lassesen 2:41 pm on September 6, 2015  

Recovering from Brain Injury

Traumatic Brain Injury or CFS Brain Injury do not differ in recovery techniques. Dr. Daniel Amen (well known from PBS) did a SPECT scan on one of my loved ones when she had acute CFS, his reading of over 50% of her brain having abnormality in blood flow. His best opinion of what he saw was massive inflammation caused by an infection (viral or bacteria).

If you magically eliminate the infection causing CFS today, it will take months for the inflammation to subside, with recovery ongoing for many years. You may get your energy back quickly, but cognitive function will likely be slower. People who went to immediate remission from fecal transplants, found their energy jump quickly as did cognitive ability (which does not mean full recovery of prior cognitive ability — often there is a need to retraining).

First, I will give what has been documented to help/work. Then, I will give my spin from my own experiences. As I stated in my last post, mild Traumatic Brain Injury (TBI) such as far a car accident, is in general far less challenging than the CFS Brain Injury.

PubMed Findings 

Regardless of the cause, pro-active treatment can greatly reduce the long term consequences. What treatments are available?

Note: “Recent systematic literature reviews have concluded that there is minimal evidence to support any specific treatment” [2015]  “Although the long-term effects of brain damage caused by differing modes of head injury seem to appear identical in the long term (Belanger et al., 2009)” [2015]

  • Hyperbaric oxygen therapy: “Analysis of SPECT imaging revealed rectification of the abnormal brain activity: decrease of the hyperactivity mainly in the posterior region and elevation of the reduced activity mainly in frontal areas.” [2015]
  • Brain “fog,” inflammation and obesity: key aspects of neuropsychiatric disorders improved by luteolin.[2015]
    • ” Brain “fog” characterizes patients with autism spectrum disorders (ASDs), celiac disease, chronic fatigue syndrome, fibromyalgia, mastocytosis, and postural tachycardia syndrome (POTS), as well as “minimal cognitive impairment,” an early clinical presentation of Alzheimer’s disease (AD), and other neuropsychiatric disorders. Brain “fog” may be due to inflammatory molecules, including adipocytokines and histamine released from mast cells (MCs) further stimulating microglia activation, and causing focal brain inflammation. Recent reviews have described the potential use of natural flavonoids for the treatment of neuropsychiatric and neurodegenerative diseases.”
  • “Piracetam may reduce it, as may bright blue light.”[2014]
  • Neuroprotective effect of levetiracetam on hypoxic ischemic brain injury in neonatal rats [2014].
  • “Data show that treatment using dietary and parenteral zinc supplementation can reduce TBI-associated depression and improve cognitive function, specifically spatial learning and memory.” [2013]  Zinc dosage: 30-40 mg/day see this post
  • “we review relevant experimental and clinical data on supplemental substances (i.e., curcuminoids, rosmarinic acid, resveratrol, acetyl-L-carnitine, and ω-3 (n-3) polyunsaturated fatty acids) that have demonstrated encouraging therapeutic effects on chronic diseases, such as Alzheimer’s disease and neurodegeneration resulting from acute adverse events, such as traumatic brain injury.” [2014]
    • “Although both animal models and human studies of brain injuries suggest they may provide benefits, there has been no clinical trial evaluating the effects of n-3 fatty acids on resilience to, or treatment, of TBI. ” [2013]
  • ” The study included weight loss (if appropriate); fish oil (5.6 grams a day); a high-potency multiple vitamin; and a formulated brain enhancement supplement that included nutrients to enhance blood flow (ginkgo and vinpocetine), acetylcholine (acetyl-l-carnitine and huperzine A), and antioxidant activity (alpha-lipoic acid and n-acetyl-cysteine)…. [resulted in ] statistically significant increases in scores of attention, memory, reasoning, information processing speed and accuracy ” [2011]
  • Effects of mild exercise on cytokines and cerebral blood flow in chronic fatigue syndrome patients [1994].
  • “The use of atorvastatin and magnesium sulphate was associated with a lower incidence of new postoperative neurological deficit.” [2013]
  • “Through these varied mechanisms, gut microbes shape the architecture of sleep and stress reactivity of the hypothalamic-pituitary-adrenal axis. They influence memory, mood, and cognition and are clinically and therapeutically relevant to a range of disorders, including alcoholism,chronic fatigue syndrome, fibromyalgia, and restless legs syndrome. Their role in multiple sclerosis and the neurologic manifestations of celiac disease is being studied. Nutritional tools for altering the gutB microbiome therapeutically include changes in diet, probiotics, and prebiotics.” [2014]
    • “So far, psychobiotics have been most extensively studied in a liaison psychiatric setting in patients with irritable bowel syndrome, where positive benefits have been reported for a number of organisms including Bifidobacterium infantis.” [2013]
    • The gut reaction to traumatic brain injury. [2015]
  • “Mast cell (MC) activation disorders present with multiple symptoms including… gastrointestinal complaints, irritability, headaches, concentration/memory loss and neuropsychiatric issues.” [2014]
  • Treatment of chronic fatigue with neurofeedback and self-hypnosis [2001].
  • [Neuroprotective mechanisms of cannabinoids in brain ischemia and neurodegenerative disorders] [2015] – no human studies have been done.

