Are some chronic migraines linked to a spinal fluid leak?
I had my first migraine when I was 17, and it was a classic migraine with aura--a spreading shimmering circle appeared in my field of vision, followed by intense pain, nausea, light and sound sensitivity, and the rest. For the next several years, I had episodic migraines, sometime with aura and sometimes without. My primary care physician prescribed Midrin, which worked pretty well for me. The migraines were annoying, and would knock me out of commission for a while, but since I only had a few each month I dealt with it pretty well.
After 7 or 8 years, the migraines started becoming more frequent and more debilitating. I tried Topamax as the first in a long line of preventatives, none of which did much good. I ran through all of the triptans, with their side-effects often harder to deal with than the headeaches themselves. I had my first MRI, which was read as normal. Things kept getting worse.
As time went by, I slowly transitioned from episodic to chronic, and finally to constant daily migraines. As I write this, I'm in year 4 of a constant headache that has been gradually getting more severe since it started. New symptoms have popped up along the way, including constant tinnitus, increased heart rate, fatigue, frequent brain fog, and others I'm sure many of you are familiar with. My life has been reduced to work, pain, and sleep.
In an effort to get at least some of my life back, I participated in an in-patient pain management program, which was focused on an interdisciplinary approach, including medical, psychological, and behavioral methods for living with chronic pain conditions. One of my doctors, Dr. Ian Carroll, read through my history, asked me some questions, and then told me he suspects I might have a spinal fluid leak, a fixable problem that could be contributing to many of my symptoms.
According to Dr. Carroll, spinal fluid leaks can be misdiagnosed as conditions like POTS, fibromyalgia, and chronic migraine, and people can suffer for years without knowing the cause of their issues. In the lecture linked below, he explains the condition, the symptoms it can cause, and ways to diagnose and treat spinal fluid leaks. I'm sharing it here in the hope that other suffers might recognize their own symptoms and seek help.
If you or someone you know has headaches and/or migraines that are positional (worse when upright than when lying down) and worse at the end of the day, please watch the lecture to see if this might be worth persuing. If this link gets to even one person that could be helped, I'll be happy. As for me, step one is an MRI on my brain and spine, and hopefully I'll be one step closer to getting my life back.
http://healthlibrary.stanford.edu/lectures/2016.html
Community Poll
Do you feel comfortable advocating for yourself to your healthcare provider?
Join the conversation