Headache Camp: Round 2
I previously wrote about an in-patient treatment program at the Jefferson Headache Center in Philadelphia. I fondly refer to it as "Headache Camp." My first trip was in August 2013 and I’ve returned twice since then, most recently in March 2015. While I’ve been dying to tell you about my last two experiences, I had to wait while an insurance claim battle played out, which has now been resolved.
During my first visit at Headache Camp, I was given Lidocaine in addition to five or six other drugs all at once to combat the Migraines. This time was different. Lidocaine was replaced with Ketamine. Like Lidocaine, Ketamine is also a dissociative anesthetic often used for surgery. It’s an NMDA receptor antagonist, which causes hallucinations. Doctors have found at therapeutic levels it can do wonders for chronic pain patients. More likely you’ll see it used for burn victims, patients with phantom limb pain, and other intractable pain patients that have not responded to traditional treatment. Ketamine works to block pain signals in an effort to reset at a lower baseline. The pain management team, overseen by an anesthesiologist, and my neurologist were involved in my daily care.
Even though I had one camp session under my belt, I was scared. Ketamine is a serious drug. But I was hopeful that it could give me relief. On my first day, I waited in the admissions area for my bunk to be ready and I quickly spotted a fellow camper. She was very pale, and although it was winter, it seemed like spending time outside would be painful for her. She wore small, thin sunglasses on her consistently pained face. Even with ear plugs in she winced every time the door open or closed shut. She looked so miserable that I didn’t want to disturb her and engage in conversation about her Migraines. I just remember wishing that we would both find some semblance of relief very soon.
Once in my private room, I was poked, prodded and questioned for hours by curious med students, my neurologist, a pain doctor and his nurses. After rounds of consultations, I was finally given an IV to start the pain treatment. Let the relief begin!
As the nurse began to administer the first dose of Ketamine, I asked what it would feel like. She said it would be like I was drunk, but without the hangover. Having had some experience in that area, I thought that might not be so bad. And then wham! I felt like I'd had a martini on an empty stomach. Two hours later when the dose was increased, it was exactly like I had 5 martinis. I’m guessing that a lot of kids go to camp and experiment with recreational drugs or alcohol, and apparently Headache Camp was no different! With each increased dose, I thought for sure I would black out, but I eventually got used to it. I had double vision early on, but no nausea. I peacefully drifted in and out of sleep without the horrible, vivid nightmares I had on Lidocaine. By day two I started hallucinating, but again it was pleasant.
Headache Camp had just turned into the college years. I slept a lot, felt drunk, and tried really hard to focus and sound intelligent when the doctor came by…just like you do during an 8am lecture with a hangover. That’s not really a condition you want your Mom to see you in, but my poor Mom had a front row seat. I had vowed to ask for more help (see Help (Not) Wanted), so she stayed with me for part of my last two treatments. I found it extremely comforting to wake up, knowing she would be sitting there knitting. I can only imagine the crazy things I said to her in my zoned out state, considering I emailed one friend saying that, “if you call me, I’ll read your palm.” My Mom has eloquently written her version of the events that I can’t wait to share soon.
I had another amazing caretaker while in Headache Camp. Halfway through each stay, my boyfriend relieved my Mom of her babysitting duties. He engaged with the doctors and asked questions so that he knew how best to take care of me at home. He listened to me and was my advocate. During my most recent visit, he gently guided me back to reality when the effects of the Ketamine became overwhelming. For a brief period of time, I felt unsafe and scared. The doctor reassured us that it was the build-up of the Ketamine in my system and adjustments to my medications were quickly made.
Except for that one hour where I thought I was losing my marbles, I did enjoy the constant buzz and euphoria of Ketamine. But I wasn’t there to get high, I was there to get better. I stayed focused on the healing process. I did as much gentle yoga, stretching and walking as I could. I listened to music and used essential oils. I ate healthy, except for the daily cupcakes my Mom brought me. It’s hard to explain, but this felt less toxic than the Lidocaine treatment. I would occasionally get breakthrough pain that was managed with additional drugs, but overall my pain level hovered around 2-3 - a huge improvement!
Ketamine Headache Camp lasted about 6 days for each visit. The reason I went back a year later for a second Ketamine treatments was because I felt like I got relief for about 6 months after the first stay. The doctors say that after a second round some patients experience relief longer than the last time. After both stays, I notice that the severity of the Migraines decreased and I used less medication to manage them. I now have a Ketamine nasal spray at home to use for acute pain. It doesn’t completely stop the Migraines for me, but it is another tool to use to combat the pain. Actually, it’s probably the most effective tool I’ve tried.
In the coming weeks, I’ll share with you how I’ve adjusted to life after both Ketamine Headache Camps. I’ll also share my Mom’s beautiful story of taking care of me in the hospital. I know that Ketamine sounds scary and many people can be skeptical. I’m happy to answer questions. Please read “Ketamine for Migraine Management” to get information on how Ketamine works. More studies are needed before this becomes a widespread, accepted form of treatment for Chronic Migraine patients. I believe that in the right setting, with the proper oversight it could significantly improve the daily lives of certain patients.
Have you shared your migraine story with us yet?