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.

Tuesday, December 23, 2014

Afternoon delight/heart party

Tachycardia suddenly kicked in while napping. Minimal relief after mini yoga session. Sometimes rolling on back or rhythmic exercises can help. Short of breath, distress in chest, sharp insistent ache in middle of upper back (slightly to left side). Sudden feeling of extreme heat inside head along with pressure/ache in both ears, sharp ache in right eye, nausea, dizziness, and pain in stomach. Diarrhea 20” after onset. Relief after second time. WTF. It feels like my heart had a party and forgot to invite me. Sinus tachycardia? I got sick on way to the store earlier today in a brand new vehicle from fumes (formaldehyde, industrial adhesives, plastics, etc). Thought I was going to get a full-blown migraine but seemed to recover after 40”. It feels like the lower part of my heart is sucking downward during these events. Potassium, magnesium, apple, water. Hot feeling in head, sharp quick headaches, pain in left leg (back of leg from left hip to back o f knee). No fever.

Frequent Flyers

On Friday they put me in 5B next to a Vet with PTSD and other mental health traumas. He was articulate and intelligent but distressed. He was on the phone with VA hospital when I arrived. He had been arrested the last time he went to the VA hospital, because they had interpreted his words as “threatening” when he went to second floor to speak to admin. He was trying to procure a promise that he would not be arrested if he returned there. He would have to check in the with police first before proceeding to VA admin on the second floor. He has been trying to get admitted on an inpatient basis. Even the police have been helping him by detailing the VA's response to his need for inpatient care. They won't let him in. “You have no idea how dirty they done me” he tells the person on the phone at VA. Apparently he had put out his eye with a pen and stabbed himself in the chest in the past due to unbearable mental distress. He requested a 10-day supply of the meds-that-keep-him-alive (300 mg lithium, 20 mg sequelia) and then went on his way. I wanted to hug him and tell him how brave he was. It's not possible for me to feel sorry for myself; my syndromes are genetic and have always been there in some form or another. I did not give up my useful years to fight an unneccessary war only to enter hell upon returning.

My next roommate: a suicidal, delusional schizophrenic homeless man. He was upset because his leg, which he said was operated on 5 months prior, was infected and had not been properly administered to. He seemed quite lucid to me, though I don't know whether he really had had an operation or if he just thought he'd had an operation. He kept registering surprise at seeing the tech at the foot of his bed, though she didn't move. He wanted her to stop using her laptop (“It's giving me a stomach ache. I can feel it”) He kept asking for food. They gave him cereal and a bagel. They gave him shots to calm him down, then pills after he threatened them and threatened to kill himself if they discharged him without treatment. He wanted to be admitted on an inpatient basis. They weren't having it. Over the course of an hour a series of perhaps 5 very large male nurses/techs were sent into the room. He was given a printed page of “resources” by an admi and finally they were able to escort him out. I started feeling manic because of his increasingly frantic yelling. But I didn't feel afraid of him. I wanted to hug him and wish him good luck. He is so tired of being on the street. He feels he just can't take it anymore.

They had a single med tech facing us in room 5. At the same time she was tasked with keeping an eye on a delusional schizophrenic man who sat upright in his hospital smock on the edge of a gurney in the hallway facing her. He kept up a running diatribe for four hours uninterrupted. He seemed to be resistant to the drugs they administered to calm him down. Only his pitch changed over time.The speed of his delivery was impressive. How does he think of so many things to say? He should be a professor.

Autoimmune Flare up

On Friday I returned to ER for third time in a week. Third bad episode in 3 weeks: slurred slow speech, extreme dizziness, tingling/numbness on right side of head, confusion, chills, sweating, pressure in left ear, bradytachy and rapid changes in body temperature. Unable to walk for about 5 days beyond a few yards. Could not balance even with two feet on the ground. Limbs are weak. Difficulty lifting limbs. I crashed into the counter and fell on my front when they insisted they wanted to see me walk in the ER. They had me do this twice. The first time the resident managed to catch me from the side by grabbing my right arm. Veering to left.

