Delayed diagnosis of intracranial hypotension due to spinal CSF leak remains common. Lianne suffered with debilitating daily headache for 15 years before she was correctly diagnosed and treated. Here is Lianne’s story.
In 2003, Lianne, age 50, was an active, outdoorsy woman who loved riding her bike and taking her three dogs on long walks through the picturesque landscape of her neighborhood in Humboldt County, California. Then the headache began. The doctors she visited suspected she was likely menopausal and diagnosed her with migraine headaches, although she had never experienced migraine (or menopause) symptoms before. “They told me to change my diet, give up chocolate, give up coffee, give up dairy, give up meat,” she said. So she did, giving up anything and everything that might trigger these “migraines.” Nothing helped. Except for one thing, she noticed: lying down.
But it was hard for her to lie down. “I was a very active person, really loved being outdoors,” she said. And besides, if this near-constant headache was a type of migraine, surely she should be able to manage it with medication just like other people did? Eventually, though, this headache wasn’t happening five days a month, but nearly every day, and it didn’t always respond to medication. Soon, instead of being able to ride her bike every evening or walk with her dogs or enjoy spending time with friends, she found herself in bed, lying down in an attempt to relieve the pain. Her work, too, became a challenge, as her computer analyst job required her to look at a screen for hours at a time, which only made her mysterious headache worse.
Lianne struggled with another diagnosis, in addition to these troubling headaches: Ehlers-Danlos Syndrome, the name given to a group of inherited disorders that affects connective tissue. Some people with EDS have overly flexible joints and soft, stretchy skin; others have less visible issues affecting their blood vessels, bones, and other organs and tissues. In some cases, due to the way EDS affects connective tissue, the dura mater, which covers the brain and spinal cord and holds cerebrospinal fluid in place, can be weak in spots and thus easily torn, allowing cerebrospinal fluid to leak out and causing a headache that worsens upon standing. But it would take years before those dots were connected for Lianne.
In 2012, Lianne was hit by a car while riding her bike. The accident was a serious one: she suffered broken ribs and spent months in bed, recuperating—months in which she found herself free from the persistent headaches that had haunted her for nearly ten years at that point. But once she was healed—and, crucially, back to being upright—the headache pain returned.
A few years later, Lianne joined a local EDS support group in her hometown. When she shared how debilitated and frustrated she was by her near constant head pain, one of the group members suggested she watch a YouTube video featuring a doctor talking about EDS patients who experienced daily headache due to something called a spinal CSF leak. Lianne was intrigued. She reached out to the doctor, who agreed that her symptoms were very much in line with what he normally sees in patients with spinal CSF leaks. She made the seven-hour drive to meet with him and his team for further evaluation and, for the first time, proper treatment. She experienced almost immediate relief, but after a few months, she felt the headaches creeping back, so she returned a few months later for another series of blood patches. This time, they worked.
Since then, after 15 years of suffering daily, disabling, debilitating headaches, Lianne has been headache-free. She has experienced some post-patching rebound high pressure symptoms — but no headache. “To say I’m grateful is a colossal understatement,” she posted recently to her online CSF leak support group. “I really can’t believe it worked, but it did. So far, so good.”
If you have been suffering with daily headache that tends to be better when lying flat, or simply better in the morning and worse later in the day, with poor response to medications, ask your health care provider if your headache could be due to a spinal CSF leak.
#leakweek #becauseyourduramaters #spinalCSFleak