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Tuesday, June 6, 2017

these last six months

...have gone by without a headache update. Lame. I know.

Even lamer is that I have a whole bunch of unanswered emails from readers (fellow headache sufferers) sitting in my inbox right now. It's not that I don't appreciate (and want to reciprocate) the support or ability to bounce treatment options off of each other; just that I've somehow felt wholly incapable of diving into those conversations. Like I just haven't had the mental or emotional capacity to talk about the pain that already consumes every waking minute of my life.

It's weird. When I first started writing this blog in early fall of 2013, the words just seemed to pour right out of me. As more time passes, though, I struggle to capture and share exactly what I'm going through. BUT, I should try.

So, how am I doing?

Well, I'll start by answering that in broader terms. That's something I've learned I need to do, as much for my own wellbeing as to not totally disappoint whoever's asking. So much is good. Especially when I step outside the tiny bubble that is my life, and consider the magnitude of suffering in the world around it, my pain - which has been especially high these last few months - starts to feel downright trivial.

Except that...it's not trivial. It's fucking overwhelming to wake up in pain every single morning and fall asleep in pain every single night and have a whole day in between those two points in time that are filled with pain but also need to be filled with life. It's downright terrifying - panic-inducing at times - to not know how much longer my pain will last. So when someone asks me how I feel, my answer comes from my attempt to balance those two perspectives. No one likes a Debbie Downer (cue the music), but you can only hear bullshit answers come out of your mouth so many times, you know? So my response scale ranges from "GREAT, HOW ARE YOU?!" to "I'm actually having a really tough day/week/month, thanks for asking" and varying levels of honesty in between.

Quick side story: I walk my dog Charlie at a park every morning (and evening) so see a lot of the same people out for their daily strolls. Though most of these acquaintances would otherwise have no way of knowing about my whole headache ordeal, that stylish neck brace I sported for a few months post-neurosurgery invited some obvious conversation, so every now and again someone will ask how I'm doing. On one recent early morning, a friendly fellow walker did just that. And his how's-your-head-doin' was followed up with "Well, what do they doctors say? Is there ANY hope?"

I don't even remember how I responded, just that I could feel the the all-too-familiar lump in my throat and tears forming behind my glassy eyes. Damn it. I've been here too many times, so by this point, when my eyes start burning, I know exactly how many seconds I have to wrap up a conversation. Hah!

I'm not relaying this fun little story to you for sympathy sake, because it wasn't this poor guy's fault for my overly emotional reaction. I just think it proves how difficult it can be for others (even the most well-intentioned) to truly understand what it's like living with debilitating pain twenty four hours a day, seven days a week. What it's like to have pain management as a full-time job instead of a purposeful, fulfilling career; what it's like to have to lay down in bed every afternoon with an ice pack on your head and take a two hour nap if you want to have any chance of making it through the rest of the day; what it's like to feel the anticipatory excitement of marrying your best friend while stressing out about how you'll make it through your wedding day in this much pain (but never mind that single day in September...how about every day after that for the rest of your life?); what it's like to wonder how you'll be able to start a family together if something doesn't change.

Part of understanding is having the empathy to imagine as best you can what it's like to be on the receiving end of the specific words you choose to speak. "Is there hope?" Because shit, if there isn't hope, what am I even doing?

On a related note, I found this list pretty darn spot on: Helpful things to say to someone in chronic pain.

Shoot, I'm totally bumming you out. Well, I hope not too much, because I haven't given up or anything (far from it). Just trying to give it to you straight.

Treatment updates: 

I've (we've) been busy as always since November, exploring new treatments and revisiting some already tried. Clearly nothing has been a magical solution, but I think (hope) it's still worth explaining everything I've done. Maybe I try something and it doesn't help me. But I know there is a chance it could help someone else. Anyone who suffers from chronic headaches/migraines (or any type of chronic pain) can appreciate that there is no magic bullet; no single solution or cure. But that doesn't mean there isn't a pathway to get better; just that everyone's pathway is paved differently. When I start feeling better (Craig has conditioned me to use when and not if), I may be able to identify turning points - maybe even game changers (if I'm lucky) in my treatments - but realistically, will I be able to look back and truly quantify the impact of each adjustment, medication, modality, procedure, injection, therapy, and approach that I've taken? Likely not. But choosing to believe that I can and will break my headache means that each step is leading to the next. The solution is just what happens when they accumulate.

