I write about the anaphylactic shock that fried my brain, and disconnected my skills and memories.
This is my first KosAbility diary. Thanks to CathyM and Besame for their patience with my inability to get this done promptly.
Sometimes I can write, sometimes not. I cannot predict in advance what will happen, usually. I tend to promise results based on my previous self, who could write or speak eloquently, on demand. Not so much these days.
My most recent mental problems are a result of brain damage due to anaphylactic shock. I used to have a wonderful, near photographic, memory. Now I have trouble doing all the work that was easy, like writing, largely due to what seems to be concrete thinking. This means that I cannot remember what I want to write unless I have printed copies of the reference papers. At first, I had to line them up and see them but now I just have to print them and do not necessarily need to have them at hand. I use two monitors and wish for a third so that all I needed could be seen. Some days I cannot find the words I need, others days I have less trouble. I discovered that this writing is very exhausting. I knew this from my geology work but I thought it was just dealing with the science but it seems to be all mental work.
Death by lovely blue flower seeds, almost
On Labor Day, 2007, I ate about a teaspoon of whole flax seeds, as an attempt to help my irritable bowel. Within about 15 minutes, large hives erupted across my abdomen. By the time I got the emergency room, another 30+ minutes later, my blood pressure was dropping precipitously as I went into hypovolemic shock.
I could breathe adequately, no wheezing, but I was vomiting and very dizzy. I was given multiple doses of epinephrine, hydrocortisone and cimetidine (Tagamet, an H₂ antihistamine), IV fluids and oxygen. My blood vessels lost integrity and the fluids went into my tissues. My blood pressure dropped to coma levels around 50/30. I did not lose consciousness, but I did feel myself getting far away.
I could hear the doctors calling Poison Control for advice so I figured things were getting serious. I decided all I could do was be really angry to raise my BP. This was not difficult, since I felt really stupid to die from eating “healthy” seeds and my crazy husband was being a jerk. Fortunately, this was effective and my blood pressure began to rise. I spent the night in the hospital and went home the next day. Additionally, my blood potassium was very low, so I was also given potassium in an IV.
No reason for the low potassium was found.
What happened to my brain was ischemic hypoxia, (lack of oxygen due to lack of blood flow), which kills cells in the hippocampus, layers of the neocortex, huge, strangely shaped Purkinje cells, and striatal neurons.
Afterwards, I discovered that flax seed was the same as linseed. If I had known, I never would have tried it. Linseed oil was the standard wood preservative in my childhood in the high desert of New Mexico. They put it on everything, and likely let me paint too. Linseed cake was fed to the animals also.
I am severely allergic to everything from my childhood. If not from my own exposure, then from the countless allergy scratch tests. The doctor insisted I give myself two allergy shots every week, starting at age 8. Crazy doctor abuse, a PTSD factor.
My brain was not the same brain I counted on forever. I could not remember much of the past few years. At first, I did not worry about that so much since my former husband’s mental health had been deteriorating and life had been incredibly stressful for several years. But when my kids wanted me to help them with their homework and I could not remember how to do math or chemistry problems I remembered, I began to worry. My kids were stunned because they could see the change. A few months later I could not think of the word for the rocking chair and ended up calling it a sewing machine (maybe the up and down?). I was terrified.
I could not think very well or write adequately for the rest of 2007. I worked out of town for most of 2008, and filed for divorce. I found I could still do fieldwork, that part of my brain does not seem to have problems. I could get around in the field, recognize rocks and understand geology but writing was difficult. Having to assemble 25 years of papers to get divorced was hideous and took years. My ability to think, write and organize diminish dramatically with stress.
Piracetam, a white powder drug
In early 2009, I was listening to NPR while driving. I parked, and could not get out of the truck. The radio program was discussing nootropics, “smart drugs.” I was compelled to stay in the truck and listen to listen to the radio program.
At the time, I had no idea why I had such a compulsion to listen to the smart drug program. Later, I realized that emotions or compulsions were the way my disconnected neurons used to send information to my conscious self.
The program mentioned piracetam as a nootropic. So, I began to research piracetam — learning it was an anticonvulsant, very safe with essentially no adverse events in many clinical trials at various doses and effective for some people, healing short term memory loss in the elderly. I found a reasonable-looking vendor online and purchased 100+ capsules of 800 mcg piracetam. In the US, it is only sold as a supplement. In Europe, it is Nootropil, prescribed for myoclonus, “twitching”, like restless legs. I took about 2400 mcg once or twice a day for about 18 months. I could not always afford a constant supply so my dosage varied.
My short term memory improved and best of all, my ability to speak improved dramatically. My kids stopped looking at me with their blank faces, mostly. They also said I was much better, so not just my internal opinion.
