Early warning signs of brain injury fatigue: It's like a switch is flipped

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Fatigue is a personal experience that is different for everyone. It may feel like overwhelming tiredness, which makes people unable to complete normal activities of daily living. It may also worsen the difficulties associated with a person’s brain injury, for example, forgetfulness, irritability, slurred speech, distractibility or dizziness.

Recognising the signs of fatigue as quickly as possible can be hugely beneficial, allowing people to take steps to rest and in many cases lessen its impact.

Our Brain Drain: Wake up to fatigue campaign showed that almost 90% of brain injury survivors’ lives are negatively affected by ‘pathological fatigue’, while three in four felt that they needed help to understand the effect that fatigue has on them.

We asked our followers on social media to share what fatigue means to them.
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Physical signs
Many people told us about the physical signs they experience when their fatigue worsens.

Chris Walsh says, "it shows in my face. My head feels like it will explode, I feel sick, anxious and disorientated.”

Beverley Roberts describes feeling more pain than normal when she’s fatigued. “I also start to walk off balance”, she says.

Other people reported their head and limbs feeling heavier, as well as problems with temperature regulation – feeling either too hot or too cold.

Communication problems
A change in speech was one of the more common responses, which may be caused by the fatigue exacerbating cognitive difficulties resulting from the brain injury.
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I can’t think properly, my speech gets a bit disjointed and I’m not able to think about what I’m saying before I say it.
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"...no amount of sleep can ever elevate or leave me feeling refreshed”.
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All sounds very familiar.
I wish there were another word to encompass these symptoms. I note they use the term 'pathological fatigue'.........
 
Am posting this because it is interesting to see the number of different measures used to assess cognitive issues after strokes. AFAIK very few, if any are used in ME/CFS research or tested for as part of primary care.

Background
Cognitive impairment affects up to 80 percent of the stroke population, however, both the available evidence about post-stroke cognition and the measures used to evaluate it longitudinally have not been well described. The aims of this systematic scoping review were: to identify and characterize studies evaluating cognition longitudinally after stroke; to summarize the cognitive instruments used and the domains they target; and to organize cognitive domains assessed using the International Classification of Functioning, Disability and Health (ICF).
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Cognition was evaluated with 356 unique instruments, targeting 95 distinct cognitive domains, and 17 mental functions from the ICF. The Mini-Mental State Examination was the most frequently used instrument (117 reports, 46%). Other tools used longitudinally were the Trail Making Test (17% of reports), tests of verbal fluency (14%), the Functional Independence Measure (14%), the Montreal Cognitive Assessment (13%), the Digit Span (11%), and the Stroop test (10%). Global cognition was evaluated in 170 reports (66%), followed by higher-level cognitive functioning (29%), memory (28%), language (21%), attention (21%), and perceptual skills (14%). Studies using functional (or performance-based) cognitive assessments over time were scarce (< 1%).
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https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0221735
 
This is interesting. I can have occasional short term episodes where my coordination becomes like some-one with cerebral palsy. Or so it feels to me.

The most recent episode was when I went out for a restaurant meal. We went mid-week thinking it would be quieter for me (we were a party of 3 couples - all old, familiar & very dear friends). Anyway the place was echoey and noisier than anticipated. We ended up eating 3 courses instead of the usual 2, and I was having a great time..... until suddenly I wasn’t!

I had a few minutes of thinking - ‘Ah, whoops, this is getting wonky, I really “should” make tracks now, but hey I’m having fun, and maybe if I just shut-up for a while and chill I’ll be okay .... I’ll not make a fuss just yet’, to feeling - ‘OH SHIT! I’ve gone and done it now! I really can’t walk out unaided, and as for explaining things to the others as I leave, forget it!!!’

Luckily for me, my good man is quick to notice, and we exchange those understanding looks, and he initiates a smooth extraction procedure for me. He explains that he’ll be back in a minute. I grab his hand, and concentrating very hard force my wonky legs to work. I can’t judge gaps between the furniture easily, nor balance well and I get a kind of tunnel vision as I make my way out in stops and starts leaning heavily on his hand. He gets me to the car, and then leaves me in peace for 20 minutes. This is what I prefer. Usually I recover my ability to walk & talk within an hour, but I may be delicate for some time afterwards.

The interesting thing is this is entirely different to feeling tired. I don’t usually feel tired while this is happening. (I can have “tired” as a separate thing though, just like anyone else, but that is quite different).

So what happens during an episode like this? It comes on quite quickly, but is never instantaneous. I always “know” something is up for maybe 10 minutes or so in advance. I can avert the worst of it, if I quickly find somewhere quiet to rest, but only if I pay attention to the early signals and don’t try to ignore them.

It does feel like something flips physically - it’s usually when I’m in a noisy environment. (I’m not, and never have been a worrier, so this is in no way an emotional issue).

Perhaps we do need these sort of changes measured properly.
(Not that I’d want to set myself up for the experiment really!)
 
A thought experiment:

If normal healthy people were given a tablet to temporarily induce significant hypothyroidism (maybe suppress their TSH or something), would they then experience symptoms akin to ME? Or is the experience completely different? My wife developed hypothyroidism in parallel with ME, so not possible to distinguish what symptoms attributable to which.
 
It’s interesting but what ist there in head injury fatigue descriptions are the things that make ME different to chronic fatigue, even pathological persistent fatigue which I’m sure has heavy life impact. Obviously this was a fatigue focus piece but accompanying that , They werent reporting severe pain, significant immune symptoms or prolonged or detrimental PEM from what I saw. They do report feeling more pain temperature control and feeling sick which is of interest. So I think that its useful to look to other conditions possibly to understand the fatigue component which might apply across illness/injury - and nab the research findings and suggestions - but not useful to lump ME in as another fatigue state like this or cancer fatigue because ME has its own complex presentation, type of progression and severity potential. So MS has chronic fatigue but isn’t called chronic fatigue. If we do share the fatigue pathway, where do we get additional symptoms and worsening with exertion from?
 
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Barry said:
A thought experiment:

If normal healthy people were given a tablet to temporarily induce significant hypothyroidism (maybe suppress their TSH or something), would they then experience symptoms akin to ME? Or is the experience completely different? My wife developed hypothyroidism in parallel with ME, so not possible to distinguish what symptoms attributable to which.
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My husband took a thyroid storm, producing so much thyroxine it burnt up all muscle and his eyes turned yellow as his liver became damaged. He was treated with radioactive iodine to destroy his thyroid so became hypothyroid overnight.

He is treated with thyroxine and the dose has been the same for years but he never experienced anything like ME. If anything, the excess thyroxine was more like ME as it flooded his system with adrenaline causing tremor and itching under the skin.

Using adrenaline or something like that feels like an explanation for why we can do more sometimes. Going out could be one of those times. It gives us the ability to do more but we crash further. I use it to visit my grandchildren despite the cost. Interestingly, coming home I feel as if I could do some cooking or do something interesting. I find myself making plans. Then the effect fades and back to real life!
 
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