Seizure Diary 7-7-15
Short “migraines” and seizures at the same time. “Travelling” pain – starting in front center including eyes/forehead, then progressing downward to neck and upper body. Numbness, convulsions, spasms, difficulty breathing, stiffening limbs, impaired vision, auditory hallucinations (muffled, suddenly loud, etc).
Seizure Diary Sunday 7-12-15
No untriggered seizures today, but two triggered events: arrhythmias and possible seizure after walking 4 miles then hiking up and down canyon (200 yards total elevation change). Event set in as it always does when climbing up the steep top of this canyon. Short of breath, flopping, distressed (35”). Arrhythmic trigger of partial, lots of autonomic activity with physical exertion and any humidity. Second triggered event after completing 7 mile hike after eating lunch (too fast?). Felt woozy after lunch (aura most likely) and while boarding bus. Became very sick once bus started moving. Started blacking out intermittently, as if someone had reached inside my brain to toggle a switch on and off. As with a low frame rate film, I observed darkness alternating with normal vision in my left eye. Not sure what my right eye was doing at the time; it was neutral in that it was not flickering but may have been dim.. This “toggling” black out made me violently sick. I thought that I must be dying, because I did not know it was possible to see what I saw. The graphic, violent nature of this vision loss/concionsness loss ( I really don't know which) was terrifying and sickening. I could not figure out what to do. The guy sitting right in front of me kept turning to look, I didn't look at him but he must be a nice person, as if he wanted to help. I am beyond help. I had great difficulty breathing and kept moving sideways (could not stay conscious or upright without a terrible effort). I somehow managed I don't know how to pull the cord and lurch to front of bus. I thought I would have to ask bus driver to call ER but I stumbled unseeing off the bus, walked about 4 steps, then collapsed on sidewalk. I sat unmoving, horribly nauseated, for 45”. Dizzy, felt like passing out, felt like vomiting, vertigo, confusion, “locked in” or unaware mental state for first half of this event. Recovered slowly in stages, called friend who walked me home very very slowly. I have been unable to board any vehicle since that event due to the terrifying attack. The event subsided after about 40”, but I continued to struggle for another 35” with balance, breathing, distress, weakness on both sides.
The jolting of the bus may have factored here. Why was my left eyesight affected instead of the normally impaired right eye? Wondering if today a partial seizure “generalized” (switched from one hemisphere to both hemispheres) quickly, causing the flickering sensation. Am generally fearful that the partials may become generalized.
Seizure Diary 7-14-15
Repeated/sustained seizures, sometimes with little break. Was able to do yoga spread out in between seizures. Attacks responded to treatment oil, but returned not long after (i.e., delayed for an hour). Seemed to be locked in battle between treatment oil and seizures. Noone won today though.
Seizure Diary 7-15-15
Neck pain with repeated mild seizures at home. Neck pain lasted a long time today and did not respond to oil as usual.
Seizure Diary 7-16-15
Seizure free today until walking to Dr. office with walker. Aura began at 2:15 p.m after 15” walking in moderate heat/pleasant weather: Sweating, imbalance (stepping sideways), disconnection/disreality bodily sensations, “locked in” sensation physically, diminished eyesight, altered hearing (“echoey” or muffled sounding), diminished awareness. I had done yoga earlier in the day, and continued with breathing and meditation exercises while walking with aura. I focused on keeping calm. I did trip and buckle several times today; very weak on both sides. Abdominal aura symptoms joined in 15” after initial disruptions (fullness, painful stitch, pulsating, sucking sensations). By the time I arrived at Dr office I was very confused. I found myself “stuck” (repetitive grasping movements, persistence – trying over and over to solve the same problem without results)for what may have been long periods about 4 times today, usually when trying to enter or leave tight space, such that people approached to help me. It is funny how people look the other way when you are without assistive aids, but somehow feel safe approaching a person with a walker or cane. I guess they figure you can't run after them.