Late 2009, my younger daughter and I contracted H1N1 swine flu. We were “severe cases” as noted on linked page (Wikipedia) We were sick for months. I had to take prednisone to breathe. The exhaustion was horrible. Just prior to this I was developing what may have been severe arthritis in my hands. I think the months of prednisone may have actually prevented further inflammation in my hands, since by the time I finally got off the prednisone, my hands no longer hurt. My daughter had a difficult time getting over the virus. She struggled with intermittent recurrences for at least five years. I did not take the piracetam when I was sick, since I was asleep for months.
Fast forward about a year, to late 2010. I had been working so there was enough money to try something else for my brain. I had been to a neurologist, who did an EEG. I had slow waves but otherwise no problems. I, of course, argued that my brain did not work as it had. I had an MRI but that apparently showed nothing either. The neurologist was convinced that I could not be impaired unless I had lost consciousness, regardless of what my blood pressure was. Clearly, he was an idiot. I also went to a psychologist for an assessment. The psychologist found that there was no possibility I could have learned what I knew with the current state of my short term memory. I was better from the piracetam, but not much.
Piracetam Links
Piracetam--an old drug with novel properties? Improves learning, memory, brain metabolism, and capacity. Reduces blood clots, protects neurons, restores membrane fluidity (which may be why it helps in many disorders from vertigo to stroke.)
Effectiveness of nootropic drugs with cholinergic activity in treatment of cognitive deficit: a review Piracetam: dizziness, cognitive impairment from ageing, improve cognition from traumatic brain injury, stroke, ischemia, bypass surgery, and prevent impairment from anesthesia
Enhanced Neuroplasticity by the Metabolic Enhancer Piracetam Associated with Improved Mitochondrial Dynamics and Altered Permeability Transition Pore Function piracetam improves neuritogenesis (early phases of neuron/axon growth) and mitochondrial function
The metabolic enhancer piracetam ameliorates the impairment of mitochondrial function and neurite outgrowth induced by ß-amyloid peptide piracetam improves mitochondrial dysfunction from brain aging and oxidative stress.
Neurofeedback 2010
I did get a referral from the nasty neurologist to a counselor for neurofeedback. I was aware of the technique and had wanted to try it for my PTSD but need a doctor’s referral. I was referred for my ADD. NFB was far and away the most successful technique to change my brain for the better. I only could afford a few sessions so there was ultimately not as much progress as I would have wanted but there were amazing changes. After every session, my vision improved dramatically. The world became bright and in better focus. My memory also improved some, I think. I felt I could think more clearly. If there had been less stress in my life, I may have improved more.
The particular approach I used was called LENS Neurofeedback. No training was required for me, I was passive. Small electrode pads were placed on my scalp which created an electroencephalograph of my brainwave activity. After a few moments of getting data, a computer generated signal was sent back into my brain through the same sensors. Although the patient is supposed to feel nothing, I could feel tingling, or something like that.
The whole treatment, from data gathering to feedback lasted maybe 10 minutes. I immediately felt better with respect to anxiety, depression, much less foggy in my head and my vision was sharper immediately. As I sit here thinking about what I do remember, the greatest impression was a sense of calm that descended over me, much like a deep breath on a beautiful mountainside, where I connect back to the universe and the universe to me.
I recommend the LENS type of Neurofeedback. The tiny bit of energy moved my brainwaves out of their rut and allowed them to fall back into the right places.
Neurofeedback Links
The Low Energy Neurofeedback System (LENS): Theory, Background, and Introduction
The effect of neurofeedback on a brain wave and visual perception in stroke: a randomized control trial
Stone Mountain Counseling This site is a great resource, since the director wrote the book on Neurofeedback: The Healing Power of Neurofeedback: The revolutionary LENS technique for restoring optimal brain function. They have research findings and case studies on the website, they even did Neurofeedback on animals that had problems, including horses, cats and a rooster.
OchsLabs They developed the LENS technique and also offer LED therapy. They have a long bibliography of papers, describing all the conditions/diagnoses that Neurofeedback may help. Practitioners listing.
International Society for Neurofeedback & Research The professional organization, with free publications, and lists of practitioners. There are many organizations for Neurofeedback since it has been used for many years.
Low Level Light Therapy or Photons are Magic
Nearly a year ago, I listen to an audiobook, The Brain’s Way of Healing (below) that mentioned low level light or laser therapy, where lasers or LED lights in the near-infrared range were used to improve cognition in people with traumatic brain injury.
I was aware of other uses of light therapy, for wound healing, hair growth, wrinkle and acne removal and also for muscle strains in performance horses. I had used a horse laser on my sciatica pain years ago, to great effect. After lots of research in both the medical and popular literature, I bought an IR CC TV illuminator light and reworked it. I used it, mostly, according to the description described in the first article below (Improved Cognitive Function…) and yes, I think it has helped my brain substantially.
