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Monday, October 27, 2014

Ketamine recap + next steps

I'm back! Apparently I needed to take a little break from the recent stream of updates. Truth be told, I've been so sick of talking, reading, writing, thinking about all things headache (nevermind FEELING) that writing a blog post about it just hasn't been able to maintain its position at the top of my to-do list. Maybe that carries more weight if I tell you what is on my daily to-do list: take Charlie to the park, relax, maybe work out, have lunch, relax, take Charlie for another walk, make dinner, relax. See what I mean?

Selfishly, though, I always feel better after sorting through my thoughts and breaking down the details of my treatments. I think it helps me to move forward with a clearer mind.

So here we go...

I started the Ketamine infusion at Freedom Pain Hospital 2 weeks ago today. In short, it f-ing blew. But I'll include the longer version of that too.

The initial plan was to start with 3 days of treatment, provided I tolerated the first and second days. When I showed up on Monday morning, I wasn't totally sure what to expect. I knew the infusion itself would last a few hours and I'd be administered a cocktail of medication to help offset some of the less enjoyable effects of Ketamine and make me more comfortable (i.e. sleepy).

It didn't take me long to decide that I really hated the feeling of being on Ketamine, but I was (and still am) willing to endure any amount of temporary discomfort if it means long-term relief from my head pain. I felt nauseous and dizzy. If I kept my eyes open, the clock hanging on the wall multiplied into a wall of clocks and the blinds covering the windows across one wall of the hospital room were melting into each other. When I closed my eyes to get away from that, it was more dizziness and bright colors. When I did manage to drift in and out of sleep, my dreams were...well, probably the kind you'd expect to have on while on a psychedelic drug.

They explained to me that patients can experience different acute responses to ketamine. For some, it's a more euphoric, relaxed state...for others, it's a more agitated, anxious reaction. I definitely fell into the second category.

Breakdown of Monday's infusion:
-0.9% NaCl (Normal Saline IV fluids) approx. 725 ml
-Ketamine 63 mg IV
-Midazolam (Versed) 3 mg IV (to help me sleep)
-Ondansetron (Zofran) 8 mg IV (anti-nausea)
-Promethazine (Phenergan) 12.5 mg IV (anti-nausea)

When it time for Craig and I to leave on Monday afternoon, I was still feeling pretty out of it. After what can only be compared to a super drunk car ride home, I passed out on the couch until 6 or so. As far as my head pain, I noted that it felt a tiny bit better (maybe half a number?)...but honestly, it was difficult to even gauge simply because of how awful I felt in general from the infusion. I also hadn't eaten since the night before but the Ketamine had wiped out my appetite, which I'm sure wasn't helping my body to recover.

Monday night, Craig decided it would be a good idea to fly my mom out the next day from Boston, since he had to go out of town later in the week and it was pretty clear that this was really wiping me out.

On Tuesday, I went back in for day #2, feeling optimistic that the Ketamine could still work its magic. Even though they upped the dose of Ketamine, Tuesday was a much better day for me, simply because I slept through most of it. I certainly didn't feel good when the infusion was over, but totally different than the first day. As far as my head was concerned, I wasn't feeling any worse and Dr. Strand had explained that even if I were to experience relief, it may not be immediate.

Breakdown of Tuesday's infusion:
-0.9% NaCl (Normal Saline IV fluids) approx. 400 ml
-Ketamine 90 mg IV (increased dose)
-Midazolam (Versed) 3 mg IV
-Ondansetron (Zofran) 8 mg IV
-Metoclopramide (Reglan) 10 mg IV (anti-nausea)

On Wednesday morning, they decided to up my Ketamine dosage even more and increase the infusion from 3 hours to 4 hours, since I had responded pretty well on Tuesday. Like I mentioned in my last post, I don't exactly fit the mold of a migraine or CRPS patients (prime candidates for this therapy) so we knew my dosing protocol would be a bit of a guessing game.

And as it turns out, we were probably a bit aggressive with the dosage on Wednesday because it was the worst day for me. Not only had the previous day's drowsiness turned to alertness, but I was even more nauseous and every minute that passed literally felt like at least 1.5 hours. I think I asked my mom what time it was (clock was still dancing all over the wall) 5 times in 15 minutes. I remember thinking to myself...how do people do this for pleasure?

