Symptoms correlating with Acquired Brain Injury (ABI)

[livinglighter]

This may be nothing new but over the years, I have been slowly piecing together all the information I have learnt about ME/CFS from various sources. It's been a painstakingly long process as cognitive/sensory impairments impact me the most. My daily struggles and worsening make me have no doubt about the significant implication of the brain in the illness for a lot of us.

Of late, things have become so bad, I had to direct my attention towards research including studies of ME patients brains. Dr Hyde's research and hypothesis about ME include an explanation of patients suffering from inflammation of the brain and spinal cord during the acute stage of the illness, which patients were most likely unaware of at the time. He calls the encephalopathy that then follows the chronic stage of the illness, which is when most patients present themselves suffering from a myriad of problems. That would explain why NICE refers to the condition as Myalgic Encephalomyelitis (or Encephalopathy). I never see the wording Encephalopathy used anywhere else even though it's caused by brain inflammation/disturbance.

When looking at the images of his studies hyperfusion and white matter is mentioned, so I looked it up and saw hyperfusion and white matter is present in the brains of patients with Acquired Brain Injury (ABI). So I started to look closer at ABI and have found out there is a non-traumatic kind that follows infections and diseases including inflammatory conditions.

https://www.headway.org.uk/about-brain-injury/individuals/types-of-brain-injury/

Within the above website, there is so much information discussing exactly the same things I have read about in ME/CFS research/hypothesis, such as loss of homeostasis discussed in the PNEI model of ME/CFS.

Severe anoxic brain injury may occasionally cause damage to the hypothalamus and pituitary gland, which are small structures at the base of the brain responsible for regulating the body's hormones. Damage to these areas can lead to insufficient or increased release of one or more hormones, which causes disruption of the body's ability to maintain a stable internal environment (homeostasis).
https://www.headway.org.uk/about-br...brain-injury/hypoxic-and-anoxic-brain-injury/

I'm now looking into if ABI/TBI is another part of ME/CFS which can be isolated and managed.

Check out the following symptoms and tell me what you think?

What are the symptoms of ABI?
ABI can affect people in many different ways. Some people have physical effects, including:

• weakness, shaking, stiffness or poor balance
• tiredness
• changes in sleep patterns
• seizures or fits
• headaches
• changes in vision, smell or touch

Some people experience changes in their thinking or learning abilities, including:

• problems with memory
• problems with concentration or attention
• difficulty with planning or organisation
• confusion
• difficulty with communication, such as having a conversation

Some people have problems with managing their behaviour or emotions, including:

• mood swings
• being irritable or feeling on edge
• changes in personality

https://www.healthdirect.gov.au/acquired-brain-injury-abi

Symptoms
Traumatic brain injury can have wide-ranging physical and psychological effects. Some signs or symptoms may appear immediately after the traumatic event, while others may appear days or weeks later.

Mild traumatic brain injury
The signs and symptoms of mild traumatic brain injury may include:

Physical symptoms

• Headache
• Nausea or vomiting
• Fatigue or drowsiness
• Problems with speech
• Dizziness or loss of balance

Sensory symptoms

• Sensory problems, such as blurred vision, ringing in the ears, a bad taste in the mouth or changes in the ability to smell
• Sensitivity to light or sound

Cognitive, behavioral or mental symptoms

• Loss of consciousness for a few seconds to a few minutes
• No loss of consciousness, but a state of being dazed, confused or disoriented
• Memory or concentration problems
• Mood changes or mood swings
• Feeling depressed or anxious
• Difficulty sleeping
• Sleeping more than usual

Moderate to severe traumatic brain injuries
Moderate to severe traumatic brain injuries can include any of the signs and symptoms of mild injury, as well as these symptoms that may appear within the first hours to days after a head injury:

Physical symptoms

• Loss of consciousness from several minutes to hours
• Persistent headache or headache that worsens
• Repeated vomiting or nausea
• Convulsions or seizures
• Dilation of one or both pupils of the eyes
• Clear fluids draining from the nose or ears
• Inability to awaken from sleep
• Weakness or numbness in fingers and toes
• Loss of coordination

Cognitive or mental symptoms

• Profound confusion
• Agitation, combativeness or other unusual behavior
• Slurred speech
• Coma and other disorders of consciousness

https://www.mayoclinic.org/diseases-conditions/traumatic-brain-injury/symptoms-causes/syc-20378557

 

[Pyrrhus]

Acquired Brain Injury (ABI). So I started to look closer at ABI and have found out there is a non-traumatic kind that follows infections and diseases including inflammatory conditions.

Thanks so much for sharing that information!

So Traumatic Brain Injury (TBI) is just one type of Acquired Brain Injury (ABI).

You might find the following discussions interesting:

Post-Concussion Syndrome may come with PEM
https://forums.phoenixrising.me/threads/post-concussion-syndrome-may-come-with-pem.83473/

White Matter Lesions?!
https://forums.phoenixrising.me/threads/white-matter-lesions.79023/

 

[livinglighter]

Thanks @Pyrrhus

Both discussions are very interesting. I can't believe Neurologists are ignoring the lesions, the name of the condition and the classification.

 

[livinglighter]

I’m finding my ABI research fascinating. I keep finding more exact similarities such as the gradual functional decline that even Simon Wesley once acknowledged differentiates ME From chronic fatigue.

Although the initial severity of TBI often predicts the speed of recovery, recent research suggests that not everyone follows the same trajectory. Some recover fully, but slowly, while others never fully recover and might experience prolonged functional disability (Yeates et al., 2009) (see Figure 2-1, Subacute Phase)

https://www.ncbi.nlm.nih.gov/books/NBK542595/

I’m moving on to trying to ascertain the diagnosis process for those with non-traumatic brain injury.

Non-traumatic is said to be different in that:

Although the effects of a non-traumatic brain injury are comparable to those associated with a traumatic brain injury, there are some key differences — namely that they are not caused by an impact to the head. Non-traumatic brain injury also has a direct impact on cells throughout the brain. Because it attacks the cellular structure, a non-traumatic brain injury has the ability to spread to all areas of the brain, while TBI only affects concentrated areas.

https://www.shepherd.org/patient-programs/brain-injury/about

Military personal are often victims to TBI as well, this could be why ME/CFS is likened to Gulf War Syndrome. The effects on NTBI and TBI are comparable, it's just the cause of injury and possible manifestation that is different.

 

[livinglighter]

Just as I think, I might be getting closer to possible better symptom management.

Myalgic Encephalomyelitis and Post covid 19 syndrome are excluded from the new upcoming Rehabilitation for Chronic Neurological Disorders, Including Acquired Brain Injury Guidelines (previously traumatic but now changed to acquired). I'm not sure if it's a good or bad thing at the moment as FND is included.

Apparently, both conditions are excluded as there's already guidance on rehabilitation, but actually, the ME/CFS guideline specifically doesn't include rehabilitation.

 

[livinglighter]

I'm following up on my original post as I've done a lot more reading, and have now come across a possible link with ME and post-concussion syndrome that @Pyrrhus also pointed out.

Post-Concussion Syndrome may come with PEM
https://forums.phoenixrising.me/threads/post-concussion-syndrome-may-come-with-pem.83473/

It turns out concussion is also called Mild Traumatic Brain Injury (mTBI), but a concussion is not the only kind of mTBI.

Moreover, you don't even need to lose consciousness to suffer a concussion, as concussion also includes any alteration in mental state at the time of the accident (e.g., feeling dazed, disoriented or confused) even if it only lasted a few seconds/minutes.

For example, I felt dazed, dizzy and disorientated at the time of my acute viral onset, first 'relapse' and first 'relapse' following my remission. It lasted a few seconds - minutes so I didn't present myself at the hospital.

