Post-Concussion Syndrome may come with PEM

Pyrrhus

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A common question that people ask is:
"Are there any other conditions that also come with PEM?"


A suggestion that Post-Concussion Syndrome (PCS) may possibly come with PEM/PENE seems to pop up often. Post-Concussion Syndrome follows a Traumatic Brain Injury (TBI):


However, I am not aware of any published literature on PEM/PENE in Post-Concussion Syndrome.

Related discussion:
Interesting article about post-concussion persistence: note the similarity to ME
https://forums.phoenixrising.me/threads/interesting-article-about-post-concussion-persistence-note-the-similarity-to-me.45086/
 
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Hip

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It's interesting that if you get a traumatic brain injury (TBI) from a blow to the head, this can result in three different conditions which can each cause ME/CFS symptoms:

The first condition is the post-concussion syndrome mentioned above. This usually resolves within six months, though sometimes can last more than a year.

The second condition is hypopituitarism, where the pituitary is affected and produces a reduced amount of hormones such as human growth hormone, which can cause ME/CFS-like symptoms. Hypopituitarism clears up once it is identified and the correct replacement hormones are provided.

And finally, a TBI may also trigger actual ME/CFS.



Note that a physical trauma to the head or neck may also lead to various types of spinal injury or brainstem conditions which can cause ME/CFS-like symptoms. These conditions include craniocervical instability and Chiari malformation.
 
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Pyrrhus

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A quote from a Post-Concussion Syndrome (PCS) patient:

brainline.org said:
I was hit with a spinnaker pole when sailing four years ago which resulted in a concussion. I have an ongoing problem with fatigue and, in particular, exercise intolerance. While I am fine at rest and doing gentle activity, any kind of more strenuous activity results in fatigue and headaches. Often these symptoms are delayed and appear after activity or the next day.
(emphasis added)
Source: https://www.brainline.org/author/elliiot-roth/qa/improving-tolerance-exercise-after-brain-injury
 

Pyrrhus

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Another quote about someone with PCS:

thestar.com said:
A lifelong recreational runner, she now found even a dash to the streetcar could be too much.

“I always felt a bit like people thought I was exaggerating. Even a few weeks after, there was always people that would say ‘Really? Are you seriously still feeling symptoms?’ … or ‘I had concussions before and I got right back into the swing of things.’ I just felt like I was weaker.”

Six months in, she tried a short run. “I swear I felt nauseous for almost three weeks after.”

Now, a year and a half after her fall, Carmichael is much improved. Her symptoms are manageable. But she still gets headaches. And she still can’t run.
Source: https://www.thestar.com/news/insight/2016/06/05/life-in-the-shadows-of-the-concussion-debate.html
 
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This may sound a little goofy but here goes. I was diagnosed with Chronic Fatigue about 2 years ago. PEM was always a huge problem. Last June (2020) I began having really weird electrolyte issues which turned out to be related to elevated ammonia issues - all too common with us folks unfortunately. It took a while for my doctor to figure out that ammonia was causing my problems. During that period of confusion, I ended up in the hospital and had a convulsion because of low sodium. I healed more or less - or so I thought...

Fast forward a little over a year to this week. Every time I start to make real improvements, something happens and the PEM is, once again, just plain awful. Plus I have been unable to stop gaining weight even though I eat a lot less these days and exercise to the best of my ability. However, I do have insulin resistance (genetic) and have been on Metformin since 2008.

So, my Internist persuades me to give Rybelsus a try. When he said, "It makes folks lose weight like crazy" I was all in. OK - sounds great. I started the 30 day introductory phase and GAINED 5 lbs. What??? But I see on the Rybelsus website that the smaller dose is not enough to trigger weight loss. OK, I'll be patient.

I started the regular dose and quickly lost 2 lbs. Alright - moving right along - yay. Then a few days ago, I gained a pound. I was devastated. WTF????? Like @Mary I am a big believer in Muscle Testing and have used it soooooo much to help me through all the craziness of the last 2 years. So, I'm asking my body why are we gaining weight. (note- in the past my body just always said, I don't know when asked about weight gain). This time my body does answer and it leads me to a problem with a hormone from my HPA axis. I start researching and see Human Growth Hormone and HGH releasing hormone. My body says BINGO - that's the problem.

