Best theory so far?

Bowser

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I think we're certainly dealing with a group of different disorders with similar symptoms. The current theory which I'm investigating for myself is as follows. I believe it affects some unknown percentage of CFS/ME patients.

CFS/ME for me is caused my IIH (idiopathic intracranial hypertension). This is increased pressure in the brain. The empty sella on my brain MRI is the first line of evidence.

"Idiopathic" just means the cause is unknown, not that no cause exists. IH is also alternatively called cerebrovascular hypertension (CVH), or the oversaturation of brain with blood. This has a number of potential causes:

Causes of IH:

1. Stenosis (narrowing) of the transverse sinus veins and/or the jugular veins, which drain blood from the brain.

2. TOS-CVH (Thoracic Outlet Syndrome - CVH) -- narrowing of the thoracic outlet below the collarbone and above the first rib. Potentially caused by very weak scalene muscles in the neck, which can be strength tested at home.

TOS-CVH causes blood which is supposed to go to the arm to be redirected to the brain, causing IH.

3. CCI/AAI - This is the one I know least about as I don't know how IH is related to this. But empty sella seems to be common in CCI/AAI patients.

Respective treatments:

1. Depends on what causes the stenosis. Various solutions are balloon venoplasty, stenting, transversectomy, styloidectomy, etc.

2. Conservative treatment by strengthening of the scalene muscle at home using exercises OR a scalenectomy, a surgical cutting of the scalene muscle.

3. Possibly fusion of C0-C2, but I don't know enough about this.

-------------

When it comes to me, I definitely don't have CCI/AAI, but I do definitely have TOS-CVH. I am trying to treat this conservatively at home, but it is proving difficult and painful. I am considering a scalenectomy.

Transverse sinus vein stenosis may also play a role in my case. I have to get that checked out this year with a catheter venography and manometry.
 

Learner1

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Dear PR

What theory/what model describes our illness the best so far? There are so many theories out there, and as I am not as knowledgeable as most of you are, I would like to know your thoughts on it.

Many thanks in advance!
We each have different genetics and different environmental factors driving it.

For many, one or more viruses:
  • Put a load on the immune system rendering some patients immunodeficient, and others unable to effectively fight them
  • Fragment mitochondria
  • Cause oxidative and nitrosative stress damaging mitochondrial membranes, making them leaky and less able to efficiently make ATP
  • Deplete nutrients
  • Deplete collagen due to nutrient deficiencies, leading to pinched nerves in spine
  • Increase stress on adrenals causing high cortisol production or depletion of cortisol
  • Trigger multiple forms of autoimmunity
  • Deplete catecholamines
  • Cause hypercoagulation
This is why one magic pill won't solve this.
 

Bergkamp

Senior Member
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I think we're certainly dealing with a group of different disorders with similar symptoms. The current theory which I'm investigating for myself is as follows. I believe it affects some unknown percentage of CFS/ME patients.

CFS/ME for me is caused my IIH (idiopathic intracranial hypertension). This is increased pressure in the brain. The empty sella on my brain MRI is the first line of evidence.

"Idiopathic" just means the cause is unknown, not that no cause exists. IH is also alternatively called cerebrovascular hypertension (CVH), or the oversaturation of brain with blood. This has a number of potential causes:

Causes of IH:

1. Stenosis (narrowing) of the transverse sinus veins and/or the jugular veins, which drain blood from the brain.

2. TOS-CVH (Thoracic Outlet Syndrome - CVH) -- narrowing of the thoracic outlet below the collarbone and above the first rib. Potentially caused by very weak scalene muscles in the neck, which can be strength tested at home.

TOS-CVH causes blood which is supposed to go to the arm to be redirected to the brain, causing IH.

3. CCI/AAI - This is the one I know least about as I don't know how IH is related to this. But empty sella seems to be common in CCI/AAI patients.

Respective treatments:

1. Depends on what causes the stenosis. Various solutions are balloon venoplasty, stenting, transversectomy, styloidectomy, etc.

2. Conservative treatment by strengthening of the scalene muscle at home using exercises OR a scalenectomy, a surgical cutting of the scalene muscle.

3. Possibly fusion of C0-C2, but I don't know enough about this.

-------------

When it comes to me, I definitely don't have CCI/AAI, but I do definitely have TOS-CVH. I am trying to treat this conservatively at home, but it is proving difficult and painful. I am considering a scalenectomy.

Transverse sinus vein stenosis may also play a role in my case. I have to get that checked out this year with a catheter venography and manometry.
May I ask what led you to this explanation? Was it the symptoms you have, and if yes, which symptoms? Is there any evidence other than the empty sella that points in this direction?

Just asking because I suspect this could also play a role in my situation but I've never actually explored this avenue.
 
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I feel this - intense pressure in the brain and eyes yet I don't hardly ever get headaches...(get the inflammed dull base of the skull ...discomfort. I don't take pain killers for it.

Tried to get IH evaluated at the eye doctor. That failed, I was dismissed without any testing or discussion even.

if yes, which symptoms?
yes good question...
 
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Sinuses yes (swollen, dry)(pinched clothes pin feeling often arrives daily in the late afternoon)
Mouth yes: palette, teeth, tongue throat lips swell at nite often/angiodema probably.

lite intolerance- some- my eyes are squeezed, often pouring, other times dried out, likely have Sjorgrnes but a lot of visual acuity loss suggests biotoxins on my optic nerves....I don 't get far on detox, keep trying....

During acute PEM, developed unable to process visual imputs- this has improved since that mess.

The glare from the window is bothering me right now.
 

Dakota15

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In Komaroff's recent words:

"ME/CFS often follows an infection illness of some-sort. It's very similar to what's seen in long COVID. What causes this? That's the big question. The big answer is, we don't know yet.

But, we do have theories, theories based on pretty substantial evidence.

I think most people in this field think that both ME/CFS & long COVID, the symptoms are caused primarily by brain abnormalities, that include an activation of the immune system in the brain, or neuroinflammation; auto-antibodies or an autoimmune disease that causes auto-antibodies that attack targets in the brain; decreased blood flow to the brain caused by abnormalities of the nervous system; and finally an abnormality in the failure of cells in the brain to produce enough energy molecules to meet the needs of the brain. All of these have been documented in ME/CFS & likely to apply in long COVID as well."


("Learning from the Past: The Long-Term Consequences of COVID-19 with Dr. Anthony Komaroff")
 

Bergkamp

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Sinuses yes (swollen, dry)(pinched clothes pin feeling often arrives daily in the late afternoon)
Mouth yes: palette, teeth, tongue throat lips swell at nite often/angiodema probably.

lite intolerance- some- my eyes are squeezed, often pouring, other times dried out, likely have Sjorgrnes but a lot of visual acuity loss suggests biotoxins on my optic nerves....I don 't get far on detox, keep trying....

During acute PEM, developed unable to process visual imputs- this has improved since that mess.

The glare from the window is bothering me right now.
That's interesting. I have a very similar representation. Especially the eyes - my eyes fluctuate between severe dryness and excessive tear production as well. Going to explore the IIH, intracranial pressure, CCI avenues in the coming months I think