In somewhat chronological (but also overlapping) order, here's a look at what I've been up to:

I discussed this in my last post. My neurologist (Dr. Dodick at Mayo Clinic) had recommended that I use my handheld TMS (transcranial magnetic stimulation) device 8 times per day for 3 months (based on outcomes from clinical trials). I stuck with it for just over 4 months (to be safe) but unfortunately, didn't feel any relief so eventually stopped.

Total-body mobility work
Back in December, I started feeling like I really needed to do something to improve my thoracic spine and hip mobility. It just seemed like my head pain was making everything so stiff, and probably vice versa. And I knew that if I had any chance of breaking the vicious pain-spasm-pain cycle, it was time to get serious about a global approach to my mobility. Manual bodywork is great, but I needed to change the way I moved. And more importantly, prioritize the work that's required to make it happen.

After a little research, Craig and I started this Elements program through GMB Fitness, which is a 7-week online training program that uses locomotive exercises and targeted mobility work to help build strength, flexibility, and motor control. I'd highly recommend this program (or something similar) to anyone who is serious about getting their body moving and feeling better. Whether you're an elite athlete or total beginner, you'll absolutely benefit from it.

After finishing Elements, I wanted to find some similar in-person training. I hit the jackpot when I stumbled upon a local studio called Premier Fitness Systems, which offers a class called Movement Project (MP). MP is basically a combination of natural movement/animal flow type exercise, mobility and agility work, gymnastics, and strength (think a lot of bodyweight work, rings, kettlebells, sandbags, etc). I try to make it to at least 3 classes per week, and then lift/condition on my own another 3 times per week. Though my training schedule is apt to change depending on the kind of day/week I'm having, I ALWAYS feel better (mentally) when I get it in. It's my escape/distraction from pain; a reminder that there is still a part of me that can work hard and reap the benefits. That feeling is the emotional fuel I run on to keep chasing my pain. I know that's maybe hard for other people to fully understand. I get that.

More PT 
I spent a few months working with another physical therapist at EXOS (where Craig works). The goal - aside from just getting another set of ears, eyes, and hands on me (because every therapist has a different skill set and you just never know what you might have missed) - was to try to free up my T-spine and just bring down some of the spasm in my neck. We also worked a bit on my hip pain, which I know is coming from my spine, which is all part of what's going on up above. I can't write more about that though because it's overwhelming me. Hah.

Through his referral, I also saw another local PT (Tim Fearon) for a few sessions too.

After going down a rabbit hole of headache research one day, I came across a natural neuron support supplement called Gliacin, which contains a blend of phytochemicals (plant derivatives that have known physiologic effects) derived from Boswellia serrata . I've experimented with many, many, many supplements for my head over the last six years (now I just take a daily multi, fish oil, vitamin D, and probiotic) but was still intrigued by this one because of the data behind it. It boasts a 78% responder rate in clinical trials for a range of headache conditions, including migraines, hemicrania continua, paroxysmal hemicrania, and cluster headaches.

I took Gliacin for a few months at max dose (3 capsules, 3 times/day) but no dice. (If you want to try it, they sell a sample pack but I'd recommend just getting the full bottle since you'll need more than what's in the sample before you know if it's going to help.)

Over the winter, Craig met a neuroscientist through work who has developed a neurofeedback app called Opti Brain. Honestly, I have a hard time understanding exactly how neurofeedback works so I'm going to rely on my trusty friend, the copy and paste (compliments of The Hull Institute).

Our brains, the controllers of our bodies, are intricate systems of chemical and electrical activities with about 100 billion neurons. While we know a lot about how the brain works, there is still a lot to learn. What we do know is that the brain is designed to adapt to changes in the body and our environment and function well at all times. However, for a variety of reasons- genetics and environment- the brain gets "out of whack", so to speak, and does not function as well as it is able. The brain then becomes "dys-regulated". Simply put, a dys-regulated brain tends to be over-stimulated when it is supposed to be calm and under-stimulated when it is supposed to be attentive. Sometimes, the brain self-corrects. When it doesn't, this dys-regulation becomes “the new normal”.  So it makes sense that we should be able to re-train the brain to function optimally, the way it was designed.   In neurofeedback training, we work in conjunction with other treatments. When your brain is better regulated, it allows you to change behaviors and thoughts.

Though I've tried something sort of similar before (Brain State Brainwave Optimization), we figured I obviously had nothing to lose by giving this a shot. Worst case scenario, it doesn't do anything. Best case, it helps to calm down some of the pain signals in my brain.

