Learn how to see. Realize that everything connects to everything else.

The most difficult part of a person's medical journey may be simply making the right connections. Physicians are only able to form a diagnosis based on what information they have—be it a symptom list or test result—and may not have the ability to spend a great deal of time with each patient. 

What's more, many of the diagnostics we've come to think of as definitive are in truth more in the area of likely or unlikely. Illnesses that are identified by means of diagnosis of exclusion may not be accurate if an exclusion was made only on the basis that an excluded illness is considered rare. The issue may also be outside the physician's specialty.

The cause of many illnesses is unknown, meaning despite a firm diagnosis, the mechanism driving those symptoms may yet be discovered, or one illness may be secondary to another.

It's been estimated that over 90% of spinal CSF leaks are misdiagnosed. 

It’s hard to ignore the parallels between intracranial pressure and other illnesses, and new research proposes that ICP may be the shared pathophysiology driving symptoms in many chronic conditions. ME/CFS, fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome, temporomandibular disorders, headache disorders, chronic migraine, chronic low back pain, and other chronic pain conditions, as well as certain cognitive and movement disorders have been linked to ICP.

Studies have shown that CSF leaks can affect every cranial nerve.

The spinal CSF leak page gives insight as to how low intracranial pressure can mirror the symptom set of ME/CFS right down to PEM, and that some symptoms may only be relieved by pacing and rest (in spinal CSF leaks when staying flat allows the CSF to resume its place the brain). With high intracranial pressure, the increased pressure can force cerebrospinal fluid into nerve root sheaths, causing severe nerve pain that can be relieved somewhat by gentle upright activity, as in fibromyalgia. Inflammation could also be a factor.

If nothing else, these similarities could be causing misdiagnosis, and intracranial pressure should be considered during the diagnostic process. ICP is also considered a factor in Long Covid (Covid-19 has recently been deemed a vascular disease) and the similarities between LC and ME/CFS cannot be denied. 

Given that ME/CFS and LC are believed to have an illness onset, intracranial hypertension, venous outflow disorders, and spinal CSF leaks are often disregarded as potential contributing factors. But high ICP can be brought on by illness. And illness can damage connective tissue, or endothelial cells that line blood vessels, potentially impacting blood flow or CSF.

Some causes of increased intracranial pressure include:

• Underlying illness, such as Meningitis, Lyme disease, Coxsackie B viral encephalitis, Guillain-Barre syndrome, Infectious mononucleosis, Lupus, Sarcoidosis, Hypoparathyroidism, Addison’s disease, Behcet's disease
• Medications (this is an extensive list, but some major actors are the cyclines—doxycycline, tetracycline, minocycline—or Accutane, Retin A and topical products and face creams, prednisone which may cause temporarily improved and then severely worsening symptoms, estrogen, and more—search the medicine with “cranial pressure” to check)
• Vitamin A
• Cerebral blood clots (cerebral venous thrombosis) or other venous outflow disorders
• Infection
• High blood pressure
• Tumor
• Stroke

CSF pressure issues may also be aggravated by flow problems such as stenosis, drainage issues, or many things mechanical, and made worse by lax dura mater related to connective tissue disorders. Please check out the Spinal CSF Leaks, Intracranial Hypertension, and Compression Issues pages to learn more about how pressure can affect CNS function and create a collection of seemingly unconnected symptoms. 

If you or anyone you know is dealing with a pain or fatiguing illness that has or had a positional element, look into the research or find an experienced specialist to discuss ICP now.