An Unwanted Journey: Day 1228 – Neuropathic Pain and Terror

This week has been about pain, nightmares, and adjustments. Outside, the weather has switched from the bitterly cold to warm, from windy to calm, from sunny days to rain, from people walking their dogs just to get outside and enjoy the spring to the same people huddled around their television set watching American Idol or the series final of ER.

On the inside, there have been some parallels. My blood clots have aggravated some other nerves in the right leg resulting in some very difficult evenings dealing with the pain. But my pain and system management team has come to the rescue with changes to my pain medication regimen.

To summarize those changes, I’ve gone from 100 mcg/hr to 125 mcg/hr for the 72-hour fentanyl patches, from 6 mg to 8 mg dilaudid doses (after removing the pain pump at my request simply to avoid the inconvenience of carrying a pouch at my hip 24/7), maintaining the gabapentin doses of 300 mg twice a day, and adding 10 mg buscopan pills twice a day to reduce bowel spasms. Now, late Thursday afternoon, I feel like we’re making some good progress again.

But apart from dealing with pain and changes in pain management, there have been the night terrors. Not quite the same as nightmares, the terror I’ve experienced doesn’t involve any dream content. I merely jump awake, usually yelling something indicating complete and utter terror, clutching the sides of my bed and desperately calling for help.

The new or increased pain medication is probably the cause. During this week, I’ve gradually become accustomed to both the terrors and the drugs so that last night, I didn’t even have an episode. But even if I did, the realization alone that there is a causal relationship between the drugs and the terror is sufficient to mitigate the fear and restore a sense of balance.

Never a dull moment – outside or inside! But at least these days, as we enter into April showers followed by those wonderful May flowers, there is much to anticipate. Although I am receiving fewer visits these days by choice (terror and pain will do that to you), I anticipate spending time with family and friends again fairly soon. One thing I am eagerly anticipating is seeing my sister-in-law and brother-in-law freshly back from their world travels where you can board a plane one day in Japan and arrive at your destination in Canada 60 minutes earlier the same day!