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When My Pain Turned Out to Be More Than a Headache

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It was 3:00 a.m. on March 19th, 2016 and I woke up covered in sweat…I mean covered. I am a 50-year-old woman and would normally have dismissed it as hormonal, but I have to say, I was sopping wet.

Once I got up and out of bed, I quietly snuck into the bathroom and my clothes were dripping as I wiped myself down and got changed into new pajamas. It was then that I realized a searingly painful headache had begun that I had to admit worried me a little. It was not an ache but a tremendous pain.

Had I known then it would last more than 15 months and counting…I would have paid far more attention to how it was different to any headache I had had in my life before and not thought about how it was similar.

What I Didn’t Know

What I didn’t realize for a few months was that every time I lay down, after about 30 minutes or so, the pain would get better.


What I didn’t know was that nausea, vomiting, dizziness and brain fog were indicators of a different kind of headache.

What I didn’t know was that losing my balance, forgetting my dog’s name (for a day and a half) and not being able to wear my glasses without intense pain were big signs.

What I didn’t know was that being upright was the very thing that was causing my brain more damage than the headache itself.

What I didn’t know was that every time a doctor was telling me I was the wrong age to start having migraines, they should not have been diagnosing migraine.

What I didn’t know was that this was no migraine at all. I had a spontaneous spinal CSF leak (cerebrospinal fluid leak).

What Does CSF Do?

CSF is the almost clear liquid that bathes your brain and fills your spinal column to support and protect your spinal cord and keep your brain bobbing nicely inside your skull. Imagine your spinal column and brain much like a helium balloon with a string attached. As long as you have enough helium to keep the balloon afloat, it will keep your brain upright and “full.” Once a few days go by, the helium starts to seep out and the balloon starts to sag and fall toward the ground (that’s gravity).

Well, gravity on your brain means your brain actually gets pulled down into the cavity at the base of your skull and you are, in fact, rubbing your brain on bone. Needless to say, that isn’t a good thing.

Upright Headache

This type of headache is often called an upright headache as the pain can subside with lying down (also called positional headache or orthostatic headache). It makes sense because once you lie flat the spinal fluid has a chance to flow back to the brain and gravity is no longer playing as large a part in pulling on your brain.

In my case, I had headaches all day every day if I was upright. Many of those with CSF leaks only notice symptoms after a few hours of being upright. Maybe there isn’t even that much pain, but more like foggy thinking, a difficulty piecing things together when this has not been the case prior.

Some people experience these symptoms gradually after dramatic events such as a car accident and some with everyday occurrences such as swinging a golf club, strenuous exercise or sneezing!

It wasn’t until I accidentally exacerbated my symptoms by lifting a very heavy pot in my garden and immediately laid down to alleviate the symptoms that my relative who knew about spinal CSF leaks told me to look into it.

Symptoms of CSF Leak

Once I looked at the symptoms online and did some more searching on various websites, I became convinced I was not dealing with a migraine.

Some of the symptoms include: positional headache, nausea, vomiting, impaired balance, photophobia (sensitivity to light), arm numbness, pain between the shoulder blades, neck pain, changes in hearing (ringing or muffled hearing), phonophobia (sensitivity to sound), dizziness and brain fog.

There are many other symptoms that go along with this condition and can be found on the Spinal CSF Leak Foundation website.

Convincing doctors, GPs and neurologists is a difficult prospect. Diagnosis can take months and even years if they are not familiar with the telltale signs of spinal CSF leaks.

It was a lot of work with a lot of help from others in the same boat as I was that finally got me to a correct diagnosis. None of the usual avenues panned out for me.

I did get treatment after a year in debilitating pain and will have to undergo another procedure as my symptoms have returned after two and a half months post-treatment, but I am hopeful I will be cured.

This “headache” is a treatable illness. It starts with the proper diagnosis.

I hope you will take a quick double take and look into spinal CSF leak if you have a new daily headache that just will not go away and tends to improve after resting flat – if you feel something is being missed, if you know in your gut all the pieces are just not adding up.

Your headache could have a treatable cause and I urge you to find out.

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Thinkstock photo via cyano66.

Originally published: June 8, 2017
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