Saturday, February 27, 2016

Antibody

I will see a Rheumatologist for the first time next week. It took 11 months to get an appointment due to the lack of nearby Specialists contracted with my health insurance. I have reorganized my medical info to make it easier to assess

I may have figured it out by myself at this point – I may have Autonomic Encephalopathy or another Autoimmune CNS disorder. I am hoping the Rheumatologist will have the time and patience to carry out diagnosis and treatment through to its logical conclusion – including a trial of immunotherapy treatment to test my response.

Symptoms organized by Medical Specialization

  1. Dysautonomia symptoms
  2. Epilepsy symptoms
  3. Parkinsonian symptoms
  4. Dementia symptoms
  5. Cardiovascular symptoms
  6. Other
  7. Recent developments
  8. Diagnosed Syndromes

Lifelong Acute and sub-acute attacks lasting weeks at a time. Syndromes present alone or in different combinations. Attacks are triggered by changes in weather – especially wet/damp/cold weather, but also hot weather and stress. Symptom profile changes significantly over time. Different symptoms are predominant for years, then they subside, and have reappeared decades later.

  1. Dysautonomia symptoms
    • orthostatic intolerance
    • heat intolerance
    • exercise intolerance
    • excessive sweating limited to Hands, underarms, chest, feet
    • chills
    • IBS
    • Rashes/blister outbreaks with cold/damp weather
    • joint pain
    • choking on food/liquids
    • coughing
    • red “lace” skin pattern and swelling on abdomen, thighs
    • painful allover itching at night
  2. Seizure Disorder (see “Seizure Diary”)
    • Absence seizures as a child
    • Brief Focal seizures
    • Complex partial seizures with facio-brachial onset (see “Seizure Diary” for description)
  3. Parkinsonian symptoms
    • Numbness, pain, stiffness in feet and hands
    • "Clumsiness" dropping/breaking things
    • Tremors in right hand and leg
    • Rippling muscle disturbances from inner to peripheral nerves
    • Nystagmus
    • Cramping in feet and legs (Right hand curled up, unable to unfurl)
    • Limbs “fall asleep” instantly
    • Locked up muscles (stiff, numb, unable to move legs)
    • Painful repeated contractions in muscles
    • Muscle weakness
    • Head bobbing
    • Legs give out suddenly while walking (“dipping” down suddenly)
    • Loss of balance (lurching sideways, unable to control direction)
    • Loss of sensation in hands/feet (cuts, burns, etc)
    • Mental Confusion
    • Chorea
    • Stamping (right leg/foot)
    • Pins & needles prickling sensation in hands, feet
    • Walking with shuffling gate, feet splayed outward, stooped over (cannot lift feet)
    • Slurred slow flat speech
    • Soft unintelligible speech
    • Dementia symptoms
    • Feeling of disreality (unable to recognize my location; sense that things have changed on me)
    • Auditory hallucinations (muffled, loud, quiet, underwater “gurgling”, tinnitus)
    • Visual hallucinations (appearance of complex animal shapes and surfaces in lucid state while eyes closed)
    • Delusion (rare)
    • Cardiovascular symptoms
    • Orthostatic intolerance
    • LongQT Syndrome
    • Bradytachycardia
    • Chest pain/distress
    • Diffuculty breathing
    • Shortness of breath
    • wheezing/whistling sound when breathing
    • Distress with exertion (extreme in the heat)
    • Dizziness
    • Other Symptoms
    • Sleepiness – falling asleep instantly when well-rested (driving, sitting esp)
    • Frequent yawing when well-rested
    • Vertigo, nausea, vomiting while traveling by car, plane, or bus
    • Difficulty recovering from travel vertigo (hours or days)
    • Weak foot arches and ankles
    • Urinary tract surgeries for pain, difficulty urinating (6 surgeries)
    • Uro-genital pain, pressure, spasticity
    • Hypermobility or double jointedness
    • Joint weakness (frequent sprains/pain in joints)
    • Scoliosis S-curve (age 23)
    • Compressed vertebrae in lower back
    • Sciatic pain; stiffness and spasms in lower back/legs
    • Floaters in eyes (in bright light)
    • Pressure/discomfort in back of eyes
    • Vision: Tunnel vision effect
    • Vision: top outer quadrant dim/missing
    • Poor peripheral vision (upper field)
    • Visual auras: dimness, fuzziness, sparks, geometric shapes
    • Visual abnormalities (shapes “lifting off” from background, patterns separating in space)
    • Night blindness
    • Spatial confusion (difficulty navigating, directional confusion)
    • Periodic Paralysis (right-side)
    • “Coathanger pain” shock sensation reverberates along neck and shoulders when looking up sharply. Temporary paralysis on right side
    • Chronic pain in back of neck (6 years; pronounced during attacks)
    • Recent weight loss (15 lbs) despite high-carb high-calorie diet
    • Feeling hungry right after eating
    • Diagnosed Syndromes
    • Dysautonomia (Tilt Table diagnosis of Orthostatic intolerance)
    • Epilepsy (clinical diagnosis; ongoing EEG testing)
    • Silent Migraines/Confusional migraines (clinical diagnosis)
    • Hypokalemia (age 50)
    • Long QT syndrome (age 50)
    • Hypoglycemia (Fasting blood sugar; age 23)
    • Low triglycerides (age 46)
    • Adrenal Fatigue (age 46)
    • Familial Diagnosis
    • Collagen disease (Uncle)
    • Edematosis (Aunt)
    • Exercise intolerance; Heat intolerance; Infantile Heart Syndrome; Vertigo(Parent)
    • Seizures? (blackouts, incl w convulsions), Migraines (Offspring)

