Last summer, as millions of kids were headed off to camp, I was preparing to go too. I bought new pajamas, I stock piled magazines, and had a list of movies to watch while I was away. But I wouldn't be zip-lining or doing potato sack races. I was going to Headache Camp...somewhat of a last resort to control the Chronic Migraines. The only medal or badge I hoped to earn by the time I left was a life with more manageable headaches.
I would be spending 3-7 days at the Jefferson Headache Center in Philadelphia. Affiliated with Thomas Jefferson University and Medical College, this Center is only one of a handful of its kind in the US that specializes in Migraines (not just pain management) and has a dedicated in-patient program (that my friends dubbed "Headache Camp"). My neurologist said most patients leave with significantly reduced pain levels although their goal was for me to leave pain-free. Some patients get relief with only need one treatment, while others come back once a year for a "tune-up."
The admission process to get into Headache Camp was as rigorous as getting into Yale. It wasn't until after I'd spent years trying to control my Migraines with my Headache Specialist at Georgetown University Hospital in DC, did she finally say it was time for a trip to Jefferson. My initial consultation with the Center included a full recital of my medical history plus loads of paperwork, a 400 question personality test (called MMPI-2) and a one-hour session with a psychologist. The Center believes in treating the whole person and not just the disease, hence the therapist and personality test. Also, depression and anxiety can be comorbid with Migraines. Delving into your personal background will only help in the treatment process. After a four hour evaluation, the team at Jefferson agreed that a stay at Headache Camp was the next step for me.
Excited to get the party going, I arrived prepared to stay as long as it took to battle the Migraines. My friends armed me with a handmade blanket, a horseshoe necklace for good luck and coloring books to pass the time. But I didn't have too much time to get cozy. Initiation into camp began upon arrival with the placement of a PICC line in my arm (instead an IV) in order to better administer the drug cocktail I would be taking. At any point, I was on 6 medications at a time, although it changed daily depending on my body's reaction. The mix usually included meds for anti-nausea (Phenergan, Zofran or Compazine), anti-inflammatory (toradol), an ergotamine (DHE), an anti-epileptic (keppra), and magnesium. I was now permanently tethered to my IV stand, only released for 15 minutes a day to shower and change...
I've been on a combination of all these drugs in some form or another without success. What makes this in-patient treatment program different is adding Lidocaine in the mix to control the pain. Most commonly used to treat cardiac arrhythmia, Lidocaine is an anesthetic. It can be used by dentists for procedures, as a topical numbing agent, and in higher doses as anesthesia for minor surgery. In recent years, doctors have discovered that Lidocaine can be effective in treating chronic neuropathic pain. The drug works to desensitize pain pathways. As my doctor explained to me, the drug gives your brain a vacation, a chance to forget that it constantly fires migraines. The desired effect would be like rebooting a computer.
Sounds great and makes sense. Until the doctor tells you to be prepared for the HALLUCINATIONS. Yes, you read that correctly. At therapeutic levels, Lidocaine causes hallucinations. This is why the treatment is considered a last resort, after everything else has been explored. I had no idea what to expect, but bring on the dancing bears and purple dragons if it means less pain!
Before the Lidocaine fully took hold, I had a few days of rest. Sleep is a popular sport at camp. Most of us are champions at home and being here is no different. The majority of the time was spent in my room listening to music, writing and watching Revenge. A dear friend of mine who lives in Philly visited every day. We went through a National Geographic magazine and decorated my room with tigers from Bangladesh and palm trees in Puerto Rico. My loved ones became my pen pals through email status updates and I enjoyed reading their words of encouragement.
Once a day, the camp counselors rallied us together for a class (assuming I could manage it). Each day was different- Chair Yoga and classes in Coping with Stress, Family Interactions and Dietary Needs. These were great topics and offered all patients a non-judgmental place to share their feelings or fears. It also gave me the opportunity to meet other Chronic Migraineurs for the first time. It was amazing to talk to someone who basically had a similar path in getting to Headache Camp. Occasionally the psychologist would stop by to check on my progress and see how I was handling the medications, hallucinations and my expectations. It was nice to be in a place where I felt understood.
