2016, seizure activity began to dramatically increase, spiking up about 30% year over year. My neurologists could not explain the increase and there had been no lifestyle changes to attribute to the change. In 2016 the neurologists ran all the typical brain scan tests again, including a cerebral-angiogram and a 6-day monitored EEG, in an attempt to determine what was causing the uptick and identify seizure origination locations but found no explanation nor were they able to get a seizure to trigger during the tests.

Below is a listing of the seizure types that I experienced as well as a list of the typical triggers for me. Depending on the part of the brain where a seizure starts and what parts of the body that are controlled by that area, the response in the body can express in many different ways. While my neurologists were never able to record any seizures with testing, based on the descriptions of what I experienced when having focals, and descriptions by witnesses (friends/family) seeing me have grand mals, general locations were assumed.

1. Focal sensory auditory seizure - characterized by elementary auditory phenomena including buzzing, ringing, drumming or single tones. More complex auditory hallucinations such as voices are considered a focal cognitive seizure. Focal sensory auditory seizures involve auditory cortex in the lateral superior temporal lobe.

 My expression:

        • Sounds would become greatly amplified – for example, a small tapping sound would sound like huge banging; a ticking clock would sound extremely loud
        • I would hear what sounded like distant voices, but could not understand what they were saying

 

2. Focal sensory gustatory seizure - characterized by taste phenomena including acidic, bitter, salty, sweet, or metallic tastes. These seizures involve the parietal operculum and the insula.

My expression:

        • Bitter, metallic taste in mouth after grand mal seizure

 

3. Focal somatosensory seizure - characterized by sensory phenomena including tingling, numbness, electric-shock like sensation, pain, sense of movement, or desire to move. These seizures involve the sensorimotor cortex.

 My expression:

        • Focal would start with tingling and electric shock feeling going down the left side of my body, starting in my left eye and running down my left face, left torso, left leg, and coming out my 2nd or middle toe.
        • Sense of touch greatly amplified – could feel all my clothing on my body. If my hand was lying on my body, it would feel very heavy and separated from my body – as if it was someone else’s hand lying on me.
        • Extreme fear and a fearful stomach. Logically, I knew there was nothing to fear, however the sense of fear would be present.
        • Sense of déjà vu.

 

4. Tonic-clonic seizures - also called grand mal seizures, can make a person cry out, lose consciousness, fall to the ground, have muscle jerks or spasms.

 My expression:

        • Start with one or all of the focals above, then escalate into full grand mal, lose consciousness, spasms, convulsions, bite tongue on left. If standing or sitting, it would start with me spinning or turning to the left, looking and twisting hard to the left then lose consciousness as grand mal proceeded.

 

Triggers:
        • Lack of sleep
        • Getting too hungry, esp. when combined with lack of sleep
        • Overheated, or heat exhaustion. Too much time in the sun on a hot day.
        • Physical over-exertion (workout too hard; hike too hard, etc)
        • Monthly cycle – seizure activity always went up around my period
        • Alcohol consumption – seizure would happen 12-24 hours post drinking any amount of alcohol.
        • Too much caffeine
        • Too much sugar / carbs (moving to low carb diet helped greatly – Atkins)
        • High stress, particularly fear or the feeling of helplessness, or deeply angry/frustrated
        • Very loud, high pitched sounds – a high speed blender or the use of the garbage disposal in the sink could trigger the start of a focal. Power tools: table saw, sanders, etc. I would wear earplugs when using any of these.