Patient Suggestions re: Diagnostic and Treatment Priority

Autonomic Encephalopathy? Autoimmune Epilepsy? Autoimmune Dementia? Spinal tumor? Blood test for autoimmune antibodies first; spinal tap only if serum negative. Immunotherapy should be prescribed in case of clinical diagnosis only (i.e., in absence of autoimmune antibodies). PET scan and brain chemical test (Seratonin) could both be very useful as a gauge for brain function, and to gauge the success of any treatment course we embark on. Chiropractic visits should be established as a regular, ongoing maintenance to minimize disabling attacks and regain function.

From Mayo Medical Laboratories:
The Diagnosis of Autoimmune Encephalopathies, Dementias, and Epilepsies

Many disorders of the central nervous system (CNS) previously considered neurodegenerative and untreatable are now recognized as having an autoimmune cause. Autoimmune disorders of the CNS may be paraneoplastic (occurring in the setting of an occult systemic cancer) or idiopathic. Improved recognition of these disorders has been facilitated by an expanding profile of neural-specific autoantibodies discovered and validated for clinical use in academic neuroimmunology laboratories. When detected in serum or cerebrospinal fluid (CSF), these immunoglobulin G (IgG) biomarkers reliably predict an autoimmune cause for neurological dysfunction in patients presenting with rapidly progressive brain disorders. New testing profiles relevant to the evaluation of 3 neurological disease states (autoimmune encephalopathy, dementia, and epilepsy) are now available from the Neuroimmunology Laboratory at Mayo Clinic, Rochester, Minnesota. Testing profiles, available for both serum and CSF, include neural antibodies that have been clinically validated as biomarkers of these 3 disorders. Negative results for these antibodies do not exclude an autoimmune basis for encephalopathy, dementia, or epilepsy, so in seronegative cases, a diagnostic trial of immunotherapy should be considered.