Mild traumatic brain injury
The signs and symptoms of mild traumatic brain injury may include:

Physical symptoms

• Headache
• Nausea or vomiting
• Fatigue or drowsiness
• Problems with speech
• Dizziness or loss of balance

Sensory symptoms

• Sensory problems, such as blurred vision, ringing in the ears, a bad taste in the mouth or changes in the ability to smell
• Sensitivity to light or sound

Cognitive, behavioral or mental symptoms

• Loss of consciousness for a few seconds to a few minutes
• No loss of consciousness, but a state of being dazed, confused or disoriented
• Memory or concentration problems
• Mood changes or mood swings
• Feeling depressed or anxious
• Difficulty sleeping
• Sleeping more than usual

It is generally considered that any problems following an mTBI will resolve with time and the patient is expected to return back to normal with community-based rehabilitation provided (like ME/CFS fatigue clinics for mild-moderate patients). However, full recovery is often not the case. A lot of people go on to suffer from sequelae of severe symptoms/Post Concussion Syndrome.

Here is a good website belonging to a brain injury rehabilitation centre that is also treating Post/Long Covid 19 patients with Post Concussion-like symptoms.

https://www.cognitivefxusa.com/blog/post-concussion-syndrome-and-post-concussion-symptoms-pcs

A Complete Guide to Post-Concussion Syndrome
CONCUSSIONS | TRAUMATIC BRAIN INJURY | POST CONCUSSION TREATMENT

• Share:

Post-concussion syndrome occurs when concussion symptoms persist for months or years after sustaining a mild traumatic brain injury (mTBI) or another type of brain trauma. If you or a loved one received a post-concussion syndrome (PCS) diagnosis, you're probably wondering if it's treatable. (Short answer: yes!) You may also want to know how long recovery takes, what you can do to alleviate symptoms, and whether what you're experiencing is "normal."
We treat post-concussion patients every day and regularly answer these questions for our patients. This guide will help you understand post-concussion syndrome in depth by answering a number of questions, including:

• What Is Post-Concussion Syndrome?
• Can Post-Concussion Syndrome Be Permanent?
• What Are the Symptoms of Post-Concussion Syndrome?
• What If You Still Have Post-Concussion Syndrome Years Later?
• What Types of Tests Can Be Done for Post-Concussion Syndrome?
• Is There a Treatment for Post-Concussion Syndrome?
• What If Your Post-Concussion Syndrome Is Persistent?
• How Long Does Post-Concussion Syndrome Recovery Take?

If you’re experiencing symptoms that won’t resolve after one or more concussions, you’re not alone. And you’re not crazy. On average, our patients improve by 75% after treatment at our center specializing in post-concussion therapy. To see if you are eligible for treatment, sign up for a free consultation.
What Is Post-Concussion Syndrome (PCS)?

Post-concussion syndrome (PCS) occurs when a patient experiences persistent symptoms three months or more after a head injury. Those symptoms could include headaches, brain fog, fatigue, sleep problems, memory issues, vision problems, and more. PCS can develop after a concussive event (falls, car accidents, contact sports, etc) or another closed-head injury. It doesn’t take a direct hit or loss of consciousness to constitute a concussion; many patients suffer concussion symptoms after whiplash or jostling of their brains.

What Causes Post-Concussion Syndrome?
Post-concussion syndrome can develop after a mild, moderate, or severe TBI. It can also come from brain traumas like carbon monoxide poisoning, transient ischemic attack (TIA), chemical exposure, certain viral or bacterial illnesses, surgery, and more.


