The headache you’ve never heard about
By Dr. Caroline Creager, PT, DPT
Headaches are a problem no matter when or where they occur. During this time of year many of us experience allergy headaches in addition to several other kinds of headaches.
June is the National Migraine and Headache Month, and the first full week of June was National CSF Leak Awareness week. CSF is an abbreviation for Cerebrospinal Fluid (CSF), making it understandable that it is much easier to refer to this disorder as a CSF leak. Intracranial hypotension is the medical term for a cerebrospinal fluid leak.
The cerebrospinal fluid is the fluid that typically cushions the brain and the spine. In a marvelous design there is a fragile membrane (the dura mater) that forms a barrier around the fluid to keep it contained and able to do its job of keeping the brain and spine comfortably and safely supported.
Sometimes the membrane – the dura – is damaged and is no longer able to perform its protective job. If there is a hole or a rip in that dura, then cerebrospinal fluid leaks out of where it belongs.
Sometimes the damage to the dura is the result of an accident, surgery or a head injury. At other times there is no evident cause of the leak, which is termed a spontaneous CSF leak. Spontaneous leaks are more common in individuals who have a connective tissue disorder such as Ehlers-Danlos syndrome.
One of the most common symptoms of a CSF leak is what is called an “upright headache.” This just means the headache usually is much worse when standing or sitting and seems to lessen and get better when the headache sufferer is lying flat. That is because there isn’t the normal amount of fluid to help the brain float as it should.
In addition to an upright headache, the Spinal CSF Leak Foundation reports the following common symptoms: nausea and vomiting, neck pain or stiffness, change in hearing (muffled, underwater, tinnitus), sense of imbalance, sensitivity to light or sound, pain between shoulder blades, pain or numbness of arms, brain fog, dizziness or vertigo, and visual changes.
This upright headache and its improvement upon lying down closely resemble the symptoms of a migraine and can easily be misdiagnosed or completely dismissed. While a CSF leak is rarely life-threatening, it can certainly become disabling and can cause a major disruption in someone’s life, causing the person to spend more time lying down than standing up or performing otherwise enjoyable and normal activities of daily living.
The positive side of CSF leaks is that most leaks can be tracked down to a particular cause when diagnosed timely and properly, and can often be repaired, whereas many other types of headaches must simply be endured.
The first step is diagnosis, to determine whether the CSF leak is in the spine or the skull. After making that determination a doctor will advise the patient on the best “fix” or “repair” for the dura (the protective covering holding the spinal fluid).
There are many different approaches for the several different types of damage to the dura. Sometimes conservative treatment is suggested when the CSF leak is first diagnosed. Conservative treatment can consist of lying flat for 48 hours and increasing fluid and caffeine intake. If conservative treatment is unsuccessful, an epidural blood patch is often performed. The patient’s own blood is injected back into the epidural space near the site of the damaged area of the dura, hence the name epidural blood patch. At other times, surgical intervention may be required, and the approach is individualized based on location (spinal or cranial) and type of leak.
The most important thing to consider when thinking about the possibility of a positional headache or CSF leak is to get professional guidance and diagnosis. Dr. Caroline C. Creager, DPT, specializes in recognizing CSF leaks, medical management, and guiding her patients toward a diagnosis and ultimately returning to a more active lifestyle. Creager has helped many Berthoud residents obtain a CSF leak diagnosis and treatment.
Creager and some of her patients recently celebrated CSF Leak Week as seen in photo.
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