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Testing for Markers of an Autoimmune Diagnosis  in Serum and Cerebral Spinal Fluid Neural-Specific Autoantibody Profiles

Detection of 1 or more neural autoantibodies in serum or CSF is consistent with a diagnosis of an autoimmune encephalopathy, epilepsy, or dementia, and helps direct a search for cancer. Screening tests for these autoantibodies include immunofluorescence (Figure 1, tissue-based or cell-based) and immunoprecipitation assays. In some instances, reflex testing may be indicated to confirm antigen specificity (by Western blot) or to quantitate an endpoint value or titer. The testing algorithms for the 3 disease states are similar. Serum and CSF algorithms for autoimmune encephalopathy are demonstrated in Figures 2A, 2B, 3A, 3B, 4A, and 4B. Oncological accompaniments of the individual autoantibodies are detailed in Table 3. Some autoantibodies are more readily detected in serum (eg, voltage-gated potassium channel [VGKC]-complex IgG) and others in CSF (N-methyl D-aspartate [NMDA] receptor antibody). Therefore, the diagnostic yield is maximized by testing both serum and CSF, simultaneously or sequentially.

Wednesday, November 18, 2015

Autoimmune Flare-ups and the weather

The seizures have calmed down now but since the weather shifted I have been sick with autoimmune symptoms: joint pain, chills, upper body aches, fatigue, arrhythmias, nausea, etc. Skin is increasingly: itching, burning, and hurts everywhere inside and out. It started on the abdomen and thighs, with big angry red lace beneath the skin, then appeared on: arms, back, shins, head, scalp, eyes, butt and vagina interior. I got very good relief with medication, and probably could have slowed down the onset of this syndrome with medication. But I am so dismayed at the speed and extent of the flare-up, because it is already quite bad.

Monday, October 19, 2015

Flowing Water

I was having such a good day yesterday but later got clobbered by an autoimmune flare-up with the onset of damp cool weather: Dizziness, nausea, weakness, headache (sinuses, frontal stuffiness, mild ache), distress in chest, “shut down” sensation, cramping (stomach and calves), difficulty breathing (intermittent sharp intakes of air with whistle/groans). The dizziness was severe enough I had to lay down all evening. I woke up with the same symptoms – plus chills, mild tremors, and coughing. The coughing is deep and physical, and seems to be caused by spasms – not a coldey kind of cough. Feels like it comes from the stomach. Some swallowing difficulty today as well. I had to give up my errands for now.

I felt so discouraged last night because I had a big improvement recently in my neurologic symptoms. Am I fooling myself in thinking I can paint again? I don't think so. I can always stop when I need to. It's just the water keeps flowing even when you stop.

Sunday, October 18, 2015

Seizure Jokes

Why did the epileptic cross the road?
Because she couldn't stop at the curb.

How do you know when an epileptic is having an orgasm?
You don't.

How many epileptics does it take to replace a fluorescent lightbulb?
All of them.

MRI Results

I was able to finally get my MRI done by going to my old Dr. in the Neurology Department and asking for it. The results of both the MRI and CATscan done in December show some irregularities as follows:

MRI: “Scattered foci of T2 prolongation are noted in subcortical white matter, probably in left frontal lobe. . . . (foci) are nonspecific and likely represent microvascular ischemic changes however migraine, gliosis, and demyelation remain in the differential” My doctor thinks silent migraines are the most likely reason for this result – which is what he thought all along. Hopefully nerve damage can be ruled out. Mini strokes are also apparently associated with ischemic changes but cannot be verified through imaging. I am wondering if mini-strokes are what sent me to the ER 11 times in last 2 years

CATscan (Dec '14) “Small focal calcification in the left cavernous sinus, uncertain if this could be dural calcification or atherosclerotic plaque in the left cavernous carotid artery” My doctor was not sure what the significance of this finding is, but I am pretty sure neither plaque nor calcification is a good thing in brains

My doctor is sending me to a neurologist to help make sense of the test results, and to decide further diagnostics and treatment. I hope she will order a sleep EEG/video EEG as is standard for seizure patients. But I have to wait 4 months for my appointment unless something comes up.

The hospital can't offer any treatment for these debilitating symptoms until they know what is causing them. I have been able to get the seizures (still unverified) under control with help from my Chiropractor and Acupuncturist. The Chiropractor uses laser to to stimulate the production of brain chemicals and the function of GABA neurons, and the laser is also useful apparently in addressing blood clots and other physical artifacts. Based on the rapid neurologic changes during and after treatment, I believe him. That is, I prefer to believe him.

