In recently talking with Dr. Deborah Friedman, a talented neuro-ophthalmologist with UT Southwestern Medical Center in Dallas, Texas, I learned there are several conditions seen in headache medicine that are greatly underrepresented in the media. Friedman agreed that the general public could benefit by learning more about these.
There are patients who experience continuous pain on one side of their head, experiencing a condition known as “Hemicrania Continua.”
Friedman said in those cases, “the headache is always there.” She said “when it worsens, it frequently sounds like migraine” and it can be easy for even a practitioner to “forget to ask if [the patient] is ever headache-free.” The headache pain can fluctuate, but it is always present.
When properly diagnosed, Friedman said, a positive change can occur for the patient because it “totally changes the management” of the condition.
Hemicrania Continua is “commonly treated with an old anti-inflammatory drug called indomethacin,” Friedman said. The response to indomethacin is required to make the diagnosis.
Another underdiagnosed and underrepresented condition is cluster headaches.
According to Friedman, cluster headache is 2.5 times more common in men than women. “It was previously taught that it was a disorder affecting middle-aged male smokers,” she said. However, while men and smokers are at increased risk, cluster headache affects a much broader range of people.
Friedman explained that “women do experience cluster headaches and they frequently get misdiagnosed.” This is for a few reasons.
First, “Women tend to get cluster headache at a young age and at an older age than men do,” said Friedman.
Second, “Women tend to have a lot of migraine features with their cluster headaches (nausea, vomiting, sensitivity to light and noise), which are not part of the criteria to diagnose a cluster headache,” she explained. While this can occur in men, it notably throws off the diagnosis for women.
Last, “Women also frequently have a prior history of migraine so they are getting two different kinds of headaches, so they are both being called migraine when one is a cluster headache.”
The third underrepresented condition in headache medicine is one that “can make people completely bed ridden,” Friedman stated.
It is “a spinal fluid leak that can cause really debilitating daily persistent headaches,” she said. It’s called a Cerebrospinal Fluid (CSF) leak. These are often daily headaches.
According to the Cerebrospinal Fluid Foundation, this is “a special fluid that bathes and supports the brain and spinal cord.”*
“When the tough layer called the dura mater that holds CSF in around the brain and spinal cord has a hole or tear along the spine, this results in a loss of CSF volume through the defect. This is called a spinal CSF leak, which is the underlying cause of intracranial hypotension.”*
CSF is diagnosed by a doctor “taking a really good history and sometimes an MRI of the brain will give [the doctor] clues.”
Specifically, Friedman said, with this condition “We are looking for headaches that are worse when the patient is upright and/or worsen as the day progresses.”
“The headaches are often associated with either ringing in the ears or dizziness, but there a lot of symptoms that occur with these headaches,” Friedman said.
Symptoms often worsen with anything that “increase[s] chest or abdominal pressure, i.e. laughing, lifting, sexual activity.”
While also a shared factor in migraine, “with CSF leaks, the worsening is very significant and pronounced.”
Friedman said, “With rare exceptions the symptoms are worse being upright and get better with lying down.” She noted that patients generally feel better within 30 minutes after lying down; some feel better more immediately.
If you are an individual who is getting recurring headaches, it is important to seek out quality care and diagnostics.
A neurologist collects a wide variety of information from a patient such as medical history, symptoms, lifestyle, and more, when determining the exact type of headache you are experiencing. Only when the right diagnosis is made can the improvement in your condition begin.
*Source: Spinal CSF Leak Foundation, https://spinalcsfleak.org/
Dr. Deborah I. Friedman is a neuro-ophthalmologist at UT Southwestern Medical Center. Dr. Friedman is the founding Director of UT Southwestern’s Headache and Facial Pain Program. She is a Fellow of the American Academy of Neurology, the American Headache Society, and the North American Neuro-Ophthalmology Society.
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