Melissa's Story
Even as s a child, I was unable to sit idle for long, always thinking, doing, or making, then crashing into bed at the end of a long day. No matter the fatigue, I pushed through. Through the years, intermittent episodes of flu-like symptoms were followed by bone and muscle pain, and I was handed random and vague diagnoses frequently. The flu-like symptoms eventually ceased, but episodes of debilitating neck and back pain, fatigue, and brain fog continued over the years, all of which worsened with anything but gentle activity. Doctors were dismissive, often commenting that I was too young or healthy to have such issues.
I was young. And I was fit. Between the episodes of illness, I even felt healthy. So, I continued to push through. I had no idea those seemingly unconnected symptoms and the restless drive to stay active were actually signs of high intracranial pressure and associated venous compression. I trusted the constant advice to keep moving, to tough it out. In 2019, I jumped down from the bed of my truck after loading folding chairs for an event. A strange jarring sensation went through my spine, but it was nothing that felt serious.
By the next afternoon, I couldn’t remember what I did for a living. When asked, the information and even the ability to communicate my own confusion about it vanished as I stood staring at a new acquaintance. It was only a blip, minutes long, but that evening, new physical symptoms began to appear.
As I write this, the connection to a spinal injury from the jump seems obvious. But who knew about spinal CSF leaks? Not me. Not my doctors. So, what followed was a torturous succession of appointments and specialists, tests and misdiagnoses, prescriptions for medications that never had a chance to work. Tickborne illness. Narcolepsy. Postural Orthostatic Tachycardia Syndrome. The list went on. The last doctor I saw before finding my cure said grimly, “this looks like ME/CFS, we don’t want to see you back.” I asked about who might help me and was told there was no one. I was on my own.
I was only mildly aware of cranial pressure (IH and CSF leaks), connective tissue disorders, and the entire world of radiology by the time my journey had reached that point, but I had been following chronic illness research at the Health Rising blog since the onset of my more serious symptoms. It was with a brutal preciseness that I understood what his statement meant.
It turned out I was not on my own, because the resources at Health Rising and the many patients sharing their stories online, screaming to be heard, led me to eventually discover the underlying cause of my illness. I had several large spinal CSF leaks in my lower lumbar area. I was patched. I recovered and am managing my underlying intracranial hypertension well. I've come to suspect that a fall down stairs a year earlier created the weak spot that would eventually become my leak, aggravated by high pressure events such as illness, activity, and antibiotic use. After three and a half years barely functioning and a year bedbound, I’m determined to share as widely as possible in the hopes of preventing the same thing happening to others.
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