Seizure-type attacks have been reduced by about 90% since first Chiro treatment. I have only had one complex focal seizure since regularly going to the Chiropractor (compared with 5-6 daily plus additional seizures in the night during July/August), and I have only had about 3 focal seizures that lasted more than 5 minutes since that time. I am still however experiencing fleeting focal deficits (momentary confusion, weakness, limb numbness, hand grasping motions, etc). I lost all feeling in my lower face after one complex focal seizure that occurred on about 9/25/15, and had consistent mild aphasia and weakness in both legs during this time. The facial numbness and aphasia subsided spontaneously after about 4 weeks, but intermittent weakness on both sides persists.

I am using CBD oil to treat seizure symptoms, spasms, headaches, chronic nausea, loss of appetite, dizziness, and chronic pain, and I am hopeful the cannabinoids will clear plaque from my brain. A recent study found that CBD flushes out plaque during normal overnight brain activity. I am also using CBD/THC oil to successfully treat Bipolar mania, mixed Bipolar, and rapid cycling (mixed and rapid-change phases triggers suicidal behavior). Hopefully once I start to make progress with my diagnosis and treatment my stress level will be reduced. Stress level has been extremely high for the last six years due to the myriad effects of disability and due to great difficulty receiving care under the state subsidized healthcare system. At one point the stress level was so high that I regularly experienced PTSD-type symptoms.

At this point it seems as if I have managed to stop the deterioration of my neurologic and autoimmune syndromes – but I could be fooling myself. This illusion could come tumbling down with the next regression. The lifelong pattern has been one of remission/regression, with syndromes becoming steadily worse over time. But I feel better knowing what the problem likely is, and treating it in a pro-active way is definitely an improvement over being in the dark.

Saturday, September 12, 2015

Seizure Diary 7-7-15

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.

    Worrisome lately:
  1. Complex focal seizure-type episode accompanied by migraine (have had partials with migraine before)
  2. 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).
  3. I blacked out for the first time in years (partial blackout progressed from complex partial?)
  4. Movements appeared in left hand, arm, and leg for first time (usually abnormal movements manifest on right)
  5. 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)

    There are perhaps 7 different seizures, syncope, or pseudo-seizure episodes:
  1. 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.
  2. 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).
  3. ICP episode triggered by low ICP in a.m. Or during weather events (sustained low BaroP, sudden or marked change in BaroP) Coffee helps.
  4. 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
  5. “neck seizures” are initiated upon quickly thrusting neck upward or to side. Shock pain in cervix reverberates as do intense abdominal contractions
  6. 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
  7. Non convulsive SE with 2-3 successive uninterrupted complete sequence of seizure events (lasting 4-6 hours total)
  8. Generalized seizures have only occurred after alcohol intake in an earlier life; however recently 2x momentary “blackout” with intermittent consciousness no alcohol.
  9. 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”)
  10. 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)
  11. 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
  12. Loud noise induced partial seizures: racing heart, confusion, dissassociation, irritation, fear, panic. Long recovery time.

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)

Thursday, December 25, 2014

Head pressure? and arrhythmias

Feeling of increased cranial pressure and arrhythmias late in day for two days now lasting several hours at a stretch. Sensation of rapid changes in pressure with change of position. Increased discomfort with prone position. Fluctuating Vision abnormalities, stiffness/pain in neck/upper body, fatigue, confusion, balance difficulty, "whooshing" sound in ears

Tomorrow at GP will skip the Opthomology referral, and focus on Rheumatology and possibly Neurology. Would have liked CATscan WITh contrast and MRI of head in ER (instead of CAT w/o contrast). Also need MRI of ears. Counsellor suggested getting entire genome sequenced, due to similarity between some of my syndromes and those of parents/parents siblings. I will need a powerful ally, no doubt, to procure whole genome sequencing. And an even bigger ally to make sense of it.