I had intermittent bouts of suddenly slowed/slurred speech while at Dr office. Also had tics/chorea while waiting (grasping, rubbing, straightening, stamping, banging). Distressing sensation of rhythmic shocks aka “waves” inside head and body simultaneously. Moaning and some crying from pain in body and head during event. Very distressed.
Could not feel or move right arm and hand during initial vitals. Nurse had to grab and unfold my right hand to attach 02 meter on index finger, as I could not influence my hand, even as I willed it to move. It seemed a million miles away as I looked at it, inert, curled up against itself. Could not straighten legs as they asked. Legs banged alternately on metal table. Loud. Dog freaking out. Asian Nurse did not like dog in room. I have not been able to work with dog. I had let him off his leash while I waited a long time laying on table, then lost track of him. Out of it. Had intermittent inability to speak 2x today after q's (“locked in” sensation in head and body), but could resume soon after at very low volume. Seizure subsided at 3:15 or so. Lasted about an hour total.
Became angry in conversation about 15” immediately after event, but may have been a reasonable reaction in the circumstances. Not sure now. Will think about it.
Also today: sudden alteration (muffling) and loss of hearing in right ear upon turning head quickly to left.
Seizure Diary 7-17-15
Still recovering from my second seizure today. Started at 3:55 while eating dinner 10” after starting salmon, greens, rice. Per usual, smell of animal protein was off putting and I could not eat more than few bites of protein. Had 4 oz white wine while cooking at 3:00, which seemed to delay errant movements for a little while and alleviate nausea, then backfired, so that the convulsions fired up with a vengeance. Wine does not seem to be a good idea! Aura: deep build up of convulsions in abdomen, gulping air, sudden heat in body, feeling of disassociation from surrounding (as if far away), felt like about to pass out, soreness in neck. After just a few minutes – Faster than usual the aura progressed to repetive grasping, reaching, and later stretching movements in the air with right hand, along with “locked in” feeling, diminished eyesight, and altered consciousness (unaware of surrounding, fearful). [aura just returned momentarily 10 sec? when ate some more of my dinner]
Asked son to videotape my episode but we need to buy bigger sandisk first, as I need 40” or more to hold entire seizure episodes (got only 17” of last filmed seizure episode on last attempt, missing the progression and recovery of convulsions). I sat on floor and convulsed, spasm, jerked, stretched, open/close mouth, tried to rise, sat back down, over and over for about maybe 15” or so. Since we are out of videotape I got my treatment oil and administered I dropperful from 1dram bottle by mouth plus 2 droppers on head (fontanelle region primarily) – INSTANT RELIEF! WOW. Worked good. I relaxed suddenly, as if released from grip of bad beast. I felt calm. Managed to crawl (still could not stand) to BR and laydown peacefully, drifting in and out with just minor twitches and aura-like state changes over the next 35” or so.
Came back into kitchen and had just a little trouble here and there, at one point Stretching right arm upward behind as when balancing while skating. At another point yelling at my son repeatedly in the space of just a couple minutes over successive trivia, then recovering and laughing. I tried to explain to him how to recognize my episodes. If I am yelling at someone, I am having an episode. If I am grasping pointlessly at nothing, same thing.
The first seizure today initiated on way to laundry. During laundry Had minor but sustained tremors, mild confusion, difficulty completing tasks several times (found myself “stuck” in repetitive attempts to solve the same problem). But recovered well and had only minor problems walking home in building heat.
