A lot more meds and an upcoming implanted neurostimulator trial!

Here I am, long overdue for an update yet again. So how are things going over here? Well, iIf my five year old daughter, Ryan, could sum it up for  you, she’d likely throw her little fingers up into the most confident air quotes you’ve ever seen and say “Mommy’s head has felt soooo good these last seven months.” She’s still working through the nuances of sarcasm and irony but in this particular instance, well….she ain’t wrong. 

The truth is, these last 6 months (9 months…12 months) have been filled with some of the worst pain days of the last 13 years. And given what the last decade + has been like, that’s a real gut punch just to type. For no identifiable reason, my headache has been so terrifyingly out of control. I can’t even think of another way to say it. It’s also been a very challenging few months working through one insurance denial after another, which I’ll get into. 

In my last post last March, I recapped my trip to Park City to see Dr. Kutcher, the neurologist I’d been working with for the past 2.5 years. When I returned home to Arizona, I continued working remotely with his vestibular physical therapist, but the vestibular rehab was wrecking absolute havoc on my headache. That could be a positive indication that those systems are in play, but by the end of spring we had all decided it needed to take a backseat just so I could regain baseline function.

I’ve responded similarly to vestibular work in the past so it wasn’t entirely surprising, but incredibly frustrating nonetheless; to be working so hard just to gain an inch of traction and instead slipping, slipping, slipping further into pain that feels so inescapable. 

Here are a few snapshots of pain flares in action. These skin changes on my neck are indicative of of the CRPS that gets triggered during some (but not all) of my worst increases in head pain. Cute, right?

By the end of March, I had completely stopped ketamine. We had a few new medications to try though -  just anything to make even the smallest dent in my headache would be a win. Though I typically don’t have adverse reactions to most that I try, a few of these didn’t end well for me. First up was an anti-seizure drug called Lamictal, which is one of those meds you start at a low dose and gradually ramp up. That didn’t help and actually gave me hives (not the best, not the worst). Side note: If you're new here, I don't have (and never have had) seizures but these kind of anticonvulsants are often used to treat chronic pain because they help regulate abnormal electrical activity in the nervous system, which is also implicated in neuropathic pain, where damaged nerves send excessive pain signals to the brain.

There were two more antiepileptics. The first was Keppra, which provided nothing aside from a whole lot of fatigue and then, Oxcarbazepine. Oh, Oxcarbazepine. That one caused quite a bit of nausea and by the end of week one, I was headed straight from the parking lot of Ryan’s Sunday morning soccer practice to the emergency room. I’ve never thrown up more in my entire life. And that level of throwing up took my head to a level of pain where I was barely conscious. “Fun times” Ryan might tell you.

Mid-spring, I had gotten some Botox (just because it had been quite a few years and felt like it couldn’t hurt to try again) but after the second round a few months later, Dr. Kutcher suspected I could be experiencing a flare due to its wear off. I mean, that doesn’t feel fair. 

Through the summer, I tried an abortive analgesic called Fioricet, in combination with Toradol. Many years ago, Dr. Dodick at Mayo would sometimes write me a prescription for Toradol (a non-steroidal anti-inflammatory) that Craig would inject. During super intense pain flares, the Toradol, albeit temporary, would sometimes help take the edge off. Unfortunately, not the case at all this time around. 

Then there was Quilipta, an anti-CGRP migraine drug (also known as an CGRP inhibitor or CGRP antagonist). This class of migraine meds that are supposed to treat the pain by blocking the activity of a protein called calcitonin gene-related peptide (CGRP), which is thought to play a significant role in triggering migraine pain by causing inflammation in the membranes surrounding the brain. These medications bind to CGRP or its receptors to effectively prevent the activation of pain pathways. Some are abortive but most are preventative. 

It’s sort of wild to reflect on the evolution of migraine medicine in the 13 years I’ve suffered. I remember sitting at Mayo with Dr. Dodick back in 2012 and hearing about these new medications that would be gaining FDA approval in the coming years. And If you’ve been following along for a while, you might recall that I’ve tried several CGRP antagonists before. 

