A long overdue headache post comin' atcha.
When I last updated in June, I talked about microdosing with psilocybin (i.e. mushrooms). I called it quits on that after a month or so. It wasn't making a dent in my pain levels at all and oddly enough, seemed to actually be making me feel worse. How?? Considering the proposed mechanism of psychedelics on the body's serotonin receptors, it makes very little sense that they could make my headache worse. But then again, medical mystery is kind of on brand for me.
In June, I was also getting ready to head back to Denver for another procedure. As you might remember, I had been seeing Dr. Callen who heads the CSF Leak program at UC Health University of Colorado Hospital. Though no imaging to date had pointed to me having a dural tear that could be causing a leak of my cerebral spinal fluid, there was a chance that an MRI myelogram could tell a differently story.
An MRI mylogram is where they insert a needle into the spinal canal and inject a contrast material into 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. The plan, after that, was for me to have a blood patch performed. You can refer back to my previous post if you want to learn more about what that consists of.
In early summer, sometime between my last trip to Colorado and my scheduled return trip, I had begun working remotely with a new neurologist, Dr. Kutcher, with the Kutcher Clinic for Sports Neurology. This is a doctor we were connected with through Craig's work - he works with many elite athletes and as an advisor to the NFL Players' Association. In my initial appointments with him, it was clear that Dr. Kutcher wasn't super keen to the idea of a blood patch, concerned (understandably so) there was a chance it could make my symptoms worse. With such a seemingly low probability of a leak, I was leaning towards putting that plan on pause, at least until I had tried a few things with Dr. Kutcher.
But then one early morning in late July (Craig's 50th birthday to be exact!) I had a total random fall hopping off a bench while working out in our garage and broke my foot. I basically just landed on the side of my foot, then fell into (and crushed) a metal box fan. Silly me! Just trying to keep things interesting. I would need surgery the following week - a screw inserted to fixate a fractured fifth metatarsal. At that point, the Denver trip was delayed whether I wanted it to be or not. The whole foot ordeal ended up being quite a speed bump - or series of speedbumps - over the next few months, but I'll get back to that.
I will say, though, spending just a few short months with an injury so visible to the outside world was such a harsh reminder for me of just how invisible my headache really is - the pain that is so, so, SO much worse than any broken bone could ever be. Just the idea that needing to wear a boot on my foot or get around on crutches would be disruptive to my life feels laughable when I consider how my head pain affects how I move through the world. Ooof.
So anyway, I spent June doing a bit of a treatment reset with Dr. Kutcher. After taking an extensive case history (no small feat), his simplified perspective was that my head pain is not caused by one single driver right now. Yes, there is surely central sensitization at play - a pain loop that's proven incredibly difficult to "turn off." Yes, the topical skin changes (new pics below) appear to be evidence of complex regional pain syndrome (CRPS). Yes, the nerves in my neck are contributing. The pain is central, the pain is peripheral - it isn't a case of either/or. Not really new information, but validation nonetheless.
Dr. Kutcher pointed out that although I've been on a lot of meds over the years (both traditional migraine medications along with others that target the central sensitization/neuropathic pain), there were some missing from the list. First though, he wanted me to do a GeneSight Psychotropic test, which is a blood test that analyzes how your specific genes may affect the outcomes of different medications - a simple test that allows for a much more targeted approach to medications, compared to the conventional trial-and-error process. It's especially impactful when you consider how expensive and time-consuming trying different drugs can be. It can often takes weeks or even months to work up to the right dose, give your body a chance to respond, and even taper off if deemed ineffective.
So anyway, I did that test and we started working through some different medications. There was Nurtec, then Ubrelvy, then Zavzpret, which are all calcitonon gene-related peptide (CGRP) receptor blockers aimed at treating migraines. But no dice. And these wasn't my first go CGRP inhibitors. Having already eliminated Aimovig and Ajovy injections, we agreed I'd officially exhausted this class of medications. Then there was Nortryptaline, a tricyclic antidepressant used off label to treat chronic pain. That one came with some ick side effects for me, mostly nausea (but more importantly, no pain reduction).
Right around this time (early August) I was experiencing massive (f-ing MASSIVE) pain spikes due in large part to my foot surgery. One thing I've learned over the years is just how poorly my head responds to extra inflammation/trauma in my body, from the most simple things like colds/flus/vaccines to more severe like surgeries, childbirth, mastitis, etc. So between breaking the bone, the surgery, and a horrible reaction to the Oxycodone I was given, my head was just absolutely out of control. Unfortunately, that trend continued through the fall.