Tonight I Had a quick “aura flash” when getting 5 lb flour off the top shelf. Instant mild reverb shock sensation in neck as I bent neck backward looking straight up, along with instant confusion, heat, and feeling of about to pass out. Same shock/paralyzed/reverberation sensation as when I threw my head to look at my blind spot while passing lanes on the freeway back when I used to drive. But instead of lasting 10-20”minutes as with the driving episodes in the past, today this shock Subsided quickly (total of 2 seconds or so). This event is helpful and I am glad it happened. I have been putting off going to Chiro due to fear of boarding bus and passing out again. The chiro can fix this neck pain and put it away for 10 days or longer. But this pain together with this particular movement It reinforces the notion that the auras and movement disorder may primarily involve cardiovascular system over neurologic, with hypoxia induced by arrthymias/cardio dysregulation causing the movement disorder. Okay, I need to get me to the Cardio asap. But the shock sensations inside my head and body tell me that errant electricity must be a factor at certain times. It may well be that my brain and body are the best indicator of errant electricity. Is it possible that TLE has induced autonomic failure with convulsive syncope? Or is it possible that the errant electricity generated by my arrhythmias are sparking errant cycles in my brain? There is a vasovagal/pressure test they can do on the tilt table to help determine flow problems. Either I am figuring things out, or I am experiencing some kind of brain eureka phase now. . .
I realize now that yesterday, as traumatic as it was, was not actually a bad day. The fact that the new GP wants me to see shrink is actually good, as shrink can help me run noninvasive TLE tests – just as Vincent Van Gogh's intern did over 200 years?:?? ago. I need to locate the methods he used; how can doctors argue with the diagnostic methods used by the medical professional who first recognized and described temporal lobe epilepsy? Also shrink can videotape my convulsions, which are plentiful after walking in the heat, and sure to gear up if I have to venture out midday.
Seizure Diary Saturday 7/18/15
Partial seizure in am while out for long walk. Had to sit 40” to recover.
Aura then Partial Seizure starting at 2:00 pm ish Very distressing for 30”. Made mistake of calling Mom during aura due to important info, but had partial on phone. Took me a long time to try to spell the word “forceps” to my mother; long silent pauses, then I kept repeating “f, f, f” over and over. Words sounded compressed/flattened/labored. but great response to treatment oil applied topically (fontanelle) (had not used oil since early a.m.) Seizure at 10:55 p.m.: Aura started when finished eating dinner (2 oz roast beef, 2 oz roast potato, 2 oz wilted greens). It was too hot too cook during the day. Abdominal pressure, auditory changes, increased HR. After 10” conversation felt dizzy, detached, weak, feeling of faint. Could walk back to room to recline. Metallic taste in mouth very briefly (spread from back to front with warming sensation just like salt); lasted 2 seconds or so, returned with diminished strength on sides of toungue (to the left of tip). Aluminumy. Pain in neck all day. Sensation of “zooming” quickly forward and back while typing now. Makes me feel angry and sad. Mild vertigo and nausea accompany movement sensations. Fear. Lipsmacking. For last 7 days altered mental state about 65% of the time. Feel detached, distant, “off-track” feeling of being knocked sideways into a parallel limited realm, where I am only partially cognizant of environs. Sensation that half of my environment is “out of range” (undetectable or off limits to me). I have not experienced this prolongued almost continual state of dissasociation before. In the past usually momentary. Important discovery today: loud dance music during parade at park. I was dancing while walking, and I had no tremors or movement abberations, even though I was recovering from a partial. Felt smooth. I was in my mind “skating” while dancing forward (rollerblading moves like mohawk, crossovers, switches), and suddenly I missed skating so much I cried, and for a moment I imagined I could skate again, and I realized that I couldn't, but I was glad that I had. I used to spend up to 4 or 5 hours a day in skates, as much as 5 days a week.
11:33 Weeping suddenly. Pain in head; feels like squeezing inside head. Rhythmic. Applied treatment oil on temples. It took several seconds to have any affect (6? 10?). Felt briefly clear. Whereaas applied on fontanelle seems instant and more thc absorption.
11:38 mostly subsided but waves come back briefly. Applied treatment oil on abdomen due to abdominal persistent ache. Subsided quickly with only minor repercussive waves fading quickly.
11:47 intermittent Minor limb movements, gestures in air (left hand wtf usually it's the right). Gaseous churning in abdomen.
11:52 Largely unaware of seizure activity anymore except for abdomen pressure.
