Earlier this week, I returned from Denver. I was there for a consultation with Dr. Andrew Callen, neuroradiologist and director of the CSF Leak Program at UCHealth University of Colorado Hospital. I realized on the trip that I was long overdue for a blog post. It's been 9 whole months since the last update, and I guess I've been putting it off waiting for some incredible breakthrough to report. Have I learned nothing?
When I started writing this blog in 2013, it was intended as a way of updating friends and family about the treatments I was pursuing for the post-traumatic headache I had sustained a year and a half prior. The headache I was taking a "temporary" leave of absence from my job to tackle head on (pun intended).
Next week marks 12 years. My headache is a fucking preteen. I can hardly stop long enough to let that sink in. Mostly because I can't afford to let it bring me down. My physical pain has got that one covered.
The last six months have been hard. Really, really hard. Pain levels spike but don't come down. Baseline "norms'' are recalibrated and the cycle continues. There have been many nights this year where I've laid in bed, numb with ice packs from the base of my skull to my eye sockets, contemplating a trip to the ER before inevitably deciding I can't possibly sit in a waiting room for who knows how many hours only to be given an infusion that does. not. help. I'm honestly not sure which is worse: falling asleep to the feeling of a drill going through my temples or waking up the next morning enveloped in the same agony. Agony that is entirely consuming of my life yet equally invisible to the world around me.
A few months back, I was listening to this podcast discussion about the topic of "loving your body." The hosts were discussing the topic within the context of body image, but it struck a real cord with me nonetheless. Made me think about my (complex) relationship with my own body. There's this quote from Glennon Doyle. She says, "Your body is not your masterpiece - your life is…
...It is suggested to us a million times a day that our BODIES are PROJECTS. They aren’t. Our lives are. Our spirituality is. Our relationships are. Our work is. Stop spending all day obsessing, cursing, perfecting your body like it’s all you’ve got to offer the world. Your body is not your art, it’s your paintbrush. Whether your paintbrush is a tall paintbrush or a thin paintbrush or a stocky paintbrush or a scratched up paintbrush is completely irrelevant. What is relevant is that YOU HAVE A PAINTBRUSH which can be used to transfer your insides onto the canvas of your life — where others can see it and be inspired and comforted by it. Your body is not your offering. It’s just a really amazing instrument which you can use to create your offering each day. Don’t curse your paintbrush. Don’t sit in a corner wishing you had a different paintbrush. You’re wasting time. You’ve got the one you got. Be grateful, because without it you’d have nothing with which to paint your life’s work. Your life’s work is the love you give and receive — and your body is the instrument you use to accept and offer love on your soul’s behalf. It’s a system."
What a poignant perspective, right? I can almost feel myself nodding along just reading that. Except that... when you live in pain...when pain infiltrates every waking (and sleeping) moment of your existence, where does your body end and your life begin? Where does your pain end and your body begin?
It is fucking messy. And it's something that I struggle with every day. I can repeat positive mantras like "I am not my pain" all day long, but my head pain physically exists inside my skull. How do I reconcile that my own body is both the hero and the villain of the same story? That it's both capable of and responsible for defeating this thing that in so many ways, steers the ship. How do I muster the emotional, mental, and physical strength to fight something while simultaneously making peace with my own reality? I don't have the answers. But I suppose it's why I keep trying to prove to myself that this physical body I am moving through the world in is good, is able, is strong, even when (especially when) my pain is screaming otherwise. The fake-it-til-you-make-it brand of resilience, I guess.
To be totally honest, every treatment/therapy/medication that I burn through really takes a toll. An emotional rollercoaster of hope and defeat, hope and defeat. Even still, the landscape of headache medicine (especially given the 12 years I've suffered) is ever evolving, and it keeps me optimistic to learn about new developments in the treatment of this debilitating disease.
One of those treatments is psychedelics. As you may well be aware, there's been an absolute explosion of new research into a wide range of therapeutic uses for psychedelics. And chronic pain and migraine/cluster headaches have been one really interesting area of focus. You may remember reading about my ketamine infusion back in 2014 (fucking wild, by the way). But until recently, I had zero experience with microdosing.
Microdosing, by definition, is the practice of consuming very low, sub-hallucinogenic doses of a psychedelic substance. In the case of psilocybin mushrooms, that's 0.1-0.4 g. The tough thing (aside from the obvious challenge of accessibility due to the fact that they're not yet legal), is there's just a lot of trial and error involved. Strain, dosage, frequency, time of day - you know, all of the known variables we take for granted with prescription medications. So I haven't thrown in the towel yet, but I certainly haven't felt any benefit either.
If you're interested in learning more about psychedelics and chronic pain, here are a few articles to start:
Repeat Dosing of Psilocybin in Migraine Headache
Yale Research on Psychedelics Gives Hope to Headache Disorder Community
Are psychedelics the answer to chronic pain: A review of current literature
So Dr. Callen leads a collaborative team of radiologists, neurologists, and neurosurgeons to provide cutting-edge testing and treatment for those suffering from the condition. Like I mentioned, long held belief in neurology has been that a CSF leak is ruled out by a normal brain MRI. (It's the reason that it was crossed off the list for me at Mayo over a decade ago.) Only since 2014 has a type of called a CSF-venous fistula (CVF) been discovered.
