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Nicole’s Journey With Spontaneous Intracranial Hypotension

On a Sunday morning, I woke up with a dull but prominent headache. It was unlike anything I’d ever felt before. It was accompanied by moderate neck pain. I took Ibuprofen and figured that would do the trick, however, I was surprised when the pain never subsided. As the day went on, the headache got increasingly worse to the point where I could only lay down to get relief and I was severely bothered by light and sound. After four days of this, I went to the ER where they treated me for a migraine. When I got home from the ER, the next morning the headache was still there. I was baffled, frustrated, and in a lot of pain.

I started feeling like this was my life now, every day a headache. After a few more days, I developed double-vision which ultimately brought me back to the ER.  I had 2 MRIs, a CT scan, and eventually a spinal tap to rule out the more serious diseases of the nervous system. The MRI showed inflammation of the meninges and pituitary gland. They kept me at the hospital and I got a chance to meet with the neurologist. He wanted to do a spinal tap to rule out more serious diseases like MS and meningitis but he was truly baffled at my symptoms, as I was able to pass all the tests and I wasn’t running a fever. It was the nature of my headache that finally brought him to the possibility of what he called Spontaneous Intracranial Hypotension (SIH) or in other words a Cerebral Spinal Leak. The main symptom of this issue is a postural or orthostatic headache – a headache that gets worse upon being upright but improves or goes away completely when laying down. In this situation basically, your brain is being deprived of the cushioning that CSF provides and sags, wreaking all kinds of havoc on the surrounding nerves. It’s also the reason why painkillers aren’t effective.

This kind of headache gets misdiagnosed and mistreated often and I just want to help bring awareness to the subject as many doctors and neurologists are unaware of this condition. I was lucky as my neurologist had seen one case before in his 29-year career and I was able to get the correct diagnosis and expedite treatment, but many are not as lucky as I was. The pain from this type of headache is debilitating, you can’t live your life lying down all the time. I want people to know there are treatment options that work for this kind of headache. I think it’s important for doctors and neurologists to consider a CSF leak when a patient exhibits these kinds of symptoms regarding a headache.

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