Post-concussion symptoms stem primarily from dysfunctional neurovascular coupling (NVC), which is the relationship between neurons and the blood vessels that supply them. Affected cells may not be able to get enough oxygen to complete the tasks they are responsible for, like encoding a new memory or reading a book. Sometimes other neurons try to pick up the slack, but they may or may not succeed.
The result are hypoactive brain regions that don’t do their fair share of the work and hyperactive brain regions that either use more resources than they should to get things done or just do more work than they should. This tires your brain out, leading to headaches, feeling overwhelmed, irritability, and other symptoms.
A concussion may also result in autonomic nervous system dysfunction (dysautonomia) and hormone dysfunction. You can read more about those complications via the provided hyperlinks. Dysautonomia and hormone imbalances can produce many of the long-lasting symptoms characteristic of post-concussion syndrome.

Post-concussion symptoms can last for weeks, months, or even years after the concussive event. In general, if your symptoms have not gone away after three months, it’s a good idea to explore treatment options.
Note: To be honest, we don't like the term "post-concussion syndrome." The word "syndrome" implies that we don't understand what causes post-concussion symptoms, when in reality, we do. And not only do we know what causes it, we can treat it, too. We'd love to see the language shift from "post-concussion syndrome" and “postconcussive syndrome” to "post-concussion symptoms." But since many of our patients are familiar with the term "post-concussion syndrome," we've used it here as in years past.

According to the above information taken from the site, Non-Traumatic Brain Injury (nTBI) can also cause post-concussion syndrome.

I've followed up and spoken to Headway who is the UK's largest brain injury charity who have urged me to get referred to a brain injury specialist Neurologist, as they come across a high volume of cases of people being diagnosed with ME/CFS and not receiving appropriate brain injury medical care. Headway advisors consist of trained brain injury nurses.

The advisor said ME/CFS has a lot of cross over symptoms but as I have explained Brain injury has a lot more symptoms defined that I also suffer from.

The next piece of advice was to attend appointments with a relative or advocate and complain if I find my Brain Injury concerns are not adequately investigated due to my questionable ME/CFS diagnosis.

 

[livinglighter]

I also asked if brain injury symptoms fluctuate as mines does, therefore I am conscience of appearing normal during assessments if they take place on a day I am able to perform better. The Headway advisor confirmed brain injury symptoms do indeed fluctuate and people with the condition tend to experience what they call 'good' days (sounds like ME). The advisor assured any brain injury assessment must establish what you experience on both good and bad days before testing begins. The information the patient provides is to be used as part of the whole evaluation - not just the test.

The advisor also informed me that a Brain Injury diagnosis can't even be dismissed on the basis of not seeing any brain imaging abnormalities as there are injuries that can't be seen. So based on what Headway said it makes less sense why ME/CFS symptoms can be considered conversion disorders within neurology because they fluctuate. Even the whole concept of MUS shouldn't apply if ME actually means 'brain and spine inflammation'.

 

[livinglighter]

***Update***

I have discussed this matter with my GP, and they are very supportive of pursuing a brain/CNS injury diagnosis.

I think the issue here is with nTBI. Very little is written about it compared to TBI. So much so that you would think CNS injury only occurs due to external forces. However, damage caused by non-visible injury has already been accepted by neurology to some degree, with neuropsychological testing used as a method to detect it. Unfortunately, subtle non-visible injury is argued by psychiatry as being a non-factor, and the patient is simply experiencing conversion disorder, so here the problem also lies.

Also, with acquired brain injury/head injury, it is already accepted that there are several causes, including epidural infection, viral and bacteria infections, strokes, suicide attempts, hypoxia, diseases, coma, shock, and the list goes on. If ME/CFS is a disease as NICE suggests it is, then I would think it is just one of many causes of ABI.

You can go into shock from hearing terrible news or witnessing traumatic events. The focus is not on the emotionally stressful events you may have been enduring at the time but on the loss of oxygen to vital organs that may cause injury that some people do not recover from.

Another important thing to know is you don't need to lose consciousness during a concussion - most people don't. Most people experience a 'brief shift in mental clarity and other hallmark symptoms. In such a case the person may not have been aware of suffering a concussion and didn't present themselves at a hospital, which should have triggered Head Injury care and follow-ups.