Make your own LED Therapy Light
I bought this from Amazon, the linked one is similar. It is inexpensive for the 96 LEDs with 850 nm wavelength. Be sure to purchase the DC power adapter since it does NOT come with a plugin.
Since it is low-power, I figured I could put the LED board into something less cumbersome than the weatherproof housing and remove the glass so I would get a higher light output.
Remove each of the 4 screws at the corners to take off the glass and its frame. Unscrew the plastic housing for the cord, so whichever end of the cord can be separated from the housing. Figure out how to unmount the LED board.
The cord unplugs internally from the back of the LED board. Completely remove the LED board and cord from the housing. Recycle housing & glass.
Find or make a cardboard box to mount the LED board over. The electrical connector on the back of the LED board sticks out about 1 cm so the box is to accommodate the connector and keep the back of the board safe.
Make a hole in the box for the cord to exit. The box should be slightly smaller than the circuit board so it can be attached to the box in some way. I used a very sophisticated system when the original system of duct tape failed. The large rubber band is actually fine, since the light only gets comfortably warm.
Placement of the therapy light on your head or wherever you need healing is up to you. I illuminate my brain on the top of my head, behind each ear, on my temples, R/L forehead, over my eyes, R/L back of head, top of back of my neck, each side of my neck, according to how much time I have. Based on rough calculations, assuming this light produces about 10 W/sr @20mA, 10 minutes would give about 6 Joules/cm2, about the suggested dose, at each site. But there are many different numbers in the literature and I am none the worse for falling asleep with it on my head. I think the strength of the LEDs fall off with use. As an added benefit, LED light is said to regrow hair. Placements are discussed in the first LLLT reference article below.
Illuminating your brain is best done at night, at least for me, since I tend to go to sleep afterwards, despite my best efforts. I also use it on sore muscles, my artificial knee, scarred areas and skin injuries. I use it on the cats with skin problems. All of these conditions have been tested by NASA and are said to be improved with the lights. It brings a more earthly connotation to the {Healing Light}, but certainly retains some of the magical aspects. Last night I tried it on acupuncture points for my brain, to see if it helped without putting me to sleep, of course, I think it did. Rocket Science and Chinese Medicine.
Low-Level Laser Therapy/Near IR LED Therapy Links
Improved Cognitive Function After Transcranial, Light-Emitting Diode Treatments in Chronic, Traumatic Brain Injury: Two Case Reports Treatment specifics for LED use
The NASA Light-Emitting Diode Medical Program-Progress in Space Flight and Terrestrial Applications All the conditions NASA tested LEDs healing properties
Low-level light therapy of the eye and brain Detailed explanation of how light therapy works
Books about Neuroplasticity, Changing your Brain, Healing
The Mind and Brain, Neuroplasticity and the power of mental force Jeffrey M. Schwartz, M.D. & Sharon Begley Comprehensive book on neuroplasticity. The PDF is available on on the linked page for free.
Outsmart Yourself: Brain-Based Strategies to a Better You An Audible link (Great Courses). I have the PDF if you want to read before you spend any money. Ways to change habits, work better, neuroplasticity.
Norman Doidge books:
The Brain That Changes Itself: Personal Triumphs from the Frontiers of Brain Science An introduction to Neuroplasticity. This is an Audible link, but I have the book, should be available used now.
The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity
Audible link—I have PDF for this book if you would like to read that first. This is the second Doidge book which discusses various approaches to encouraging neuroplasticity. Discusses laser/low level light therapy, which started my research.
PTSD
All the healing I have done is first affected by my PTSD. It is always present and at times, overwhelms anything else. When I worsen, I need to consider the PTSD to evaluate the situation. First, I breathe. Then there is space and time to look at what might be going on.
The best resource for PTSD on the internet is David Baldwin’s Trauma Information Pages. He covers all aspects of PTSD and provides links to articles about the underlying biology and treatment. The information is up to date and gives a historical perspective, since he began this work in 1995. He advocates for animals and over the years, took in many cats with disabilities. I recommend his work very highly.
I also recommend the work of Jennifer Freyd. She is a professor at the University of Oregon. Her work on memory, trauma, and dissociation is without peer. She is a survivor. Her mother started the False Memory Syndrome Foundation, to sue and discredit therapists working with child abuse survivors.
There are many more things to do that are helpful for brains that are not doing what they used to. I did not write about time so much as there not enough space. Thanks for reading.
KosAbility is a volunteer diarist community meeting the last Sunday of each month at 4pm PT/7pm ET. We embrace people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent health/medical conditions, and small, gnawing problems as well as major, life-threatening ones. Our use of "love someone" extends to cherished members of other species. Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. If you are interested in contributing a diary, contact Besame, wilderness voice, Steven Park, or CathyM.