Every single superstition… crossing my fingers, knocking on wood, etc is in my daily vocabulary more now than ever. Because I’m not used to saying “I Feel Good,” but I do!! It likely won’t last long, but a few more months would be nice. It’s honestly tough to say out loud. The recipients of my words have mixed responses from “that’s awesome,” to “what are you doing different” to “are you thinking of going back to work soon?”
Let me clarify, when I say I feel good, I mean relative to the days or weeks I spend on end in bed. Right now I have more energy, but I am still never without some level of Migraine. Usually a 2-3 when I wake up and averaging a 5 overall in the day instead of a 7 or even an 8. I still need a daily nap of 1-3 hours. So, no, I am NOT considering going back to work at this time. A lot more would have to change.
The question of “what has changed,” is valid. I’ve described in length the in-patient Ketamine infusions I have received from Jefferson Headache Clinic. My last and third visit for Ketamine was mid-October 2015. Something was different this time. Due to timing of my admission, the Ketamine was increased slower than in the past. I think it helped my body to adjust.
I typically get double vision at the highest dose, which I didn’t. I could even tolerate watching a little TV. I always try to be active in the hospital although it’s hard when the meds can make you dizzy. I managed not only to take one or two walks around the floor a day, I even rolled out my yoga mat (under supervision, of course).
My summer had been plagued with non-stop Migraines with aura. Those are the most intense, painful and hard to control. My headache specialist and I had come up with a plan to see if I could get some relief. I would get Botox, four weeks later I’d do a nerve block, same thing four weeks later, and then it would be time for my next Botox. This approach seemed to make a difference, but I still couldn’t knock the auras. My local headache specialist sent me to Jefferson who quickly made an appointment for me to go in for a five-day Ketamine infusion. They say the better you feel when you enter the hospital, the better the outcome. For the first time, I can attest to this.
When I got home, I pushed myself to recover. Within a week, I felt comfortable driving, running errands and taking guests. Previously it was at least a month before I felt like myself. I still need naps and to take my meds and do yoga and meditation. Just because I’m more functional doesn’t mean that I can neglect those things.
I’ve been able to enjoy more dinner parties or visits with friends. I have to save my energy, but I have more of it now. Of course, I’m waiting for the other shoe to drop. After four years of this, I know it will happen. But right now I’m taking full advantage. Maybe that’s not the right approach either. I could be doing too much, therefore inviting the destructive Migraine monster to appear sooner rather than later. I just have to decide day by day what my body can and should handle.
Even if by some miracle this feeling lasted for another year, I wouldn’t even consider going back to work. I’d likely need regular Ketamine infusions, Botox and nerve blocks to maintain the level I am in currently.