Second thoughts, second opinion

As soon as I agreed to go inpatient at Jefferson Headache for lidocaine infusions, I began to have second thoughts. At first, I just hated the idea of being cooped up for the first week of June. I spend a lot of time outdoors in the summer. I knew I’d feel like a hostage, especially if the weather was nice. But then I started to poke around online and read accounts of this treatment, and my doubts became serious, not just based on personal comfort.

The infusion starts with a picc line inserted in an arm vein that snakes into the heart. I’d be connected to it the whole time, except for 15 minutes a day for a shower.  When I read how high amounts of lidocaine often cause hallucinations, I decided I only wanted to do this if it had a strong chance of reducing my headaches significantly.

Don’t get me wrong—I used to willingly hallucinate often in my 20s and I enjoyed it mightily. But tripping in cemeteries with a band of merry pranksters is a far cry from hallucinating alone in a hospital bed. From conversations with my headache group on Facebook, I started to see this as a treatment of last resort, something you’d consider if you had one constant headache that no medication would eliminate. That’s not the case for me. So I decided to get a second opinion.

I’d cancelled my appointment with Penn Pain Medicine when I went back to Jefferson, so I scheduled a new one. They looked at my MRI and pointed out all the funkiness in my cervical spine that could be causing the pain. They suggested that what I really have is occipital neuralgia, “result of compression or irritation of the occipital nerves due to injury, entrapment of the nerves, or inflammation” (WebMD). I’ve read a lot about this and thought that was probably accurate. My spine docs had been treating the nerves in my neck that communicate with the occipital nerves--why not just treat those nerves directly?

They want to do an occipital nerve block, which would hopefully block the pain in that actual nerve instead of the medial branch nerves in my neck, the way the rhizotomies did. They asked me to collect all my medical records and deliver them this week (if I have them faxed, they go into the Penn system at large and can take forever to get to these docs). I see them again in a few weeks, at which time they’ll will try this nerve block.

Meanwhile, the Jefferson doc had prescribed Cymbalta, which is a SSNI. It works for both depression and pain. It’s not fully in my system, but my headaches have been pretty minimal for the last few weeks. I’ve even had days with no headache at all. But I will say that since school ended, my life has been incredibly low-stress. I just finished a millionth draft of a novel I’ve been working on for many years. I spend time on my beautiful porch, in my backyard, in the woods, and in the kitchen.

I’ve been tracking my headaches, and they’ve been triggered by the following: a too-loud and tinny microphone at a reading at the Free Library, chaotic time with family, weird bright spotlights at Starbucks, and a stimulus overload at my niece’s dance recital. When I’m in my quiet house, I’m almost always pain free.

I’m teaching second summer session starting in July. That will be the real test. I am so done with teaching while in pain. By then I’ll have had the occipital nerve block, the Cymbalta will be in full swing, and the Jefferson doc may have administered the full migraine protocol of 31 shots of Botox all over my head (which the Penn docs want me to get).

May has been a great month overall. I’m very psyched about this book. I have a few people reading it, and then based on their feedback, I’ll do some more revision and then start looking for an agent.

But if I go back to teaching in July and the headaches come back full force, the Jefferson doc says I can go inpatient the week after summer session ends. And I’ll do it, no matter how beautiful the weather. Pain is ruining teaching for me. For more twenty years, my classroom was my happiest place. With a headache, it’s torture.

Inpatient

Today I saw a new doctor at Jefferson Headache, and at the beginning of June, I'm going inpatient for five days.

I'd asked to see the director at Jefferson for a consult, so they gave me an appointment with a fellow (I saw a different fellow there last year--he couldn't help). I thought I'd see the fellow, who would call the director in, who would tell me they still couldn't help me but give me some ideas on where to go next (he wrote the diagnostic criteria on cervicogenic headache).

Instead, I met this doctor, the fellow, who specializes in cervicogenic headache (very rare), and she spent well over an hour with me going through my history and offering treatment ideas. She finally decided that she wanted to bring me in for five days (Jefferson and other major headache clinics do this a lot). I'll get a picc line and meds, including lidocaine, dumped in until something works. I'll also take classes on posture and nutrition, take yoga, see a psychologist and a psychiatrist.

I'm bummed that this is happening in June and not January. The thought of being inside for five days when it's nice outside makes me want to scream. But the thought of more teaching with headaches makes me want to scream more, and I'm on break for May and June, then back in the classroom in July. So it's now or never, or at least not until winter break next year.

The doctor was excited by the challenge of working with me. She has migraines herself. I've never worked with a doctor who has pain (or at least they've never told me). It's of comfort to me. She says Jefferson is always doing trials of new treatment/meds, and if I decide to work with her, I will have access to that. Right now she is a fellow, but they are thinking of hiring her for real as a cervicogenic specialist. She showed me a presentation she gave recently, all kinds of graphics. These headaches are very very complicated (ALL headaches are complicated). The area where mine are generated is such an intense mix of muscle, nerve and blood vessels. She's super into trying to fix it.

I had an appointment lined up with Penn Pain Medicine, but I'm canceling it. I'm going to do inpatient and give this doctor a chance. I'm looking at the hospital as a writing retreat. I can have visitors (except Buddy, which will be hard. I mean really hard). I think if I didn't do this and continued with the headaches, I would always wonder.

The pain has been better in the last few weeks, mostly because of the weather. I think the cold made me tense up, and the grey was grinding me down. Now when I look out any window of my house, all I see is green. I am scratched up and achy from gardening, but that feels good. I'm looking forward to finishing this novel revision in the next few weeks and getting feedback on it. For the next month I plan to lie really low--gardening, writing, hiking, hanging out with my animals. I want time to go by really slowly.

But the headaches are there, every day. I feel crazy when I go over my history with a new doctor because I've tried so many things that haven't worked. It's really been crazy.