I looked at the symptoms of HGH deficiency and felt sick. Most of the symptoms were a yes. Me and my doctors all thought my problems were related to Cortisol, Insulin, and Chronic Fatigue. Partly right. But we all missed a problem with HGH. Now I'm thinking I need to start HGH replacement (sheesh). But I decide to ask my body about using my Red Light LED array first. My body directed me to a spot right behind my ears. I placed Red Light right behind my ears for 2 seconds. I immediately felt a surge of energy being released into my brain.

I've been doing that once a day for the last 2 days, and I am beginning to feel really human for the first time in 2 years. Yesterday I actually walked for over 30 minutes without having to stop and rest. I am very hopeful but I've been hopeful before - only to be disappointed.

The convulsion must have been enough to cause damage that resulted in low HGH. I know this all may sound kinda crazy but if Red Light Therapy could help someone else, I'm willing to sound a little crazy.
 

Mary

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Hi @Carnation4000 - really interesting story! I am concerned though about the Rybelsus - did your internist prescribe it for weight loss? it has a black box warning about thyroid C-cell tumors (in rats and mice) and also can lead to pancreatitis, kidney injury, diabetic retinopathy . . . - see the package insert.

I know it's hard to lose weight, especially with insulin resistance - but I don't think drugs like this are the way to go!

About your red light therapy - that is very interesting! Can you give a link to the red light device you're using?

I'm really glad to hear your muscle testing helped you so much! Mine has never given me that much information . . . but I would be really interested to see if the red light continues to help!
 

perrier

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The common denominator for all these pem situations will turn out to be hypoxia and reperfusion injury, I would bet anyone who dares any kind of money ...
OK, I'm ready to buy this, but which organ or part of the body for CFS/ME?
 

bensmith

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So i have actaully had post concussion syndrome. And yeah its def really similar, and in some ways the same. But ultimately, pem is different in my experience.

basically i would say pem is cellular and post concussion is brain only. They can both lock up your brain, but its just not the same, even if you have the same exact manifestation and experience, i could tell they were different on a deeper level.

i hope this makes sense, im not sure it does.
 
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Hi @Carnation4000 - really interesting story! I am concerned though about the Rybelsus - did your internist prescribe it for weight loss? it has a black box warning about thyroid C-cell tumors (in rats and mice) and also can lead to pancreatitis, kidney injury, diabetic retinopathy . . . - see the package insert.

I know it's hard to lose weight, especially with insulin resistance - but I don't think drugs like this are the way to go!

About your red light therapy - that is very interesting! Can you give a link to the red light device you're using?

I'm really glad to hear your muscle testing helped you so much! Mine has never given me that much information . . . but I would be really interested to see if the red light continues to help!
Hey Mary! Well, I am concerned about the Rybelsus too. However, I decided to take a gamble. Last summer is when I started having the elevated ammonia. I gained almost 30 lbs in 2 months! And, of course, I have been unable to lose any of it even though the elevated ammonia is a thing of the past. I have diabetes on both sides of my family and was on Metformin since 2008. Blood sugar has always been an issue for me, and it has recently gotten worse. I eat low glycemic and exercise as much as possible - emphasis on resistance training since it doesn't use up as much ATP. I go back to my internist soon and we'll see. But I understand totally what you're saying. Thanks for your concern!

I started muscle testing in 2015 and used it to monitor my vitamins and minerals. How much should I take? That kind of stuff. But in 2019 I was in the beginning of CFS and was still dealing with a bad case of Restless Legs that kept me from sleeping. Restless Legs and lack of sleep were the reasons I came down with CFS. I began to be really afraid. CFS and very little sleep? That's a bad combination. Anyway, out of desperation, one day I asked my body, "Do you know how we can stop this RL?" The answer was yes. OK, so what do we need? Different food? Different vitamins? Different minerals? Then I thought.... Amino Acids? And I got an answer. Yes to the amino acid question. I pulled up a list of amino acids on the internet and read each one off. When I read Proline, my body said, yes, that's the one. When I started taking it, I cried with relief. The change was swift and dramatic. I could actually sleep through the night.

