CSF Disorders

Some headaches occur - not just because of genetics, hormones or triggers - but due to other problems with the brain.  We call these “secondary headaches” because there is a “secondary cause” that explains why the headaches are occurring.  One class of secondary headaches are caused by disorders of the cerebrospinal fluid, or CSF.

What the CSF Does

Your brain and spinal cord are bathed in a fluid.  This helps with certain brain and nerve functions, and can help cushion the nervous system to protect it from injuries. The CSF is constantly made and absorbed by areas of the brain, and changes in the fluid - from the amount of cells found there, to the protein and glucose levels - can be signs of serious disease.  If the homeostasis of the CSF is interrupted, there can be significant problems throughout the nervous system.

One function of the CSF is to allow the brain to float in the skull.  If the pressure of the CSF is too high or too low, you could end up with serious complications.  One of the first symptoms of a CSF problem is a positional headache. 

Headache That Changes in Position

Classically, people with low CSF volume feel no headache lying down, and have a severe headache when they sit or stand up.  The opposite is true if the CSF volume is high - your headache feels worse after you’ve been lying down and improves when you are upright.  Positional changes with your headache are considered a red flag, and you should let your doctor know if this is a feature of your headaches. 

CSF Leak

The most common cause of low spinal fluid pressure is a leak of the CSF.  This most commonly occurs after a procedure where a needle is placed into the back and the area where the spinal fluid is kept, called the dura, does not heal immediately (such as after epidural anesthesia or a lumbar puncture).  It is also possible that a CSF leak can occur spontaneously, and it can sometimes be very difficult to determine if your headache is truly due to CSF leak. An untreated CSF leak, in the most severe cases, can lead to cognitive changes of the brain, and rarely, to subdural bleeds over the surface of the brain. 

A CSF leak is typically treated with a procedure called a blood patch.  Your own blood is used to seal the area where the leak is thought to occur.  This is because blood has the ability to clot, and it can help clot the area of a spinal fluid leak.  Sometimes multiple blood patches are necessary to fully seal the leak.  

IIH - High Spinal Fluid Pressure

Spinal fluid can be elevated as well, this is most commonly seen in a condition called IIH - or idiopathic intracranial hypertension.  Some conditions that predispose to IIIH are obesity and migraine, and it is thought to at least be partially genetic.  Some common IIH symptoms include blurred vision that lasts seconds (transient visual obscurations) and a whooshing or heartbeat sound in the ears (pulsatile tinnitus).  

IIH may need to be diagnosed with a lumbar puncture to measure the spinal fluid - and this may even help lower the spinal fluid pressure quickly.  If you have IIH you need to closely monitor your peripheral vision, as high pressure behind the eyes (papilledema) can lead to peripheral vision loss.  

IIH is typically treated with medications that lower spinal fluid pressure.  The most common medications that do this are acetazolamide and topiramate. Other medications used are diuretics, and if your headache has features of migraine your doctor may also recommend migraine preventive and acute medications.  If it is difficult to lower your pressure with medications alone, it may be necessary to repeat lumbar punctures at a regular interval.  Weight loss is also recommended, and this may be an indication to consider bariatric surgery in some cases.

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