Who knew that one week pain free was considered a huge win by the medical profession? I did not, they are small wins when you have chronic pain!
Two weeks ago I had nerve block injections at the base of my skull into my left and right side Occipital nerves. This included both the lesser and the greater branches, and gave me wonderful pain relief at first, but it was only seven days before my headaches returned. Yes, seven days pain free after almost 3 years of constant pain, it was lovely, but it was short.
Yesterday as I met with my pain specialist, he grinned gleefully as I woefully told him that the injections had worked very well, but on day seven the pain had come back. He said that was a “very favorable result”, I looked at him as though he had gone totally batty and thought to myself how it didn’t feel very favorable to me – instead I have found myself feeling quite disheartened, a lot like a child who is taken to their favorite candy store, is allowed to breathe in the delicious sugary scent of their favorite lollies, but then cruelly told they are never allowed to have candy again!
I had been hoping for a miracle. As the hours had become days with no migraine style headache from my occipital neuralgia, I had thought maybe one had been granted! A week was not what I would have called a good result – a week felt like a failure.
The next option now is to get a small electric probe inserted into the base of my skull, my surgeon will then search for the nerves themselves and try to shortfuse them with electric pulses. If this works he is hopeful that the week of relief may turn into 2 or 3 months. The pain will not be fully gone, but since there was some success with the nerve block it is promising that this will help to bring the headaches to a milder and more manageable level.
This will be my third hospital admission in 2 months, admissions that hope to be able to give me some relief from this chronic and debilitating pain cycle I am stuck in. Add in 5 more pain specialist appointments in that time too, and I wonder how anyone could consider it “lucky” that those of us struggling to live with chronic pain get to stay home all the time and lay in bed. It is exhausting, it is a job in itself.
It is also terrifying. It is very frightening to be laying on a bed while someone moves needles around under your skin, hoping to find the exact spot that is referring intense pain through your body. It is scary to wonder how long you can cope if the relief never comes. It is tiring to sit for hours in hospital waiting rooms, filling out admission forms, and reports for your insurer.
I also deal with a great amount of guilt. I’d much sooner be earning something towards our household income, then trying to find the least painful position to sit in at home.