I was trying any little thing I could to bring my body into balance - continuing my workouts, daily cold plunging, and a biofeedback technique called HeartMath. Based on the notion that heart rate patterns can affect your mental state just as much as your mental state can affect your physicality. HeartMath uses coherence technology. It's pretty simple - you attach this little device to your body that measures your heart rate variability (HRV), which is a measure of the time variation between heartbeats. HRV is regulated by the autonomic nervous system (ANS). The ANS has an important role in the body's physical response to stress. Specifically, the sympathetic nervous system (SNS), is responsible for the "fight or flight" response. When you live in chronic and persistent pain, your body's "fight or flight" mode never gets turned off. The goal of Heartmath Biofeedback is to learn to change your heart rhythm to create physiological coherence, to help you feel less alarm and more calm.
Then in November, I began a course of at-home ketamine treatments. Not my first special K rodeo, but it had been almost a decade since my infusions. For those unfamiliar with it, Ketamine is a dissociative anesthetic. At sub-anesthetic doses, it can be used to help treatment-resistant depression along with acute and severe pain. But it also shows promise in treating chronic pain, particularly neuropathic pain, which is just is a whole other beast. It's been shown to benefit patients suffering from central sensitization and complex regional pain syndrome (CRSP), which we know are at least partial contributors to my chronic head pain. Though the infusions back in 2014 didn't do much to help me, it felt like perhaps it was worth revisiting.
This time, though, I started with oral ketamine. I opted for sublingual tablets versus jumping straight back into intravenous for a few reasons: I didn't tolerate the IV super well, whereas this is a lower dose. That also makes it more cost effective and a lot more convenient. In November, I began with two sessions per week and was able to schedule them on days where Craig was able to pick Ryan up from school, as it wouldn't be safe for me to drive for the rest of the day.
My at-home sessions looked like this: Thirty minutes after taking an anti-nausea med, I would get into bed (bedroom blacked out) and place the tablet or troche under my tongue. (I worked up to my prescribed dose over the first few sessions.) I would let the tablet dissolve in my mouth and then keep my mouth closed for about 15 minutes without swallowing. Then I'd spit it all out into a cup. Seems like an odd way to take medicine but the reasoning here is that when you swallow ketamine, it undergoes first-pass metabolism in the stomach and liver, where it's converted to something called norketamine. Norketamine, though still psychoactive, isn't as potent as ketamine. If you do swallow it, you'd likely need a higher dose to achieve the same the same therapeutic effect.
So anyway, around the time that I'm spitting it out is when I'm starting to feel...mmm, on drugs? I quickly get my earbuds in and click "play" on the recommended Spotify playlist, close my eyes, and relax my head onto a cold icepack atop my pillow (the ice is my personal touch - I never lay in bed without it). What happens from there is hard to describe and it does change a bit from one session to the next. The first day I really hated it. I've never enjoyed feeling like my mind is entering an altered state and there's nothing I can do to stop it. But it's gotten much easier with subsequent treatments, now that I have some general expectations. It feels a little like dreaming without being asleep. A trance-like state, I guess. The "high" lasts only about an hour for me, though I usually turn off the music and try to sleep or at least rest in bed for an additional 45-60 minutes. I feel pretty gross for the next few hours, though. Wiped out and a little hungover feeling. But that seems to subside by the next morning.
I finished up my course of Ketamine treatment by early December but was unsure of whether to continue. I was sort of having a more normal (ie baseline pain) few weeks, but there seemed to have been so many other variables affecting my pain leading up to that too, so it was hard to know. And there was about to be another hiccup.
After several months of physical therapy, my foot wasn't healing super well and it was clear that the screw needed to come out. Again, totally straightforward surgery but it took another huge toll on my head. This time, I wasn't touching a pain killer but that didn't seem to matter. And then the week after, I came down with an upper respiratory infection that progressed to pneumonia. All things that are a nuisance but it was like my headache was just taking one hit after another. And once my pain had reached this peak, it was just unrelenting. January was one of the hardest headache months I've had in the last 13 years. I was waking up in the morning and falling asleep at night at a level of pain that has been reserved for the worst moments of my worst days. Completely unsustainable but also....what was option B? We had some really stormy weeks here too, and as much as I crave a cloudy day in the desert, the shifting barometric pressure was adding fuel to the fire.
Towards the end of January, Craig had something called the Ammortal Chamber come to his work that I tried out for a few sessions, hoping it might help break this cycle I was stuck in. It uses a combination of pulsed electric field (PEF)/pulsed electromagnetic field (PEMF), red light photobiomodulation, molecular hydrogen, and vibroacoustic therapy. Super relaxing. And defying all odds, my headache spiked even more. (Actually not my first time I've had a negative response to red light therapy, which baffles any practitioner I talk to due to the ability of red light to increase blood flow and reduce inflammation.) Again, it makes very little sense how that could worsen my headache.