Getting Down to Business
As the days progressed, so too did the doses of Lidocaine. By Day Three I began to see shapes and colors, whether my eyes were open or closed. I became dizzy very easily and I had a bed alarm requiring me to ask for help when getting out of bed. On Day Four, I started to slur my words and have extremely vivid dreams. Day Five became melancholy and emotional. Day Six, I was giggly but didn't make much sense, which was frustrating. I also started seeing more complex hallucinations than just shapes. A man in my room disappeared after I told him he wasn't welcome and a pack of menacing wolves visited me another night. Not gonna lie, it was a dark place toward the end of my stay.
But I knew there was a reason for going through this, the potential to reclaim my life. Before coming to the Center, I lived at a pain level of 7 (out of 10). Over the eight days at Camp my pain fluctuated, which was normal. On Day Five I had a breakthrough after my doctor performed an occipital nerve block. I was immediately teased with a complete lack of pain! The dreary fog that had clouded my head for years had lifted. I couldn't help but think about the possibilities of returning to normal. Maybe I could go back to work soon. I felt a peace inside me. I laid in the dark and enjoyed the Lidocaine fueled shapes and colors swirling around me for the first time. And I drifted into sleep.
Hours later when the nurse woke me to perform an EKG, my happy blissful state vanished. The pain returned in full force. Tears rolled down my cheeks, pooling in my ears as I laid there hooked up to the monitor. I was trying to keep it together, but I unnecessarily blamed myself for the relapse. What was worse- knowing what it was like to live without pain for a few short hours or to never have had that experience at all? Sometimes life just isn't fair.
The temporary relief was promising to my doctors and my drug cocktail was increased in hopes of recreating a pain free environment. While the headaches never completely subsided again, my pain hovered around a 2-3 level by the time I was discharged. To me that had a potential to be life-changing.
I was nervous to go home, not knowing what my new normal would be. During my time at Headache Camp, I met 2 people with extremely different stories that made me wonder what my fate would look like when I left. One man had Migraines for 15 years. He had been at the Center for 2 days when his headaches broke. He had complete relief for 48 hours and he was going home that day. In contrast, I met a woman who had been admitted to the Center six times with her most recent stay 3 months ago. She said a week-long visit was the only thing that helped her to control the pain. I'm an optimist, but I didn't expect a miracle for me. I would count my treatment a success if I ended up somewhere between these two extremes.
The week after I left Jefferson, my emotions were a mix of hopeful and frustrated. If a headache hit, I could take Relafen and get relief- a huge improvement over needing triptans and opioids. The mental fog stayed away, which made me giddy. On the other hand, I was having a hard time with the Lidocaine substitute I was given, mexilitene. I felt jittery, like my skin was crawling and I stayed awake for days on end. My neurologists from Georgetown and Jefferson consulted on my medications so I could get some relief. But within a week, the sun began to dim and the fog rolled in. The occasional headache became chronic once again. My hopes of returning to work slowly slipped away.
Overall, I would say that the Migraines have changed positively. While they are just as frequent, the severity has decreased. I used to live at an average pain level of 7 and now I'm more comfortable at a new 4-5 level. Of course, I still have daily flare-ups where the pain can go up to an 8 or 9 and I work hard to use yoga and deep breathing to get through it. I've continued Botox therapy but find I still need a trip to the ER when it starts to wear off.
Headache Camp was not as successful for me as the doctors had hoped. Apparently I'm a tough nut to crack. They say some patients see better results with additional treatments. Think of it as chipping away at the layers. I've only scratched the surface. So on February 3rd, I'll be returning to Headache Camp for round two.
This is just my story. Clearly I believe that it could do some good, or I wouldn't be going back. I'm also aware of how scary it sounds, having all of those drugs pumped through you and causing you to see castles on fire and a marching band rehearsing in your room. In the grand scheme of treatment, I try to balance alternative methods of healing along with medication. The Jefferson Headache Clinic may not right for everyone, but I wanted people to know it's out there. It's not a quick fix or a quick process (I didn't even go into the maddening insurance issues).
I'm cautiously optimistic for my stay next week. I've learned with any treatment to go in with an open mind but not have unrealistic expectations. Maybe one day I'll be pleasantly surprised. So wish me luck and I'll follow-up with my adventures from Headache Camp.
How much has your migraine disease changed or evolved over time?