To rephrase for the cognitively impaired reader:

  • Low histamine diet (or at least a wheat free diet)
  • Bifidobacterium infantis (Align) and Prescript Assist probioitcs. Note that taking random probiotics may actually make things worst!
  • Items that improves oxygen delivery to the brain
    • Exercise
    • Hyperbaric oxygen therapy
    • Piracetam and other nootropics, ginkgo and vinpocetine
    • alpha-lipoic acid and n-acetyl-cysteine (NAC)
    • Anti-coagulants: Grape seed extract, heparin,
    • Niacin
    • NOTE: hypercoaguation (too thick blood) is very common in CFS (read more here and
      Dave Berg Talk #4 ) and thus there is a double advantage of taking these.

Personal Experience

The items that resulted in the greatest observed improvement for me in cognitive function within minutes (in order of precedence)

  1. Piracetam (and other racetams) – up to 6 x 800 mg /day
    1. One source of supply is https://smartpowders.com/brand/smart-powders/ and  http://smartmoleculeshop.com/
  2. Niacin (flushing type — often 500mg 2-3 times a day. Consult with a MD before starting)
  3. Aspirin / Grape Seed Extract

Note on Racetams

Racetams can be prescription in some countries and over the counter(OTC) in others. For one CFS episode, my source for piracetam was a CFSer in the Czech republic and India (purchased on site by a friend — manufactured in Europe).  Today, I have a 3 kg jar of if in storage from when it was available on some US web sites. As often happens, because it is effective FDA reclassified it as a drug and stopped OTC sales (hence purchasing the jar when word got out of FDA’s decision). The other racetams are still available but far more expensive, usually the cheapest form is powder and make your own “00” capsules.  for example: Aniracetam 750 mg 60 capsules – $40 for 45 gm  versus $22 for 100 gm of powder.

You should make sure that you read up on each, for example this site, http://nootriment.com/aniracetam-powder/   Each one has slightly different impacts and I ordered each one to determine which had the greatest apparent impact. For me, piracetam won! There are some studies supporting this “caused significant decrease of the CF severity, which was more prominent in the MS group, while in another group it was associated with a decrease of depression severity” [2006][2007]

Adapt and don’t lament where you were

Exercising your mind without stressing the mind is ideal. CFS patients tend to be Type A ([Relationship between chronic fatigue syndrome and type A behaviour[2009]). This personality type tends to push the envelope – whether this pushing is the result of excessive parental pressure when young or because of specific bacteria in the microbiome or … is unknown.  This personality trait also results in “push and crash” cycles that often result in zero or negative progress over time.

A classic mistake in recovery is pushing beyond your actual physical and mental envelope which can often result in actual setbacks and depression over your current state. I grew up with a handicap and learnt to strongly discipline myself in order to have a continuous series of small positive successes that built instead of a serious of major failures that destroyed confidence and produced stress…  And stress is well known to cause relapse in both CFS and brain trauma.

