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!