They were not happy to see me back in the ER but were good enough to do head CATscan w/o contrast to rule out strokes. Scan report states: "dural calcification . . . or . . . atherosclerotic plaque in left cavernous carotid artery". I don't know what significance this has. Nurse suggested that I was having a flare-up of my autoimmune disorder. Instructions: bed rest. They sent me home with a cane as I could not balance myself.

Partial return of function Monday/Tuesday. Relying on cane and curb-to-curb transport to get around.

Wednesday, December 17, 2014

Inflammation, fever syndrome, wandering ghosts

On Wednesday mid-morning back to ER via ambulance due to: dizziness, chills, sweating, inflammation/redness allover skin, mental confusion., chest pressure/pain, laboured breathing, shortness of breath, nausea, neck pain, eye pain/wateriness, pressure in eyes, photophobia, and delayed capillary refill in fingers. My temperature and vitals were good and no infection was indicated thank god. They treated me for orthostatic intolerance with 2 huge bags of fluid before releasing me. They said they would run a blood panel but I guess they decided to leave bloodwork until my Rheumatologist visit, which is 2 or 3 months away. On way home: shakey, dizzy, nauseated, uncontrolled movements, stomach cramps, and extreme weakness. It felt as if feather could knock me over; I was weaving side to side and had to brace myself to stand still. Squinting from eye pain though it was cloudy. Two heroin addicts stared at me pointedly at the busstop; they seemed to think I was one of them. Have lost about 15 pounds in the last 3 months.

I got off my anti-inflammatory over a week ago so that the doctors can examine me “as is” (without any medication whatsoever). So I have been running very hot. Feeling of heat spikes inside my head and allover body. Chills, shivering, profuse sweating, and blister outbreak on bottom. The larger blisters bleed inside the skin and look like bruises once they recede, leaving hard layer of deposit. For two weeks we've had pacific storms, wind, chill, and rain ongoing. I have been symptomatic the entire time. Hoping to get relief when dry weather returns.

I am not the only one whose medical condition is exacerbated by the cold and damp. Many homeless crowded the ER today. Several “wanderers”, including a schizophrenic woman who repeatedly wandered into the room I shared today with a cardio patient. Pale with died-black long long hair, she entered our room mumbling incomprehensibly, drank out of my roommate's cup of water, and removed her flip flops. She then “hid” her flipflops in the trashcan inside our room, then walked back out. She came into the room 2 more times to stand before the sink. She was discharged as far as I know without treatment; she appeared back in the ER just 30” later, at which point she was escorted out into the lobby.

There were repeated calls for another gentleman to stay on his gurney and stop wandering the hall, as well as admonitions to patients to stop rifling through trashcans in the hallway. Crazy. I have the distinct impression, given the high percentage of homeless individuals present in the ER every time I've gone in, that it would be cheaper to provide a small efficiency apartment for each of these people than to care for serious medical conditions while they're sleeping in the cold and damp. I can't imagine there could be any improvement regardless of the medical care they are receiving, given the mental and physical stress they are under.

While in ER they asked if I had a primary care physician to coordinate my care. I explained I had to fire my GP due to incompetence and inappropriate behavior, and that I was the only one coordinating my care. My GP never asked for my medical records, although I brought them with me the first 4 visits, and never showed interest in diagnosing my condition. He did, however, prescribe me Fludrocortisone, which, given my history of hypokalemia and Long QT, could kill me. I need to get this removed from my records and ask them to please please stop prescribing medication to a patient with an undiagnosed condition. It is dangerous and irresponsible.

