The first two days of the trial, I really struggled to distinguish the surgical pain in my head from the headache pain. But on Wednesday the surgical pain diminished and I could tell where I still had pain, and therefore started adjusting the stimulation levels and getting familiar with the ONSTIM unit (that's what Medtronic calls their occipital nerve stimulators). The stimulator replaces pain with a tingling sensation. I thought it would drive me nuts but it was actually fairly pleasant, like a little massage for your head. And once you get the stimulation levels set properly, you pretty much cease to feel the tingling, unless you really concentrate on it. Sometimes, when you move your head or neck a certain way you can feel the stimulation more than at other times, but again, it's not unpleasant.
I found the stimulator to work quite well. I would say my pain reduction was 80%. I could even turn it off for periods of time and residual effects of the stimulation would continue to keep the pain at bay. The funniest thing is that because the nerves being stimulated are responsible for sensation to the scalp, when you have the stimulator on, your scalp is rather numb. That'll take a little getting used to but still, it's a million times better than a headache.
My pain has always been on my left. Unfortunately, once we got rid of that pain via the stimulator, I found that I also have some pain on the right...it must have been masked by the worse pain on the left all these years. I spoke to my doctor on Friday when the trial stimulator was removed, and for the permanent one, he is going to run a set of wires to the right side of my head as well. They will be connected to the same battery, so I won't need two batteries, but unfortunately that means more wires and more tunnelling under my skin when they implant the thing. But again, I'd rather do that than start having to deal with headaches on the right side of my head and go through this all over again in the future.
I've had the stimulator out for 2 days now, and am still not feeling much pain since the stimulation effects can last a few days, although the process of removing the wires was rather unpleasant in itself. It was just done in the doctor's office...no numbing, no nothing. Actually the worse part was having the stitches taken out, as they were still very raw, not having the wires removed. I could barely feel that part of it...luckily. Unfortunately they are waiting two weeks to implant the permanent device. I guess I have to heal up from the trial a bit before they start digging around again. Honestly, I'm ready to have it now. It will be more painful than the trial, as I'll have wires on both sides of my head (I have no idea how I'll lay my head on a pillow to sleep) and because I'll have the battery implanted in my chest. But it's still an outpatient procedure and I definitely think it will all be worth it in the end.