• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Borderline Intracranial Hypertension Manifesting as CFS

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I've seen some threads on Intracranial Hypertension but couldn't find this one:
Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting

Nicholas Higgins1, John Pickard2, Andrew Lever3

Abstract

Chronic fatigue syndrome and cases of idiopathic intracranial hypertension without signs of raised intracranial pressure can be impossible to distinguish without direct measurement of intracranial pressure. Moreover, lumbar puncture, the usual method of measuring intracranial pressure, can produce a similar respite from symptoms in patients with chronic fatigue as it does in idiopathic intracranial hypertension. This suggests a connection between them, with chronic fatigue syndrome representing a forme fruste variant of idiopathic intracranial hypertension. If this were the case, then treatments available for idiopathic intracranial hypertension might be appropriate for chronic fatigue. We describe a 49-year-old woman with a long and debilitating history of chronic fatigue syndrome who was targeted for investigation of intracranial pressure because of headache, then diagnosed with borderline idiopathic intracranial hypertension after lumbar puncture and cerebrospinal fluid drainage. Further investigation showed narrowings at the anterior ends of the transverse sinuses, typical of those seen in idiopathic intracranial hypertension and associated with pressure gradients. Stenting of both transverse sinuses brought about a life-changing remission of symptoms with no regression in 2 years of follow-up. This result invites study of an alternative approach to the investigation and management of chronic fatigue.
Full text here.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
So interesting.

They looked at patients with "chronic fatigue" and headaches and found:

"Most of the patients we have investigated in this way have had intracranial pressures that fail to make the cut-off for IIH, but a number have been borderline and in some the intracranial hypertension has been unequivocal.[10] Regardless of the absolute value of the CSF pressure, however, we have found that most respond clinically to CSF withdrawal,[11] [12] an observation suggesting that a disturbance of intracranial pressure is a critical component of their clinical condition."

So far it seems like they have stented one patient.

"it is notable that the relief of symptoms after stenting was profound, yet there was only a minimal reduction in CSF pressure at follow-up."

"The unequivocally favorable outcome suggests that this is an area ripe for further study."

Go for it!
 

L'engle

moogle
Messages
3,200
Location
Canada
September of this year, out of Addenbrooks in Cambridge. I thought they were distancing themselves from CFS? (from another thread)
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Interesting .
I found when my sinusitis would get bad my bp would go up eg 160/110 as well as intense frontal headaches and once on abx for a few days this would return back to normal .

Beginning of this year after shingles on side of my head my bp was 190 / 120 . I was then place on anti hypertensive meds . Recently read that one month after shingles there is an increased risk of strokes , which can correlate with high bp.

I wonder if high bp and intercranial pressure is somehow related to infections and possible scare tissue to structures in the brain like blood vessels etc???????

I think something also related is those who have hypertensive orthostatic intolerance ?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Interesting .
I found when my sinusitis would get bad my bp would go up eg 160/110 as well as intense frontal headaches and once on abx for a few days this would return back to normal .

Beginning of this year after shingles on side of my head my bp was 190 / 120 . I was then place on anti hypertensive meds . Recently read that one month after shingles there is an increased risk of strokes , which can correlate with high bp.

I wonder if high bp and intercranial pressure is somehow related to infections and possible scare tissue to structures in the brain like blood vessels etc???????

I think something also related is those who have hypertensive orthostatic intolerance ?
Is intracranial hypertension reflected in hypertension in the body? There are numerous types of hypertension, and some appear to be limited to particular parts of the body (or head/brain in this case).
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Is intracranial hypertension reflected in hypertension in the body? There are numerous types of hypertension, and some appear to be limited to particular parts of the body (or head/brain in this case).


Intercranial pressure is more specific to the brain i guess . Many things that can cause hypertension but with intercranial pressure, blood pressure can increase and can be a sign.

I know in acute head injuries blood pressure increase is one sign of raised intercranial pressure.
 

L'engle

moogle
Messages
3,200
Location
Canada
Does anyone know of any other ME patients who have felt dramatically better after a lumbar puncture? Many people have had them to rule out MS etc.
 

Forbin

Senior Member
Messages
966
I doubt you would notice much if any improvement from a typical spinal tap, even if inter-cranial pressure were an issue.

The turnover of spinal fluid is actually pretty rapid. The average person has about 150 ml of CSF at any one time, but the body produced about 20-30 ml an hour. That's more than is usually taken in a spinal tap, so the shortfall would be replaced in less than an hour.

If there were improvement from a spinal tap it seems likely that it would be pretty brief. Continuously regulating pressure via a stent would be another matter.

I had a spinal tap about 2 months after onset and noticed no effect on my symptoms afterward.

[When my doctor did the spinal tap, he told me that, in the past, doctors used to drain all the spinal fluid. He chuckled and called that "barbaric."]
 
Last edited:

L'engle

moogle
Messages
3,200
Location
Canada
@Forbin In the article the patient in question was said to have a remission lasting 4 days after the lumbar puncture. That's all I'm going on. thanks for your info!
 

Forbin

Senior Member
Messages
966
Thanks @L'engle. I should have read the article more carefully.

In several places, I've seen it said that the CSF should be replaced in about an hour. On the other hand, I've found others that recommend drinking additional fluids for 24 hours to help replace what was lost.

I guess it's possible that this patient just took longer to return to her previous pressure - perhaps because it was slightly high (20 cm of H20 versus 18 cm [the high end of normal]). Or maybe the effects of the elevated pressure are somehow delayed.

As I mentioned, I personally had no benefit from lumbar puncture, but, unlike this patient, I did not have bad headaches at the time (although I would develop them a few months later).
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I wonder if some cases of low blood volume seen in PWME are an attempt by the body to prevent a further rise in intracranial pressure.

I think the tachycardia some get is a compensation for low blood pressure.
Cfsme seems to be a mixed bag with orthostatic issue being hyper or hypotensive ?
 

pattismith

Senior Member
Messages
3,932
two interesting papers about intracranial hypertension:

-association with thyroid dysfunction:

Idiopathic intracranial hypertension (IIH) is a central nervous system disorder characterized by raised intracranial pressure with normal cerebrospinal fluid composition and absence of any structural anomaly on neuroimaging. Among all endocrine disorders associated with the development of IIH, the association of hyperthyroidism and IIH is very rare with few cases reported till date. Thyroid disturbances have a unique association with IIH. Hypo- and hyper-thyroidism have been reported in association with this disorder. We present a rare case of a 25-year-old man with Graves' disease with intractable headache that was later investigated and attributed to development of IIH.

-association with mandibular compression on jugular vein:

Idiopathic intracranial hypertension eliminated by counterclockwise maxillomandibular advancement: a case report

2016 Abstract
Introduction: Obstructive sleep apnea (OSA) is a secondary cause of intracranial hypertension (IH). Decreased jugular venous drainage has been seen in patients with idiopathic IH.

Clinical Presentation: A complex case of a 48-year-old female whose idiopathic IH was put into remission after counterclockwise maxillomandibular advancement (CC-MMA), despite persistence of her OSA.

Conclusion: This case highlights the relationship between OSA and IH and points to the significant morbidity that can result from mild OSA and from what are considered borderline intracranial pressures. This indicates the need for a high index of suspicion for actual underlying pathology that can be surgically corrected when patients manifest symptoms of a somatic syndrome. This is the first report in the medical literature of clinical elimination of IH by CC-MMA. The authors propose that this positive outcome was effected via mandibular advancement producing a decrease in jugular venous resistance, allowing improved absorption of cerebrospinal fluid.