Opti Train is a feedback program that trains patterns in the brain that lead to optimal performance (they work mostly with athletes). It works like this: you put on a MUSE brain sensing headband (the sensors just sit behind your ears) and then you have this app on your phone that effectively "trains" your brain using audio and/or visual feedback. Your brain patterns control the volume of the music or make the videos play, which is kind of trippy because you're not consciously doing it. So basically, for about twenty minutes per day, I'd sit on the couch with this thing on my head and stare at my phone while listening to one song (luckily Wilco's One Sunday Morning is like three hours long) and staring at a video of wildflowers blowing in the wind. My brain would control the volume of the song and the speed at which the flowers would come in and out of focus. (Trippy...I told you.) You can check out these video demos if you're interested in learning more. 

We were tracking my results (which then get mapped on the sister app, Opti Brain) and Dr. Crews was weighing in to see if there were any patterns in my pain levels and brain activity (see sample map below from Day 4 of recording). I did it for a couple of weeks. It felt relaxing at times, but I eventually stopped when I really didn't feel like it was doing anything to my pain levels. 

Infrared Sauna 
Craig and I had an infrared sauna installed in the house a few months back. Unlike a traditional steam sauna (like the kind you'd find at a health club), infrared saunas use the wavelength of the visible and non-visible light spectrum of sunlight that heats the body normally. The heat from these types of saunas effectively penetrates tissue, joints, and muscles and can be a helpful modality for pain management and improved recovery (among other things).

If you want to check out the relevant research a little more, start here: New hope for chronic pain sufferers infrared sauna therapy shows impressive pain reducing results 

I try to get in the sauna every day for at least 30 minutes but usually a full hour (I probably average about 5 times per week).

Consistent Soft Tissue Work
I've had so much soft tissue work over the years (pre and post-surgery), including massage, dry needling, Traditional Chinese Medicine acupuncture, scraping, cupping, visceral mobilization etc. etc. but it's been a while since I've had it done on a super consistent basis. So for about a month now, I've had several sessions per week with one of the soft tissue specialists at EXOS (from Movement Restoration). From my feet to my head, the goal has been to just restore tissue to it's optimal state in hopes that everything else has a better chance of working the way it's supposed to.

Gravitational Pattern Alignment 
Not too long ago, in a sort of random series of events, I ended up seeing a new chiropractor, Dr. Vetanze, who practices something called Gravitational Pattern Alignment (GPA). The goal of GPA is to correct the weight bearing torso/spine to be right/left equally balanced in the gravitational field in the upright position. I wasn't really seeking this treatment out, but a fellow upper-cervical-spine injury-related-headache-sufferer that I met through my blog (who lives in NY) had traveled out to Colorado to see him, and recommended that I pay him a visit. I got in touch with him the next day to find out when we could schedule a trip to Denver, only to learn that he has a second home in Scottsdale just 10 minutes from our house and was going to be there three days later. Hey thanks, universe. I saw him for a few days in a row while he was in town and then a few weeks later when he returned.

While I can't say that the treatment really helped my headache, it did feel good for him to confirm the "stuck" feeling I'm experiencing in my upper c-spine (which feels more severe as my pain increases). I felt a definite release of pressure when he adjusted my occiput, though any sense of relief was relatively short lived.

Upper Cervical and TMJ Physical Therapy
After seeing Dr. Vetanze, I knew I needed to keep pursuing (I mean, I guess I haven't really stopped?)  the biomechanical problem in my cervical spine. Aside from my C1 and C2 no longer being severely unstable (because of the fusion), I don't know what the problem is there, but I know it's driving my pain. I just know it is. It doesn't mean that other treatments and modalities aren't worth pursuing, but I just can't give up on this root problem.

So I dove into this beach read: Temporomandibular Disorders, Head and Orofacial Pain: Cervical Spine Considerations, which led me to learning about the author, which led me to finding the only certified Cervical and Temporomandibular Therapist in Arizona. I saw Andy Moriarty for an evaluation last week. After examining me and getting the scoop on all I've been through, he felt like a lot of my pain and stiffness is coming from above and below my fusion (which he agreed was an absolute necessity to have gone through with). Because my case is kind of the polar opposite of straight forward, it's hard to know just yet what the treatment game plan will be. We'll have to kind of take it one session at a time and see how I respond to each visit. I have several more appointments with him this week. He seems optimistic, so I'm taking his lead.