Breakdown of Wednesday's infusion:
-0.9% NaCl (Normal Saline IV fluids) approx. 600 ml
-Ketamine 140 mg IV (increased dose, 1 hour longer infusion)
-Midazolam (Versed) 4 mg IV
-Ondansetron (Zofran) 8 mg IV
-Metoclopramide (Reglan) 20 mg IV

Then late Wednesday night, I developed the worst headache I've ever had in my life. Not just awful pain, but scary pain. It felt like there was a drill going through my temples. I just laid there in silence because I was in too much pain to cry. Craig helped me breathe my way to sleep and when I woke up on Thursday morning, I was adamant that the Ketamine trial was over. We went back to the hospital that morning to chat with the docs, who were totally supportive and understanding of my decision to stop. They agreed that we'd ideally liked to have seen some substantial progress with pain relief by day 4 anyway.

I knew all along that this was all a big experiment and think I did a pretty good job of staying hopeful while tempering my expectations. Despite my cautious optimism, though, I'm always secretly praying that whatever new thing I'm trying, practitioner I'm seeing, appointment I'm headed to is THE game changer. And when it's not the game changer, even though I can still say, "well, at least we checked that off" (and mean it!), it's hard not to feel defeated.

Luckily, my mom was there through the weekend (armed with some HomeGoods retail therapy) to help me take my mind off that.

It took me about a week to get to feeling back to normal (i.e. having a huge appetite and energy to get in some kind of physical activity, even if with my baseline headache). Since then, I've gone back to experimenting with vaporizing medical marijuana. So far, I've found one strain that seems to (at least sometimes) take the edge off my pain. It makes me incredibly sleepy so I typically use it at night before bed and am able to start the next day with a bit of relief. Last night, my marijuana sous chef (i.e. best boyfriend in the world) infused some coconut oil with this new strain so I'm going to whip up another batch of my extra special brownies today in hopes of recreating that lowest-pain-in-two-years Sunday that I had a month ago.

Last week, I also started seeing a new PT who was referred to me by the PT who I started PRI rehab with last year before going to the Hruska Clinic in Nebraska. It's been a few months since putting my PRI glasses and mouthpiece in so I'm giving it another go.

And last update...

A few weeks ago, Craig came across this article about former NFL player Jim McMahon. If you're not familiar with his story, Jim had spent the last few years suffering increasingly debilitating headaches and neurological symptoms before a life-changing experience with a cranial-cervical specialist. By using an upright MRI (as opposed to the traditional, recumbent position), they found that a misalignment of the top two vertebrae was causing a blockage of his cerebral spinal fluid (a condition coined "cranial cervical syndrome"). I'd check the article out, but long story short, he underwent a noninvasive procedure to to re-align the C-1 and C-2 vertebrae (the Image Guided Atlas Treatment) and...got his life back.

Months ago, I underwent some ongoing treatment was a NUCA chiropractor (upper cervical) without relief...but we're thinking that it could be worth seeing someone who specializes in this Atlas-Orthogonal Technique. There are a few docs in Arizona who do, so we made an appointment with Dr. Trombetta for this afternoon!

Sunday, October 12, 2014

A few days on opioids and gearing up for Ketamine day #1

Well, it's been a rough few days for days, and really weeks, for me. Up until mid-week, I had continued experimenting with different dosages and strains of my medical marijuana but still hadn't been able to recreate my magical Sunday (two weeks ago now).

Wednesday evening, Craig and I met with Dr. Dodick at Mayo to discuss his opinion on the ketamine infusion and see if there is anything else he thinks I should be trying. We both really love Dr. Dodick and appreciate not only his perspective and expertise, but his empathetic and respectful way of engaging in conversation with us. He gets it. So even though he was honest in sharing his general apprehension towards ketamine therapy based on his own experience (which included risk of toxicity and questionable efficacy in treating pain, specifically headaches), he agreed that for me...anything is worth a shot.