Over the past few years, I’ve been on Ajovy, Aimovig, Nurtec, Ubrelvy, and Zavzpret. Obviously none have helped me, but patients can respond very differently to each which is why you can’t write off the entire class of meds based on your experience with just one. 

The fatigue I experienced from Quilipta was no joke, especially coupled with my sky high pain levels. I was struggling to make it to Ryan’s 7pm bedtime, crawling into bed myself as soon as she was asleep. It’s one thing to endure an unwanted side effect when a medication IS helping, but it’s really shitty to be experiencing those downsides when the medication isn’t even touching your pain. It feels like being kicked when you’re down and not even having the energy to get back up.   

Most recently (just last week), II tried yet another CGRP drug called Vyepti. Vyepti is a once-every-3 months infusion, whereas the others have been either injectable or oral medications. I was able to have Vyepti administered by a nurse here at home, which was at least convenient. IV pole to my right and my Charlie girl curled up at my feet.  So far, I haven’t felt any benefit but possibly still too soon to write it off. 

The last medication worth mentioning is an Oxytocin nasal spray. There's some interesting research to support oxytocin as a modulator of pain perception and a natural pain reliever due to its analgesic properties and ability to reduce stress and anxiety associated with chronic pain. Oxytocin interacts with pain pathways in the brain, potentially by activating the endogenous opioid system, leading to pain reduction. And the most direct way to deliver oxytocin to the brain is intranasal spray. I've been using this prescription spray for a couple of weeks now. So far I can't say I've felt anything but the dosage is gradually titrated so we'll see if I notice anything. Can't hurt to try.

So now rewind for a minute back to April/May. Craig and I met remotely with a new doctor based in Dallas, Dr. Kenneth Reed of US Migraine (now Reed Migraine). Dr. Reed is the inventor of the “Reed Procedure” for migraine treatment. Simply put, the Reed Procedure involves implanting a small device under the skin near the occipital nerve, which delivers mild electrical pulses to disrupt pain signals and alleviate severe chronic migraines in patients who haven’t responded to other treatments (hi, it’s me!). It works by targeting the nerves in the supraorbital and occipital regions of the head (hi, it’s my headache!)

It wasn’t that this procedure has never been on our radar. We actually spoke to Dr. Dodick at about it a decade ago but at that time, implanted neurostimulators for chronic headache involved wire leads running under the skin up along the spine and I was told that it would likely have an effect on my ability to be active.

Craig and I had a really thorough and thoughtful conversation with Dr. Reed. He explained that patients first undergo a temporary TRIAL stimulator first to ensure that the procedure works for them before fully committing to the permanent implant. During the trial, they implant a temporary unit underneath the skin (similar to an IV tube) which stays in for just 3-7 days. I’d stay in Dallas during that time and have it removed before flying back to Arizona. For patients who experience relief with the trial, the effects are typically dramatic, which allows them to make a decision of whether or not to proceed with the permanent stimulator with a good deal of confidence. 

For the permanent stimulator procedure (which would be on a separate trip), two leads are superficially implanted right underneath the skin along the supraorbital nerves above each eyebrow. 

Two leads are superficially implanted right underneath the skin along the occipital nerves in the back of the head. 

And a battery/pulse generator device is superficially implanted right underneath the skin on the left side of the chest. 

Even though the leads, battery, and connecting wires are right under the skin, they’re not at all externally visible so you would never know by looking at someone that all this magic is happening just beneath the surface. Honestly though, if it took my pain away, I’d proudly rock that look all day every day. 

There was no doubt from Dr. Reed that I’m a prime candidate for the surgery. And from my perspective, it also feels like there’s not a whole lot to lose moving forward with the trial. If it works, life changing. If it doesn’t, I’m not worse off than I am now. Reed Migraine states that the stimulator does work for over 80% of their patients, which is very encouraging. But I’ve also learned not to get too attached to stats and success rates and just take it one step at a time.