Vision problems

Went to ER Tuesday morning to have my eyes looked at due to: dimness, blurriness, shutter effect on right side, increasing eye pressure, increasing photophobia, and burning prickling sensations in eyes. ER physician said the front of eyes look fine as far as he could see with the tools he had, and no retinal separation is indicated, but I need to go to an Opthamalogist for a proper exam. He gave me a referral to see both an Opthamalogist as well as a Rheumatologist for my autoimmune syndrome. I need to take his printed referral to the “ER Referral Specialist” at my general doctors' office on the 26th, so that the insurance company can process this request. Each specialist request takes about 2 or 3 months before the actual visit. Each referral had to be corrected for mistakes before it was usable. I may try to see the “ER Referral Specialist” on a walk-in basis this week, but I will need to lay down on the waiting room floor as I'm not able to sit up for very long at all by the time I finally get there. I have the distinct impression that my health insurance policy was designed for someone much healthier than I am. I am hoping to stay out of the ER until I can get to the right doctor for the proper tests.

Saturday, December 13, 2014


Floaters suddenly in my field of vision yesterday while getting up from prone position. A “shower” or mild downfall of floaters: tiny dots and long stringy ones. Have not have floaters for over 10 years. Also, since 2 weeks ago intermittent issues: “shutter” effect on outside of right eye (as if black paper keeps creeping into the edge of field of vision).; occluded vision in right eye (fuzzy, dim); intensified feeling of pressure behind eyes; sharp pricking burning sensations (lesions?) in both eyes; and tiny bright white sparks when looking to the side(noticeable in the dark). Likely the burning sensations are caused by the same thing that is causing burning and itching above both eyes, on neck, allover arms and legs, and on back and abdomen. My symptoms are worsening rapidly in the last weeks, particularly with cold/damp weather. Onset of eye problems simultaneous with severe episode (Long QT, paresthesia, spastic movements, chest pain, short of breath)

I called my son's optometrist when the floaters appeared to ask advice. I was told it must be looked at quickly. I have to go to ER to make sure there is no separation of the retina, which must be repaired right away to prevent blindness.

Friday, December 12, 2014

Protein deposits? Head banging.

Are these blisters and skin aberrations Amyloid deposits? Could CAPS (Cryopyrin associated periodic syndrome) or Muckle-Wells syndrome be causing the entire systemic condition (orthostatic intolerance, arrhythmias, peripheral neuropathy, paresthesia, movement disorder, abdominal pain, inflammation, muscle pain, “shock” sensations in muscles and brain, vertigo, hearing difficulty)? I have appointment with the dermatologist to ask them to please biopsy these skin erruptions.

Several red welts appeared spontaneously as I watched in the last 2 weeks. Limbs ached and burned sharply before these welts appeared. Since 2 weeks ago, my skin appears swollen and covered with a network of large red “lace” allover my thighs, arms, and abdomen. Itching, burning, sharp pricking sensations. Such welts have appeared in the past on my abdomen and lower back. These are vertical welts that appear spontaneously under the skin, with no surface abrasion whatsoever. They usually measure about an inch in length. Shins are covered with pattern: pupae, large light brown “stains”, and white dots and lines are etched allover the surface of my skin on lower legs.

We've had two big storms come in in the last two weeks, and the cold damp weather always triggers skin outbreaks, abdominal swelling and pain, diarrhea, headaches, neckaches (cervical). Additionally my arrhythmia has been kicking in at the same time as these attacks are initiated. One day before the last storm broke I was unable to sit up at all, due to the distress triggered in my chest, which presented with paresthesia and spastic movements. I was turning around on the ground, trying to sit up but slumping over each time instead. Short of breath, difficulty speaking, pressure in chest. These cardiovascular events have been lasting about 40” each time they have occurred in the last 4 months (with minor symptoms continual or recurring). Repeated sharp pains in right inner ear on the same afternoon sustained over hours (waned over 3 days).

The shock sensations inside my head and body were so bad yesterday during an attack that I started crying from the pain and distress. Spastic movement sensations were emanating from my abdomen out to periphery. I have the urge to bang my head against the wall repeatedly whenever these “brain shocks” occur. I fantasize about the instant relief that would surely be delivered if I could just give it a good sharp blow. It is an aggravating sensation. I want to dash it out.