I think it is worth looking into as a clear MRI scan doesn't rule you out of having a brain injury/disorder, leading to appropriate care.

There is also an immune response that is sometimes triggered along with Brain/CNS injury, which is also said to be part of ME/CFS. New research also says it also happens to some patients with LongCovid.

https://news.harvard.edu/gazette/story/2022/03/does-nerve-damage-contribute-to-long-covid-symptoms/#:~:text=A new study suggests that,COVID, even after mild cases.

 

[YippeeKi YOW !!]

@livinglighter and @Pyrrhus
I was stunned at how many of the symptoms and etiologies just reached out and bitch-slapped me, repeatedly.

This is a TERRIFIC thread .... I have to come back to it, because, you now, brain function. But it clanged soooooo many bells that I can't ignore it.

Thank you @livinglighter for posting this info and for the research efforts you're sharing here, and thank you @Pyrrhus for the follow-up info and links.

Ahhhh'll be bahhck ....

 

[livinglighter]

@livinglighter and @Pyrrhus
I was stunned at how many of the symptoms and etiologies just reached out and bitch-slapped me, repeatedly.

This is a TERRIFIC thread .... I have to come back to it, because, you now, brain function. But it clanged soooooo many bells that I can't ignore it.

Thank you @livinglighter for posting this info and for the research efforts you're sharing here, and thank you @Pyrrhus for the follow-up info and links.

Ahhhh'll be bahhck ....

I’m glad you’ve found the thread useful.

I’m glad @Pyrrhus also provided more information too.

The symptoms and etiologies also smacked me in the face, when I came across brain injury. Finally, I can see everything that I suffer from with pathology and full explanations.

I also have lots of detailed health records filled with reports of symptoms that clearly correspond with the primary/secondary effects of ABI.

I’ve been away discovering so much. It turns out the NHS is currently treating long covid patients with exercisce intolerance at sports injury post concussion units. So what we do know is that viruses can also cause mild brain injury (concussion) with PEM. They test those patients for various hormone and gas exchange abnormalities.

I’ll try to update the thread with my finding as much as I can.

Post Covid Clinic also said they are treating Long Covid as a brand new illness, so all LC research leading to treatments and services will be for Long covid patients only. They wouldnt even let me join LC fatigue clinic due to my ME diagnosis.

 

[YippeeKi YOW !!]

I’ll try to update the thread with my finding as much as I can.

Only when and as you can, LL.... life's hard enough without additional pressure ....

Post Covid Clinic also said they are treating Long Covid as a brand new illness, so all LC research leading to treatments and services will be for Long covid patients only. They wouldnt even let me join LC fatigue clinic due to my ME diagnosis.

Yeah, in the early days of LongCovid, when everyone was saying, "This is the one !!! Now they'll have to pay attention to ME and deal with it, cause they're so incredibly similar .... we're on our way !!! Hallelujah !!!", I had a totally different and much less sanguine view, which sadly, has turned out to be accurate.

Drs don't shift off their reductionism (Occam's Razor is, like, their mantra) and prejudice just because there's irrefutable evidence. I mean where would the human race be if they ran around changing their minds every 2 hours just because there was evidence to be considered ....

 

[livinglighter]

Just as I think, I might be getting closer to possible better symptom management.

Myalgic Encephalomyelitis and Post covid 19 syndrome are excluded from the new upcoming Rehabilitation for Chronic Neurological Disorders, Including Acquired Brain Injury Guidelines (previously traumatic but now changed to acquired). I'm not sure if it's a good or bad thing at the moment as FND is included.

Apparently, both conditions are excluded as there's already guidance on rehabilitation, but actually, the ME/CFS guideline specifically doesn't include rehabilitation.

I think the Rehabilitative guideline for pwME and LC referred to (https://www.nice.org.uk/guidance/gid-ng10181/documents/draft-scope - under number 19) might be the: Rehabilitation after traumatic injury
NICE guideline [NG211]Published: 18 January 2022