I've explained this many times before, but Dr. Dodick is confident that the reason for my initial pain (whatever it was..inflammation, ligament instability, etc), is no longer causing my headache. He believes (and I agree with him) that my headache has become centralized, meaning that it's likely no longer a matter of peripheral input. Chronic pain can change your brain chemistry and even the wiring of your central nervous system. It also creates muscular tension (for me, in my neck, traps, upper back), that can then feed back into the cycle of pain. The musculoskeletal dysfunction then can become a secondary contributor to pain, but not necessarily respond to soft-tissue treatment simply because it's actually more of a symptom of the pain than an underlying cause. That's why even though I'll continue exploring all approaches to treatment, the focus of reducing and eliminating my pain has shifted somewhat.

Wrapping my head around the mechanism of central pain hasn't been easy. When you sustain an injury that causes pain, you want everything about it to be tangible...the diagnosis, the pathology of pain, the prognosis of treatment and timeline to recovery. But there's really nothing about this that is straightforward...which can make the process of seeking treatment feel like a series of fingers-crossed shots in the dark....each failed attempt taking a serious toll on my dwindling hope. Lucky for me, Craig still tells me (on an almost daily basis) that if I can't find it in myself to believe that my headache will someday (hopefully some day soon) be gone and my life will be whatever I want it to be, I just need to believe that he believes. And somehow, that is easier for me to do.

Back to the appointment. After rehashing the list of medications I've been on to date, we realized that I've never actually been prescribed a pain medication. The list of drugs I have been on, though targeted at my pain, has included anti-seizure meds, anti-depressants, anti-inflammatories, etc., but never opioids (i.e. narcotics). Opioids are used to treat pain by binding to opioid receptors in the brain, spinal cord, and other parts of the body and then reduce the sending of pain messages to the brain.

Dr. Dodick proposed a trial of an opioid, Hydromorphone (i.e. Palladone or Dilaudid), for just a few days before deciding whether to move forward with the ketamine. The plan was to start a low dose of Hydromorphone Thursday morning, take it every 6 hours, up the dose Friday morning and then by Friday afternoon, IF i was feeling any better, I'd continue taking it for a few more weeks and stick the Ketamine plan on the back burner. If my pain wasn't down, I'd stop taking it and start the Ketamine this Monday per our original plan.

To be clear...I hate the idea of being on medication of any kind, as many people do. The only thing I hate more, though, is having a headache every waking second of my life. So I was on board and started with Hydromorphone Thursday morning, prepared for the expected drowsiness but going into it as optimistically as I could. Craig knows how hard it is mentally for me to pop pills, so to help get my mind right, he's constantly reminding me of how strong and resilient my body is...how well I nourish it with the most nutrient-dense foods possible and how well it will respond and bounce back from pouring any amount of pharmaceuticals into it.

Unfortunately, though, the Hydromorphone provided no pain relief and I ended up feeling like absolute shit on Thursday and Friday, Saturday, and still a bit today as it works its way out of my system. Groggy, dizzy, nauseous, the whole sha-bang. So, the plan now is to start the Ketamine infusion at Freedom Pain Hospital tomorrow morning. I'm scheduled for 5 days of treatment but we should know after tomorrow's session whether there's value in continuing the rest of the week. I'll try updating tomorrow afternoon depending on how I'm feeling.

Saturday, October 4, 2014

"He who has hope has everything."

I've got a few updates to relay this weekend and hopefully will have even more in the next few days and weeks.

As explained in my last post, I underwent some occipital nerve blocks (field block) last Friday at Freedom Pain Hospital. I was instructed to monitor my pain over the next few hours, like I've done with all previous nerve blocks. Unfortunately, I didn't experience any changes in my pain level...although my head DID go numb (which hasn't been the case with previous occipital nerve blocks). So the positive is that now I can at least cross the occipital nerve off the list of potential pain sources.

Now for some good stuff. Get ready!