This isn't the first PT I've seen who specializes in this TMJ/upper cervical dysfunction. Two summers ago, we were traveling to Austin to see Mark Strickland and the dentist who works with (Andy knew exactly who Mark was too) but my anatomy is so different post-neurosurgery so that's why we're still hopeful this could help.

Over the last few years, I've tried all different kinds of medical marijuana to help with my pain (which I've written about before), but when I saw Dr. Vetanze, he recommended a CBD product that he's had a lot of success with and recommended I try (to help relax my muscles while I sleep, if nothing else). I tried a few different doses of this oil (which is totally legal and can be ordered online from any state without a medical marijuana license, FYI) but didn't really feel anything (other than tired). If you have trouble sleeping though, from pain or otherwise, I'd definitely give it a shot.

I also used this topical cream, which is basically like an icy-hot type product with CBD in it. Tip: Wash hands well after and avoid learning the importance of that the hard way.

In early spring, I had a neurology appointment with Dr. Dodick's PA, Kathryn Barr. This was our first time meeting with her, and she was amazing. She sat with Craig and I for 2.5 hours and went through my entire treatment history to see if there was anything at all that had been overlooked or was worth revisiting.

The first order of business was to order an MRA and MRV of my head (like an MRI to look specifically at blood flow and images of normal and diseased blood vessels). She seemed surprised I had never had them done before. I went in to the hospital a few Sundays ago to get the tests done, but, fun fact: apparently my increased pain has made me incredibly claustrophobic (despite having megadosed on CBD oil beforehand in an effort to mellow me out) and have panic attacks when this little thing goes over my face before going into the machine. So my 90 minute test lasted about 15 seconds and now I have to go back and get it done under sedation. Hah.

*side note: My friend was surprised that Craig stood by to document my anxiety when I showed her this photo. So I'll clarify here - this is a stock image I found of what an MRA/MRV setup looks like. 

Kathryn also wanted to revisit Botox, which I had initially tried four years ago with Dr. Dodick. She thought it was worth injecting a few additional sites that have been known to help with headaches, like my masseter (i.e. cheek) muscles, which I didn't have injected before. So last week I went in for my first round, which will be repeated in another three months, and then another three months after that. Here's a breakdown of the injections:

200 units from lot C4375C3, expiration date 10/2019, were injected in the following pattern:
5 units in the procerus.
5 units in 2 injection sites in the corrugators
20 units in 4 injection sites across the frontalis.
20 units in 4 injection sites in the right temporalis.
20 units in 4 injection sites in the left temporalis.
10 units in 2 injection sites in bilateral parietal region.
20 units in 2 injection sites in bilateral masseter muscles.
15 units in 3 injection site to the right occipitalis.
20 units in 4 injection sites in the left occipitalis.
15 units in 3 injection sites left suboccipital/lower trapezius,
follow the pain
20 units in a total of 4 injection sites in the cervical paraspinal muscles
30 units divided evenly across a total of 6 injection sites in trapezius muscles

She also wants to try an auriculotemporal nerve block, which can sometimes help pain in the temporal region. That procedure's not scheduled yet though.

So friends, there you have it. A full time job, didn't I tell you? (And ready for my career change any day.)

But I'll sign off on a happier note with a photo that I captures all of the love overpowering the pain. Every day... no matter how much it hurts.

This guy is my whole world. Each night, without fail, when we get into bed and before we fall asleep, he asks me: Can I get you anything? I already have my glass of water, and my kindle, and my ice pack, so it's really more symbolic than anything. I know he would do anything.


  1. Oh my gosh, Katie, sans the fusion, you could be writing for me! Your "So how am I doing?" section captures the emotions so well. You are an excellent writer! We are now five years into my chronic head pain journey. Next week we're off to Johns Hopkins. After all, there's always hope, right? I thought my wonderful, amazing husband was the only guy handling such a drawn out, mystifying, frustrating, emotionally painful, asset draining, life changing experience so well. Apparently there are two guys like this! Keep holding onto each other and your hope! Laureen

    1. Thank you, Lauren, for leaving such a thoughtful comment (and sorry for the delayed response!) .. I'm so sorry that you've been on a similar path but it sounds like we're both VERY lucky to have such loving partners to support us through it all. How did your appt. go at JH? Have you been diagnosed with occipital neuralgia? Feel free to email me if you'd like at kathrynLdalton@gmail.com.