Since then, I've gotten bolder in asking my body similar questions. And it's been incredibly helpful. Basically, I've started asking my body - "how do we fix this?". I've read info here on the forum and asked, "Body can this help us?" And it answers. But, as I'm sure you know, sometimes it's wrong or just doesn't know. But it usually leads me in paths that are so helpful. I am so much better than a year ago and hoping to do even better. Oh - my body says it likes the Rybelsus because it has solved several pancreas problems. But that bears watching. Like I said, sometimes it's wrong ;)

Here's the link to my LED Red/Infrared/Blue light array - https://www.elixa.com/shop/120-led-triple-array-blue/
I bought my first array from them back in 2007. There are lots of options out there these days. I can say their products have held up really well. I have 3 arrays, and they all still work just fine. I won't go out of town without one - just in case. They help with bruises, infections, and more nebulous things like the brain. If I'm doing anything on my brain, I start with 1 second and see how that goes. The next day I MAY go up to 2 seconds....or maybe not. I've used my arrays on my liver and on my adrenal glands. But I always start with very short times.

I'll let you know how the red light - growth hormone thing goes. So far, so good :thumbsup: But, I've been disappointed before -sheesh....
 

Mary

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@Carnation4000 - thanks so much for your detailed reply! I've tried similar things with MT, with mixed results but I think I will try your techniques :nerd:

And thanks for the link to your light array! I'm going to do a little more research. I've been reading about red light therapy and am beginning to think I should just give it a try. That's really impressive that you were able to walk for 30 minutes without having to rest!
I know this all may sound kinda crazy but if Red Light Therapy could help someone else, I'm willing to sound a little crazy.
That's exactly how I feel when I post about muscle testing - I know many if not most think it's crazy but it has helped me so much, so I keep posting about it . . .

Thanks again and keep us posted about your red light and HGH experiments! :)
 
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@Mary - you're most welcome! It took me years to finally start asking questions in a way that really helped, and that was out of desperation. I usually start with - do we have too much of something or not enough? Does it involve an organ? Or is it the brain? And then to the vitamin, mineral, hormone, enzyme, or amino acid question.

Yup - red light therapy can be so helpful! Just do your homework and go very slow. Like I said, I often start with 1 second just to see how it goes. It is definitely worth a try!!!

I was shocked that I could walk for 30 minutes too. Just a couple of weeks ago, I was having to stop and rest at about 10 minute intervals. I was in our pool today for over 30 minutes. I did have to slow down a couple of times because I'm out of shape. But I didn't have to stop!!!!

You can always ping me to back you up if you're posting about muscle testing. I keep telling folks about it but they usually give me that look :confused::eek:. And my family thinks I'm crazy. Sigh....
 

mariovitali

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Happy to see this thread @Pyrrhus

Concussion is a type of TBI :


A concussion is a type of traumatic brain injury—or TBI—caused by a bump, blow, or jolt to the head or by a hit to the body that causes the head and brain to move rapidly back and forth.
In a previous post i explained how Liver Injury may be a common factor as a trigger for ME/CFS through viral infection, chronic stress and even TBI


In the study, published online in The American Journal of Pathology, the Georgetown University Medical Center (GUMC) research team reveals for the first time that in an animal model, brain injury produces an inflammatory response in the blood and body's organs, especially the liver. The liver responds with increased production (up to a thousand-fold) of a protein that ramps up inflammation in the brain, leading to chronic inflammation, nerve cell death and reduced blood flow.
https://www.sciencedaily.com/releases/2015/09/150921090154.htm

and

However, injury to the brain also produces alterations in the bloodstream and peripheral organs. Recent breakthroughs in brain injury research investigate the link between brain inflammation and peripheral organs; and one of the most sensitive organs to inflammation is the liver. The systemic production of cytokines and chemokines by the liver and other organs, in response to the brain damage, is an essential factor of the inflammatory secondary response in the brain due to communication of brain-periphery.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4810977/
 

Pyrrhus

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In a previous post i explained how Liver Injury may be a common factor as a trigger for ME/CFS through viral infection, chronic stress and even TBI

https://www.sciencedaily.com/releases/2015/09/150921090154.htm
and
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4810977/
That's really interesting, so brain inflammation may lead to a (presumably sterile) liver inflammation, that is indeed quite interesting.