For example, you may start with easy Sudoku and once you literally get bored with it, then increase to the next level of difficulty. I recall sitting at my computer for hours playing the same game (pre-Sudoku) for months and then I found that I suddenly had become bored with it (while other symptoms were improving) and found a slightly more challenging game.  Again, the criteria is not pushing your limits (or even trying to find them!), rather boredom, keeping in your envelope.

Return to Work Strategy

I think that giving you examples from my own experience may illustrate the need to “downgrade your expectations and slowly, safely, work upwards keeping in a safe envelope.

Example 1

  1. On a triple honors program with top marks in the nation on Physics and Mathematics contests (including better scores than Bill Gates), life path was suppose to be a Ph.D. and then a Professorship somewhere.
  2. Adapation:
    1. Stop working on scholarship, paid for university by becoming a store clerk and dropped honors courses so I could get my degree, a lower level goal
    2. Instead of going to Grad School, did a professional year in Education to become a High School teacher
      1. Lots of pressure not to be so foolish…
    3. After 3 years teaching, became bored and mind seem to be recovering, so started a part time MBA program
    4. Did well and changed to a more demanding M.Sc. in Commerce completed, got accepted for a Ph.D. (but opted to work a few years in business instead, again, avoiding pushing the envelope and opted for the “low road”)
    5. Eventually moved to Microsoft as an employee, fully challenged etc..

Example 2

  1. Onset happened while at Microsoft (bad boss and stress scenario)
  2. On disability pay and appears to be recovering
    1. Did volunteer/unpaid work for local company. Started at 2hr/day and slowly worked upwards over several months to a full 8 hrs.
  3. Took my time to find the “right job” – the job was one that required little new learning and heavily use of skills from prior to CFS onset. Goal was to minimize the need for learning with a recovering mind. Worked there for 3 years (during which my position went from Software Architect to Principle Software Architect to Engineering – Manager). I was offer the job of President, which I turned down because it was not a “safe choice”, it was stretching my proven limits — this is a no-no

Example 3

  1. Onset happened while at Amazon (flu and “the amazon culture” was the triggering event)
  2. On recovery, again looked for a job that required little new learning and heavily use of skills from prior.

Some example Strategies

  • Say you were a biologist or chemist, instead of stepping back into the same position, find work as a laboratory assistant (yes, you may be overqualified, but the brain injury is a significant factor).
  • If you were in sales management, perhaps consider returning to being a sales associate.
  • If you have a master’s or a bachelor’s degree, consider becoming a substitute teacher, doing single days of work at different locations allows you to determine your limits in a safer way
  • Do not set yourself to become embittered by setting your threshold for a job unrealistically high. You may have a Ph.D. but working at MacDonald will do you a lot more good than not working.
    • I know CFSers with a lot of secondary issues, back problems, headaches, noise sensitivity etc who have adapted to their restrictions and are building a personally rewarding employment opportunity.  “Adapt or become embittered!”

Yes — it is unfortunate that you cannot resume where you were! But really — would you prefer resuming with the same position and then do a disastrous job doing it which will undermine your confidence and possibly result in a very bad reference for your next job????

Once you have a job, if you find the job has challenges, see if your MD will give you an Americans With Disability letter. In general, most firms (except Amazon) will respect it and work with you to be successful.

For interviews, have a cover story ready for your choice of going for a ‘job downgrade’ — do not mention disability (they cannot ask if you will need an accomondation). Often demands and needs of a family member can be a good cover story for why you are applying for a job below you past work history. That is 100% truthful — the family member may actually be yourself!!

Bottom Line

After Brain Trauma, you are almost like a recent immigrant from another country. You need to learn your current capabilities (realizing they will evolve/improve constantly) given your current abilities (which most people tend to deny the loss of — unfortunate), as well as getting “re-credentialed” — you have been off the job market for a while and things have moved on. You do NOT want to add the stress of an aggressive learning curve to your recovery.

Today, I will typically go for several brisk 5 mile hikes in the mountains every weekend to keep up my physical state. Piracetam, aspirin and niacin are part of my regular supplements on work days — they still result in a significant improvement of cognitive skills for the day. I often have joked, “well, I am of the hippie generation, so doing mind altering drugs is expected — just how I need to alter the mind has changed and the stuff is legal ;-)!”