So it’s been 2 months since I had surgery and it’s been horrific. I’ve been sat at home in agony wishing I never had surgery in the first place. My normal headache has been way worse and it had been joined by a new friend; an extra headache at the back of my head. My head has also been very sensitive to touch, having my head against a pillow to sleep has been even more painful, thus my insomnia has made an reappearance. About 2 weeks ago now I decided to do a test and see what would happen if I turned the stimulator off for a bit, the result of this was that the extra headache went away, proving my theory that it is not surgical pain and actually the stimulation is causing an extra headache. I rang up my team in London and they said to turn the stimulator down really low and see if that made a difference, but there wasn’t any significant change after a few days so they decided they wanted to see me.
On Wednesday I trekked up to London and was first seen by my neurologists headache nurse who is a reprogramming wiz. She spent ages going through things with me and asking me about all the extra pain and looking at my stim system. She quickly came to the conclusion that my nerves had been severely overstimulated and I had developed allodynia in my head which is why it was painful to the touch. She said I seem to be very sensitive to the stimulation so we need to take things slow. She has changed the contact of the stimulation on my occipital nerves so I feel the stimulation in a different area of my head and the program is now one tenth of the strength it was before. As soon as she changed it I instantly felt some relief from all the extra pain, which felt bloody good. She is confident that this program will be a lot better for me and basically when my neurosurgeon reprogrammed it he only made it worse.
I then saw my neurologist for a few minutes to just catch up. I told him I had been wishing I never had the surgery and he said is is optimistic that this will be a lot better for me, and I still have 60/40 odds of some improvement of my normal condition. I mentioned that my psychologist wants to move me over to the ONS team psychologist when I get back from Christmas in Dubai in January. One of the nurses piped up saying he is fully booked till end of Feb, to which my neurologist insisted I be made a priority and have one soon after I get back. They rang me the next day after giving me an appointment 3 days after I get back from Dubai, so that’s good.
I left the appointment feeling so much better than I did when I went in, the extra headache has now been relieved and I never thought I would be so happy to have my normal headache back. Hopefully now that the programming is better the stim might be able to do the job it’s there for and help with my normal headache and not cause me any extra pain.