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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • Anne
    3 years ago

    i hope that is the answer for you! I know my migraines evolved from episodic to chronic and back to episodic. When you’re in the middle at it, you try anything and everything hoping for the answer. I found a great neurologist who specializes in headaches – also is on faculty at UCLA. He has me on a preventative of blood pressure medication. I take relpax for the pain. It is helping and I’m down to one to two a week.

  • Dianewht
    3 years ago

    How did they diagnose this & how did you get them to listen?? I have suffered episodes of migraines since 1994, when I suffered a spinal cord leak during my daughters birth. It happened again in 2010, during a hysterectomy. I was always told that there wouldn’t be after effects, but the migraines have continued about 1-2 each month. Fast forward to 9/2015, when I hit my head at work….after enduring two hospital stays for post concussive disorder, the workers comp Doctor released me when I went 30 days headache free. Big mistake! I have now had a constant migraine for 3 months….unbearable pain, neck stiffness, light/sound amplification, vertigo, nausea, confusion….the list is long! I sought treatment from a neurologist who does monthly Trigger point injections (relief until feeling comes back) and Topomax. I’ve been to ER about 2 times per week for 2-3 months, where the give me the standard cocktail, treat me like garbage, then dope me up and send me home. CT scan normal.

    Today, we tried an IV Keppra infusion (supposed to be for 5 days). Immediately starting nausea & visiting and headache re

  • ktsf author
    3 years ago

    So sorry to hear you’re going through this, Dianewht, it sounds awful. I haven’t officially been diagnosed with a spinal fluid leak, but according to the Stanford docs and everything I’ve read on the subject, it fits my issues really well.

    I got really lucky in that I’m a patient at the Stanford headache and pain management clinics, and Dr. Carroll is actively looking for people whose symptoms might indicate a leak. Some of the clues that tipped him off are the constant ringing in my ears, worse pain when upright or bending over and less pain when laying down, neck and spine pain (often it feels like my spine has a migraine of it’s own), and constant throbbing and intense pressure in my head. I’ve also been taking Florinef, which helps your body hold on to salt and fluid better and is thought to make it easier to replace the leaking spinal fluid, and my symptoms have improved somewhat (and get worse again if I miss a dose).

    I’m more flexible than most and bruise easily, which point to connective tissue weirdness and suggest I might be more susceptible to tears in the dura that surrounds the brian and spinal chord. As soon as my annoying insurance approves it, I’ll get an MRI of my brain and full spine to see if there are any indicators of a leak. It sounds like a leak itself wouldn’t be visible by MRI, but changes to the brain and spinal chord that result from the leak are sometimes visible if the doctors know what to look for.

    If you haven’t already, I encourage you to watch Dr. Carroll’s lecture if you feel well enough. I think he gives out his email address at the end–I don’t know where you’re located, but you might be able to get a recommendation for a doctor closer to you that’s familiar with chronic leaks. If nothing else, do some research on your own–I learned a lot from googling “spinal fluid leak” and “intracranial hypotension,” and maybe if you bring some concrete information to your current doctors they will listen.

    I know how frustrating it can be to have such odd symptoms that nobody understands, or even to have people wonder if they’re real, so I hope you get some answers. For the last couple of years I’ve been convinced that something changed, that it’s more than worsening chronic migraines, that there’s something broken that needs to be fixed. I’ve gotten really tired of the usual migraine advice, like eat well and exercise and sleep enough and drink enough water. That is all great advice, don’t get me wrong, but when walking up a flight of stairs makes it feel like your brain is going to explode out of your eye sockets, and sitting on the couch is too difficult because it hurts too much to sit up, exercise and diet aren’t gonna cut it.

    One thing I’ve figured out over the last couple of weeks is that laying flat for 20 minutes or so when the pressure starts to build can help keep the pain more manageable. I’ve become good friends with the couch in my office’s wellness room, and I’ve been able to be productive later in the day when I take a horizontal break after lunch.

    Best of luck, I hope you figure this out!

  • Dianewht
    3 years ago

    Reached a 10. Discontinued Keppra, went to ER where they called my neurologist–his response was to give my Tylenol & send me home. Sent me into panic attack. Thankfully, ER doc treated with Ativan, Haldol, Decadon, & Benadryl. Knocked me out, but still sitting here with ice packs in a dark room.

    I’m completely spent. Usually I’m a pretty positive person, but I can’t take this. I cry all the time & fight anxiety daily because I believe it will never end.

    How do I get there? What am I doing wrong? Why do these docs think I’m wasting their time? Starting to lose my marbles here!

  • Joanna Bodner moderator
    3 years ago

    I am so sorry to hear the pain that you have been experiencing for the past three months. You have been through so much over the years and to not be receiving care you are comfortable & satisfied with is very discouraging to hear. Have you considered finding an expert who specializes in migraine and headache disorders? These doctors are different from general neurologists (who may claim to be a headache expert but truly aren’t) because they are board certified in headache medicine. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions. Migraine and headache experts treat one disease all day, every day – migraine and headache. Here is information on how these doctors are so different- https://migraine.com/blog/how-are-migraine-specialists-different/ and how to find one – https://migraine.com/blog/really-find-headache-specialist/.

    Please know that we are here to support you & are thinking of you. I truly hope you begin to experience some relief and good care soon.

    Thanks for being part of our community.
    Warmly,
    Joanna (Migraine.com Team)

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