In mid February, I decided to start a second round of weekly ketamine. Though some people do have profound and fairly immediate relief from Ketamine therapy, it also isn't uncommon for it to take more time. And now that I had some distance from my surgeries, I wanted to give it one more shot.
Then that brings me to early March, when I traveled to Park City to meet with Dr. Kutcher in person. Telemedicine is so wonderful, but there are some things that just can't be accomplished with a screen between you.
One of the reasons Dr. Kutcher wanted to see me in person was for some cognitive testing. My palms get sweaty just writing those words, so you can imagine how imagine how I feel going into it, hah! All kidding aside, the testing we did was quick and painless (nowhere near as draining as all of the brain mapping I had done a while back at the Brain Resource Center in NYC.) He uses an assessment tool called NeuroCatch, which evaluates brain activity using event-related potentials (ERPs).
"ERPs are long-standing extensively studied brain activity responses linked to cognitive function. These vital responses allow for objective evaluation of Auditory sensory, Basic attention, and Cognitive processing, which can be used to optimize individual brain health and guide brain care in conditions like brain injury, mental health disorders, and neurological diseases.
ERPs are a “brain fingerprint” of cognition. They have been rigorously studied and validated in over 150,000 medical publications. They increase the accuracy of existing subjective cognitive evaluations. They are sensitive to external factors such as sleep, stress, and fatigue/inattention[1]; yet they are impervious to user bias that attempts to hide the effects of a head injury, for instance."
So how did I do?
Much to my surprise, pretty good. From an auditory and cognitive processing standpoint, my amplitude was fine and my latency was quick. He was actually a little taken aback by how quick and explained that the brain responding "too quickly" could potentially indicate that the wrong areas are firing.
Next, I headed into the gym for what was arguably the least pleasant part of my visit. The goal here was to taken me through a series of exercises that would purposely flare my symptoms by overstimulating my brain. Here was the recipe for that fun experiment:
1. Music turned on
2. Me, standing in in a 4-square layout on the gym floor, following instructions to jump forward, back, jump 180 degrees, jump 360 degrees
2. While following jumping instructions, counting backwards from 100 to zero by multiples of 7
3. While following jumping instructions, catching a multi-colored object with whichever hand was called out by whichever colored portion of the object that was called out
Let me just pause here and remind you that when my pain levels are spiked, my brain feels like it will explode if two people start talking to me at one time. So it goes without saying that this part of the afternoon really...fucked me up.
Which was the goal! Because next my eye movements were assessed again to measure any chances with an increase in pain and general feelings of dizziness. And they weren't majorly affected. This indicated that visual input doesn't seem to be a major driver and the inefficiency of my vestibular system is a more likely culprit.
He also had me take 2 Nurtec that evening (one of the CGRP migraine abortives I had tried months ago) just to see if made any sort of dent (which it did not).
So overall, what information did all of this testing provide? According to Dr. Kutcher, there are two primary "flavors" of central pain: hypersensitivity (meaning the part of your brain that processes pain is super efficient at doing so) and structural changes. He thinks that for me, hypersensitivity is a bigger issue than structural changes. So where medications like serotonin uptake inhibitors and even drugs like Ketamine are still worth pursuing in an effort to make structural brain changes, retraining of the brain through vestibular therapy will be most important for me.
On my second day at the Kutcher Clinic, I met with the vestibular physical therapist. His assessments made it pretty darn clear how off my vestibular system is. As an example, he'd have me do things like stand and look at the wall in front of me, close my eyes, then have me turn around and stop/open my eyes when I thought I had returned to my starting position. I didn't excel here, to put things lightly. You would have thought I was failing a roadside sobriety test.
So the plan right now is to focus on some proprioceptive work in an effort to recalibrate my vestibular system. I have a program to do from home that consists of basic eyes-closed movements and sensory motor control exercises, like using a laser attached to my forehead to trace my eye movements through this maze while balancing on one foot, moving forward/backward, side to side, etc.
I've seen vestibular specialists at Mayo before, but that was well over a decade ago and at that time, it was more to rule certain things out. This will be my first time really focused on a vestibular rehab program.
Dr. Kutcher agreed I should finish out this current Ketamine protocol (yesterday was my last day on it) and if there's been no improvement (which there's not seeming to be), he'd like me to try a medication called Lamictil (an anti-seizure med but another that's used off label for neuropathic pain). He also did a series of anti-inflammatory trigger point injections just to see if those would do anything. I've obviously had injections like these many times before so we weren't super optimistic. And they didn't do anything.
I think that about sums it up for now. I'm hopeful that this vestibular rehab will be a step in the right direction at the very least. Just one step is all I need right now.
And since I always like to leave it on a happy note, signing off with this one. She might be part of the reason I'm exhausted by 7pm but she's definitely the one who gives me energy to get through my hardest days. The brightest light for me (and anyone who meets her).