Here’s where things got a little bumpy for us. As soon as we had that phone call with Dr. Reed and had all my records sent over, we began the pre-authorization process. Over the course of thirteen years, Craig and I have been through the ringer with insurance. And as you might guess given every treatment/therapy that I’ve pursued, there has been quite a lot that we’ve come out of pocket for. But even the majority of medications and procedures that have been covered have only been approved after initial denials, appeals, more denials, peer-to-peer reviews, etc. And hey, I get that those systems are in place for a reason and I don’t think I’m an exception to the rule. But the shit we’ve been through trying to get treatments approved is absurd. For example, several years ago I was having a nerve block done under CT guidance. The procedure was denied, appealed, and ultimately approved. My pain management doctor opted to perform each side on different days for both safety reasons and to better identify a pain source (so technically they were treated as separate procedures). After the whole rigmarole of getting the first one approved and performed, the second side was denied and we had to restart the whole appeal process. That just paints you a little picture of what we're working with here. 

Or take the Yvepti infusion I had just last week. It was submitted to insurance along with 65 pages of my headache treatment history from my neurologist. I received a denial letter saying:

I haven’t had more than 4 migraines per month? How about every day of every month for approximately 160 months and detailed medical records documenting 13 years of treatment? What the actual fuck.

The letter goes on to explain that Yvepti is only considered medically necessary if I’ve tried (without success) the other anti-CGRP drugs and then goes on to list Ajovy, Aimovig, Nurtec, and Ubrelvy. Do you remember a few paragraphs ago when I listed those CGRP medications as ones I've tried in the last 2 years? If so, congratulations - you've already read more than the person whose literal job it is to review my required medical history and determine the fate of my treatment. Back through the appeal process we went and fortunately, Yvepti was ultimately approved. 

My intention in rehashing this isn’t to dwell on bullshit I obviously have no control over. I like to think that it’s not in my nature (or Craig’s) to assume the worst of others’ intentions, but it is just mind numbingly insane to me that it is someone’s job to review my records and make a decision on very objective criteria and they can just fail at it so hard. And all at the expense of my pain. I would love nothing more than to stand face to face with an individual who is making these determinations and ask them to consider the human being on the receiving end; to ask them to imagine if that person suffering was their wife, husband, child, or parent. 

Anyway, sometimes the appeal process IS fairly straightforward, but in the case of this Reed Procedure, it’s taken approximately 7 frustrating months. Fortunately, Craig is (and always has been)  my biggest advocate and he takes this all head on. If you only knew the hours he’s spent on the phone with the insurance company, the case managers, the benefits team, the doctors offices, the attorney, trying to sort it all out. It makes me feel so grateful for him but also infuriated that this is the system people in my position have to fight against. Chronic pain warriors, many of who struggle just to get through the day, have to battle the very insurance companies we are PAYING customers of, just to get the care we need. And sometimes even then, it’s still not enough.

Obviously our goal was to not be paying cash for this surgery. We fought through appeals, the clinic resubmitted under several codes since I technically have more than one diagnosis (including complex regional pain syndrome), and through each step of the process, the insurance company maxed or exceeded their “response window” before sending the rejection. The last step was an external review, which was ultimately denied just a few weeks ago. So that really blows. 

The positive is, we are moving forward with the Reed Procedure regardless. And another positive is that we pay up front for both the trial and the permanent implant but if the trial doesn’t work for me, we get a complete refund. That is not even close to common practice, and is one more reason we feel so confident in giving this thing a shot. If it doesn't work, I'll know I've given it a fair shot and if it does work, it'll be the best money we've ever spent and maybe will ever spend in our lives. Cautiously optimistic as ever.

My trial is scheduled for early January. So Craig, Ryan, and I will head to Dallas for about 5 days. I'll get all wired up on a Tuesday morning and sort of go about the next few days as normal. For patients that have identifiable triggers, they're advised to lean in to all the things that spike their pain with the temporary stimulator. For me, that shouldn't be an issue. Then it'll be removed on Friday and FINGERS CROSSED, I'll be elated with the outcome and the surgery can be scheduled not long after.

I'll update more from Dallas!

My trip to the Kutcher Clinic

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."

From my perspective, the test consisted of listening to a variety of sounds and cognitive stimulation in the form of spoken words pairs. I had to pay attention to the auditory stimuli while maintaining visual focus on a set point on the computer monitor. 

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).