Last week, I met somebody rehabbing at EXOS and we got to talking about some of the overlap in our symptoms and treatment paths. Ryan has been on a truly incredible journey that started 8 years ago with 5 brain surgeries (including a craniotomy) and has included a host of additional health issues over the course of time (including migraines). He shared with me that after his last brain surgery, doctors told him that his life would be very limited. Through what I only imagine to be the most grueling and character-defining process, he defied the prognosis his doctors gave him and set out to regain his life, which included learning to walk and talk again. Quite honestly, hearing his story makes my the journey I've been on seem like an f-ing walk in the park. But in the few conservations we've had, I've felt so inspired by his mindset, which embodies hope, perseverance, and a refusal to quit.

After chatting about my (unsuccessful) experience a few months with medical marijuana (sublingual CBD), he suggested that I give it another shot but this time try a strain containing THC. I have my medical marijuana license, but really had no idea how to go about figuring out what, how much, and what method to try. Thankfully, he offered to help me navigate the process. Last Saturday, Craig and I were sort of "rained in" (sorry, it's an Arizona thing). My plan was to get a vaporizer but I hadn't been out to get one yet, so we decided to take on a fun little rainy day project of making me some special brownies. (To our credit, it's a nice indoor activity.) After a nerdy amount of research, we had successfully created our pot-infused coconut oil and I whipped up these bad boys. Special or not, they're delicious and you should make them. (note: naturally sweetened with dates but I omitted the vanilla stevia, and replaced with pure vanilla extract and a little coconut sugar).

Trying to err on the side of caution and monitor my response, I ate just a few little pieces Saturday evening. I felt tired, but no changes in my headache. Sunday morning and mid-day, I ate a few more. Feeling sleepy again, I laid down to take a 20 minute nap. When I woke up, I definitely felt different. Craig and I left for a mountain bike ride and I knew from the second I got on my bike that something amazing was happening. I took off the on the trail and for the first time in a long, long, LONG time didn't feel totally wrapped up in my head pain. It was still there, but the pain low enough that it felt like background noise. After the first segment of our ride, I hoped off my bike. When Craig caught up to me, I was burying my face in my hands and to my own surprise, was crying....out of HAPPINESS. I can't describe how incredible it felt...for both of us! The last day that my pain was that low was October of 2012, for one day after a treatment I had with Anna. Two years ago!

I knew realistically the relief was temporary, but in the hours that followed, I was 100% okay with that. Mentally, I've struggled for a long time with believing that my body was capable of not having a headache, and this episode (which lasted into Monday morning before creeping back to normal levels mid day) was the glimmer of hope that I needed. It solidified the notion that less pain was possible.

Despite eating a fair number of brownies the next few days and subbing my regular coconut oil in my morning smoothies with my new special coconut oil, I wasn't able to recreate the effect. That wasn't too surprising though, because I knew that ingesting edibles would be much harder to titrate and regulate dosage. Later in the week though, I purchased a few more types of marijuana and started using a vaporizer pen. So far, it's definitely making some impact (taking the "edge" off my pain, if that makes sense), which is awesome, but I need to keep experimenting with different combinations and amounts to figure out what will work best. To anyone reading this, it might be difficult to appreciate just how significant this is for me...but as a reminder, no medication, no invasive procedure, no therapy that I've tried in the last couple of years has provided ANY (ANY!) relief.

This past week, I also had my cardiology and pain psych evals to clear me for the ketamine infusion therapy, which I was supposed to start this coming Monday, but Dr. Dodick at Mayo wants me to wait until after my appointment with him this coming Wednesday so we can chat more about it. Assuming he gives me the go-ahead, I'll now be starting the ketamine a week from Monday. I'm scheduled for all 5 days but we'll re-evaluate based on my response at the start of treatment.

Finally, Craig and I decided that since I haven't had much soft-tissue work done in a while, specifically on my t-spine, it might be a helpful complement to some of the other "central pain" therapies I'm trying. I've talked before about the pain-spasm-pain cycle, and feel pretty confident that a lot of the musculoskeletal dysfunction I have going on in my neck and back is a result of being in pain, but I think targeting all parts of the cycle can still be helpful.

I saw Jeremy (soft-tissue specialist at EXOS) three days this past week. I'll leave you with this and apologize in advance if you do choose to look. It ain't pretty.