- Complex focal seizure-type episode accompanied by migraine (have had partials with migraine before)
- Sustained, repeated episodes without breaks in between, i.e., 2 or 3 successive seizure patterns (complex focal seizure/SE?). Happened late in day two days in row (worst the first day).
- I blacked out for the first time in years (partial blackout progressed from complex partial?)
- Movements appeared in left hand, arm, and leg for first time (usually abnormal movements manifest on right)
- Frequent prolonged altered mental state is recent
Hormonal changes must be part of the problem as I have not had a period in over 3 months. Likely menopause. Will try to treat for hormonal imbalance. I was a forceps baby. Wonder if temporal lobe damage occurred at delivery? Indents on head at birth per my mother; red marks on temples (over temporal lobes) lasted for a couple days she said. As Mom was under general anesthesia, likely we were both too inert to participate much in the process, possibly requiring much wrenching. Imagine playing two person volleyball while both teammembers are under general anesthesia. Likely you would become quickly bored. The doctor who puts his two lively patients to sleep, in order to surgically separate them inert, is like Bill Cosby: he prefers his women and children brain dead, so that he, too, can freely disengage his emotions as he plunges their vicissitudes. She was told I was too big re: forceps use. They were not used on her first child.
Seizure Diary 7/19/15
5:00 a.m. Woke up with racing heart, feeling of dread. Could not relax, felt stiff, ill at ease.
5:20 a.m. Tretment oil topical and oral (1x), but little sense that it is subsiding
5:31 a.m. Abdominal fullness and tremors simultanously (upper arms shaking back and forth). Tremors increasing such that forearms are lifting up. Stiffness in jaw. Breathing becoming heavy, labored.
5:37 shock sensation and concurrent “disreality” or detatched sensation; shut down feeling.
5:40 trembling is diminished. Feel more grounded, but anxious.
This mild but persistent event lasted about 3 hours with waves of varying intensity. It felt more like an aura than a seizure. Was able to walk slowly to store and back. Confused in store, walking repeatedly down same aisles. Europhic sensation and disreality (both of which lately have surfaced as a feature with a life of its own, lasting longer) overriding during this aura.
7:50 a.m. Partial seizure/s initiated. Hand gesturing/pacing in small space. Unable to complete tasks. Wandering. Starting tasks then leaving them.
9:15 Recovered enough to make brunch, but felt distressed/peaked physically and emotionally. Could not clean up after.
11:30 a.m. Huge relief once I hooked up AC in LR. Heaven. Feel better. Humidity/heat big partial trigger. Nonsymptomatic right now except for neck pain.
4:30-5:30 quick successive focal seizures with gestures, interspersed with euphoria.
5:30-6:30 p.m. Partial Seizure with little variation in symptoms. Followed by quick partial recover and cognitive “clearing”, but abdominal symptoms (gas/urgency)
- Movement induced vertiginous complex focal and generalized seizures (in moving automobile, including when I am driving myself. From infancy to present. Occurs in any and all moving environments, including: cars, trains, planes, boats and while swimming in ocean waves.
- The heat episode is triggered by heat/humidity building up in the body, either via environment or exertion. Strong autonomic response (labored breathing, arrhythmias, dizziness, faint feeling, weakness) as well as intermittent “spark” sensations and stuffiness/dullness in head. Feels like: Low BS, Low BP, Low ICP. Have experienced CSF leakage from nostrils after these events, IF rapid change in position occurs (i.e., upon rising upward out of the pool after doing laps in a heated pool in a sustained prone position).
- ICP episode triggered by low ICP in a.m. Or during weather events (sustained low BaroP, sudden or marked change in BaroP) Coffee helps.
