About 6 months ago I had a few moments of severe pain while swallowing. As the months progressed the pain became more severe and more frequent. About three weeks ago the pain began occurring without any outside stimulus. A sharp almost electric pain in the tonsil area, back of the throat and base of the tongue. An incapacitating pain which is something I had never experienced before. A pain that when it occurred simply paralyzed me in whatever position I was in until it once again went away. It was a pain such that everything faded out in the face of. It is amazing how many things remain undone when you are worrying about the next time you are going to have to swallow something( Its hard to imagine how many times you swallow in a day from just saliva until each time hurts). The pain I have discovered is most often caused by an artery rubbing against a nerve at the base of the brain. Drugs are the first line solution while the second is brain surgery.
The medical community responded, a CT scan looking for Eagles syndrome, Prednisone to see if that would help. Finally opiods both Oxy and Hydro with a chaser of dilaudid. Nothing worked to dull the pain. Two trips to the emergency room during which the pain its triggers, onset and location baffled doctors. Later when we found that the incidence of this condition is around .07 out of 100,000 the doctors confusion became understandable. Few doctors see a case of this in a lifetime of practice. Meanwhile the pain had become so severe that it became unbearable. Strangely at times just simply shutting off and then returning for no definable reason. The pain caused it to be extremely painful to move my tongue, swallow, yawn, smile or open my mouth and talk. But the pain was one sided and only affected the left side of my head. My voice became a whisper and if I attempted to talk it often simply ended in a very sharp paralyzing pain .
The second emergency room stay lead to the hospital two days before Christmas. An MRI was performed looking for some abnormality that would cause the pain. Thankfully or unfortunately it came back normal. No tumors, no growths but no answers as well. By this time my son the veterinarian and I had both narrowed it down to Trigeminal Neuralgia or Glossophyrangeal Neuralgia from of all places searches on the internet. The symptoms fit almost perfectly and veterinarian son Steve talked one of the emergency room docs into a dose of carbamazepine. Almost magically in 30 minutes my voice came back and the ability to swallow was much less painful . Unfortunately that dose of curative medicine got lost somewhere in the shuffle and by Christmas Eve morning I was once again beset by uncompromising almost continuous pain. I have not cried from pain for a long time but this was pushing me over the edge. A range of opiods was tried with little relief. Finally a doctor came who had read the charts and gave me a heavy dose of carbamazepine and an hour later the pain had diminished. The doctor explained that without treatment the pain from this condition was a cause of suicide and I understand why. I have never experienced excruciating and unremitting pain before this condition and now understand better the reactions of those people who have ongoing painful conditions.
But the adventure continued carbamazepine has a long list of side affects and I seemed to have most of them. Nausea, unsteadiness, gastric unease and headaches but they all still were better than where I was before the drugs were administered. It’s is almost magic how the drug did away with the pain and emphasized one more time to me that the line between medicine and magic is a very fine one and that every new scientific discovery will seem like magic until explained. Carbamazepine deadens the pain from nerve damage without deadening the nerve itself and if you think about it that’s another one of those fine lines. .
The adventure will continue as this can be a progressive condition and we are still working to balance the side effects with the desired effects but I am ever thankful for modern medicine and the doctors and nurses who administer it as without it I am not sure where I would be right now.