To clarify, spinal CSF leaks originate from dural weakness (dura is the outermost layer of connective tissue that surrounds the brain and spinal cord) and meningeal diverticula at the surrounding nerve root sleves (which are called cerebrospinal fluid-venous fistulas, or CVFs). Located mainly located in the thoracic region, CVFs are defined as "abnormal connections between the spinal subarachnoid space and adjacent paraspinal veins that allow unregulated egress of CSF into the venous system." Cerebrospinal fluid (CSF) venous fistulas are a recently discovered and underdiagnosed cause of spontaneous spinal CSF leak, which may lead to spontaneous intracranial hypotension.
Over the last year, I've continued to show signs of complex regional pain syndrome (CRPS), which manifests through these topical skin changes. Here - I'll throw a collage in just for fun. CRPS indicates a malfunction of the central and peripheral nervous systems and in my case, we think has developed as a result of my head pain persisting for so long. How messed up is that? The more chronic a pain condition becomes, the more sensitivity becomes central. It's a cycle proven incredibly difficult to break.
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I don't experience these skin changes every time I'm in an incredibly severe head pain flare...but every time I experience skin changes I am in an incredibly severe head pain flare. It typically gets very blotchy and sometimes streaky - often concentrated at least to some extent in that spot on the left side. The skin sometimes peels and sometimes opens and just sort of feels like it's burned. So weird.
Now on to some treatment updates:
Last fall, I began seeing Dr. Rau. As member of the Spinal CSF Leak Foundation's advisory board, she's one of the few neurologists in the country really dialed in to the latest research and treatment of CSF (cerebral spinal fluid) leaks. She also just happens to be local, which has been great. While we were navigating the leak stuff, I began some other treatments with her.
After six years of fertility treatments, pregnancy, and breastfeeding, I've finally been able to try two different calcitonin gene-related peptide (CGRP) monoclonal antibodies, or CGRP inhibitors. CGRP inhibitors are drugs that block CGRP from binding to CGRP receptors, a key contributor to nerve pain and inflammation of migraine. Ajovy was the first one I tried. Here's an enthralling capture of my first at-home injection. I continued these for 3 months (no improvement) before Dr. Rau prescribed me another CGRP inhibitor called Aimovig. I'm due this week for my second round of Aimovig but so far....well, you can probably guess.
If you remember from my last post, I had consulted last year with Dr. Schievink, director of the CSF Leak program at Cedars-Sinai. After a review of my imaging, Dr. Schievink didn't see evidence of a dural tear. But Dr. Rau wasn't convinced it was worth writing off the possibility completely. Apparently, 20% of leaks show normal brain imagining, which is kind of shocking. That's why put me in touch with Dr. Callen and the CSF Leak program at UC Health University of Colorado Hospital.
Real quick, if you're wondering how exactly a dural tear and subsequent leak of CSF causes a headache, here's a good explanation from Johns Hopkins:
"The brain normally sits inside a bag filled with spinal fluid that extends down from the skull into the spine. The bag consists of membranes called the meninges (as in meningitis). The fluid helps to circulate waste products out of the brain and provides cushioning and support. When the pressure of this fluid is too low typically when there is a small leak somewhere in the meninges — the brain may sag downward when the patient is upright, stretching the meninges and nerves lining the brain and causing pain."
CVFs require a special type of testing called dynamic myelography to diagnose.
Despite not yet having a full workup, Dr. Callen has been honest with me. He's doubtful (but not certain) I have a leak. This shouldn't really surprise me, especially since there's never been orthostatic component to my pain (head pain worsening upon standing, improving with lying down). With that said, it seems like he knows enough to know there are few absolutes. He even said during our visit "This disease has humbled me." Though the probability is low, there is still a chance I am leaking. And when you've suffered this badly for as long as I have, you cling to single digit probabilities because sometimes that's all you have to cling to.
The plan right now is for me to travel back to Denver in late summer for an MRI myelogram. I've actually never had this specific type of imaging done before. Here's what will happen: they'll insert a spinal needle into my spinal canal and inject contrast material in the subarachnoid space using fluoroscopy (a real-time form of x-ray) to get a more detailed picture of the spinal cord, nerve roots, subarachnoid space, and spinal column. After that, I'll have a blood patch performed.
For the blood patch, I'll first get an IV inserted. Once in the procedure room, I'll have a CT-guided lumbar performed at a specific site. The blood they obtain from my IV will then be injected into the spinal needle in an attempt to "patch" a leak (if there is one). The tricky part will be the blood patch recovery. I'll need to lay as close to absolutely flat as possible for 72 hours (I can get up briefly to go to the bathroom and sit up to eat). If I don't feel an improvement in the weeks/first few months after my blood patch, we feel confident we can eliminate a leak once and for all and figure out what the next step is from there. As always, one day at a time.
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