- Autonomic cold response episodes are triggered by sudden/marked decrease in temp, esp. with dampness and wind. Blister outbreaks on skin where clothing rubs and where moisture accumulates. General malaise, weakness, confusion, “closed down” feeling, as if only partially aware of surroundings. Significant abdominal disturbances, high ICP events (as if a large man were pushing on the back of eyes and inner ears from the inside), sudden headaches, sustained migraines with physical distress (vomiting, diarrhea, nausea, dizziness, confusion, fear) or perhaps these are migrainelepsy
- “neck seizures” are initiated upon quickly thrusting neck upward or to side. Shock pain in cervix reverberates as do intense abdominal contractions Disassociation, anxiety, fear, confusion simultaneously, along with “closing in” sensation. Spasms in arm (straightening right hand upward or outward). Lasts 8 seconds to 25 minutes depending on severity. Feel depressed/confused afterwards
- Non convulsive SE with 2-3 successive uninterrupted complete sequence of seizure events (lasting 4-6 hours total)
- Generalized seizures have only occurred after alcohol intake in an earlier life; however recently 2x momentary “blackout” with intermittent consciousness no alcohol.
- Momentary Partial seizures initiated by autonomic failure events (i.e., upon standing quickly with concurrent drop in BP). Quick abdominal sensations (lively, not full), dizziness, brief surreal sense (“everything looks different”)
- Anger events that trigger complex focal seizures. It is hard to figure out if the emotion triggers the seizure or vice versa. Shaking, screaming, confusion, rage, verbal outbursts are common (physically violent as child and young adult). Don't know how long it lasts. Feel confused, “shut in”, unaware of surrounding, unaware of self, disassociated, shocked, alienated, and depressed afterwards for hours. Anger/verbal outburst episodes always occurred 1-2 days before onset of menses starting at 19 years (until 40 or so)
- Focal seizures: talking to myself, right hand gesturing rapidly, wringing or shaking out hand, pacing, nodding, unaware of sounds, difficulty understanding familiar words, getting stuck on same word or concept in head, uninterested in surroundings
- Loud noise induced partial seizures: racing heart, confusion, dissassociation, irritation, fear, panic. Long recovery time.
There are perhaps 7 different seizures, syncope, or pseudo-seizure episodes:
The autonomic syndromes seem to constitute the aura phase of complex seizures, as they occur in between focal seizures and include abdominal symptoms, dizziness, arrhythmias, shortness of breath, diarrhea, nausea.
It seems like my autonomic events and my seizures are at odds, in that events from one contaminate the other. It may be arrhythmias sparking an epileptic seizure or vice versa. It could be lack of oxygen triggering a seizure. Cross pollination, cross contamination, things are out of place and out of control.
Seizure Diary 8/4/15
Seizure pattern has slowed down since getting 2x acupuncture treatment. Trying to get healthy enough to travel to chiropractor this week. Seizures triggered on short bus rides (Triggered with Movement/Vertigo) and in stores/offices (flourescent lights after bright sunlight; cold shock with abrupt temperature change)
Today 5:30 p.m.-1:15 a.m.: “Silent migraine” type seizure: sustained low level headache with spikes in intensity with change in position. Abdominal distress for perhaps an hour or two so (though not severe and without diarrhea). Groaning with distress (pain, confusion, difficulty seeing from right eye, “shut down” sensation, cognitive impairment, stiff gate, mild convulsions). Used treatment oil and smoked sativa to subdue intense head pain and other symptoms. Still felt uncomfortable for 7 hours even with treatment. Afterwards: shakey, weak, spacey, immensely relieved (as if released from prison), elated, euphoric, manic. Spent 4 hours cleaning kitchen, etc.
Seizure Diary 8/5/15
Huge relief from chiropractic! At 6:30 pm I have had only 3 focal seizures (so far no complex focal seizures today – it would make today the firt complex focal free day in almost 3 months.. 2 were triggered while travelling in the short bus to and from the doc.
The doc put my neck back in alignment (C4) which took a lot of coaxing as I have not been able to travel to the Chiropractor in 2 ½ months. He also applied a laser to my lateral temporal lobe and then generally around my brain. Huge difference immediately (while he was moving the laser back and forth between brain regions, I had a big shift)