I wonder how much of the "liver inflammation" is simple inflammation and how much of it is increased metabolism to produce all the nutrients needed by the inflamed brain...
 

Pyrrhus

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A new pre-print makes a link between Post-Concussion Syndrome and ME, among other things:

Broken Connections: The Evidence for Neuroglial Failure in ME/CFS (Renz-Polster and Bienzle, 2021)
https://osf.io/ef3n4/
by Herbert Renz-Polster, Dorothee Bienzle

Excerpt:
Renz-Polster and Bienzle 2021 said:
In spite of decades of research, the pathobiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is still poorly understood. Several pathomechanisms have been identified - including immune abnormalities, inflammatory activation, mitochondrial dysfunction, endothelial dysfunction, muscular dysfunction, cardiovascular dysfunction, and dysfunction of the autonomous nervous system. Yet, it remains unclear how these pathways are related, which of them may be upstream or downstream, and which ones may be explanatory of the symptomatology of ME/CFS (and thus possibly targets for therapeutic interventions). A similar uncertainty is currently experienced by thousands of researchers who struggle to understand Postacute Sequelae of Covid (PASC, "Long Covid"), a condition with many similarities to ME/CFS.

In this paper, we present a theoretical strategy that may help clarify the causal chain of pathophysiological events in ME/CFS. We propose to focus on the common final histological pathway of ME/CFS. I.e., we suggest to ask: Which cellular compartment may explain the pathological processes and clinical manifestations observed in ME/CFS? Any functional unit consistently identified through this search may then be a plausible candidate for further exploration.

For this "histological" approach we have compiled a list of 22 undisputed clinical and pathophysiological features of ME/CFS that need to be plausibly and most directly explained by the dysfunctional cellular unit in question. For each feature we have searched the literature for pathophysiological explanations and analyzed if they may point to the same functional cellular unit.
 

Woof!

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So now something else I know all-too-well can factor into ME/CFS.... :D With a list like this, it would probably have been a miracle if I had made it through life without it...

three concussions (including being kicked in the head by a horse rolling over my head) - check
multiple head injuries (including two weeks ago when a falling tree whacked me in the head) - check (& ouch!)
black mold exposure - check
EB Virus - check
FM (with a strong familial history) - check
multiple chemical exposure (formaldehyde - thank you, medical school - and 5 yrs PFOS) - check
Rocky Mountain Spotted Fever (heck, why not throw this in for fun - ugh) - check

Sigh. Happy to be alive. :lol:
 
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multiple chemical exposure (formaldehyde
don't you love it? They tried to get me to teach Human Anatomy- my senior professor saved me from that poisoning.

I also escaped several other public poisoning events everybody else I worked with got stuck having to go save birds from toxic spills.

BTW: my wonderful vet in my home town- developed a very serious illness from something he caught from large animals, affecting his brain. It was incredibly tragic, we miss him so much.

My daughter worked at the Vet for 10 years, no large animals. I really worried much of the time....
 

Woof!

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don't you love it? They tried to get me to teach Human Anatomy- my senior professor saved me from that poisoning.
I'm so glad med & vet students nowadays have higher-tech (and non-cadaver) ways to learn anatomy. Less toxic pickle-juice, all around. I've told all my friends and family...when I die, they better not have me pickled or I'll come back and haunt them. (I've had enough formaldehyde for several lifetimes!) Just find a place where it's legal and stick me in the ground a'la naturale.

I also escaped several other public poisoning events everybody else I worked with got stuck having to go save birds from toxic spills.
Haha. That would be something I'd run towards (as opposed to away from). 'Course I'd have heavy rubber gloves up to my arm pits...