New Type of Chronic Daily Headache

New Type of Chronic Daily Headache Described in Case Series – MPR – Diana Ernst, RPh – September 26, 2017

A case series published in the Journal of Women’s Health describes a new subtype of chronic daily headache that appears to be associated with elevated cerebrospinal fluid (CSF) pressure.

The eight women included in this review

  • were older (average age of onset: 57 years),
  • were mostly overweight or obese (6 out of 8), had a
  • history of episodic migraine (migraines were well-controlled or had ceased prior to new headache onset), and
  • were either perimenopausal or in menopause.  The new headache was characterized by daily bilateral head pain which was most severe first thing in the morning or when in supine position.

Sporadically since 1997, I wake up with this type of headache in the early morning hours sometime after 3am.

“Immediate worsening in Trendelenburg [In the Trendelenburg position, the body is laid supine, or flat on the back with the feet higher than the head by 15-30 degrees.] appears to be an almost diagnostic test for the syndrome and occurred in all patients,” noted author Todd D. Rozen, MD from the Mayo Clinic in Jacksonville, Florida.

This became my own diagnostic: while lying down my headache was excruciating, but while upright (sitting or standing) the pain was merely horrible.

I have to take more than one of my breakthrough pain medications and once when I called my doctor, he said I could even take another one.

For me, opioids take 1 to 2 hours or more to become effective, so I spend those desperate hours in a reclining chair. I adjust it so my upper body is almost erect and I can very lightly lean my head against the headrest. Any pressure against my head increases the pain dramatically.

Neuroimaging was conducted but showed no abnormalities.

With regards to treatment, all of the patients responded to CSF pressure-/volume-lowering therapies (ie, acetazolamide or spironolactone), however only one patient was able to taper off treatment completely without having headaches again.

“It is hypothesized that a combination of an elevated BMI and the presence of cerebral venous insufficiency leads to this form of daily headache,” Dr. Rozen concluded.

Everything I read about high CSF pressure headaches says patients have an elevated BMI, but mine is on the low side. This made me believe my hunch was incorrect and that it must be a different problem, perhaps a cervicocranial headache:

from Wikipedia:
Cervicocranial syndrome (or craniocervical syndrome) is a combination of symptoms that are believed to be caused by an abnormality in the neck. Symptoms often include vertigo, chronic headache, tinnitus, facial pain, ear pain, dysphagiaand pain at the carotid artery. It is usually caused by spondylosis.
Spondylosisis a broad term meaning degeneration of the spinal column from any cause.
Spondylosis is caused from years of constant abnormal pressure, from joint subluxation, sports, or poor posture, being placed on the vertebrae, and the discs between them. The abnormal stress causes the body to form new bone in order to compensate for the new weight distribution.
This abnormal weight bearing from bone displacement will cause spondylosis to occur.

However, I believe that upright/lying down pain changes indicate a problem with CSF pressure. I’ve had a terrible headache from low CSF pressure after an epidural, which was fixed with a “blood patch”, The headaches I have now feel similar.

The pain is intense, steady (non-pulsating), and impervious to changes in head position. Noteworthy is that the pain is always bi-lateral, equally on both sides. It seems to swoop up from the back of my head, over the top, and down into my forehead.

I can see how instability in the cervical spine (from slippage of vertebrae or disks allowed by ligaments lax from EDS) could result in “pinching” the dura  (a thick membrane that is the outermost of the three layers of the meninges that surround the brain and spinal cord).

This would then cause a disruption in the circulation of the cerebrospinal fluid (CSF) and leading to painful pressure gradients.


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