Dealing With Nerve Pain

Four years ago I was diagnosed with a nerve pain condition... most likely Carotodynia. The pain is a burning, stabbing pain in right side of my neck. Nerve pain is not easy to define because it's nerve pain. Most diagnoses are made as a process of elimination.

It doesn't hurt all the time, but the pain is either a zero or a full on ten. It's hard to talk about, but if it helps someone else, it's worth it. Also, I felt like I should explain why I haven't been at work for the last month. I've have many kind emails and messenger correspondence asking how I'm doing and I appreciate that greatly.

In my case, it has been manageable with medication (but that was also trickier than it might seem). Rarely, surgery is necessary, but as you can imagine, surgery dealing with nerves has got to be a last resort. There are so many nerves and pinpointing the exact points of issue would have to be mind-blowingly difficult.

I don't have the pain all the time... I have flare ups. Two years ago I had a flare up and another one recently. When a flare up hits, I get a searing, stabbing pain in the right side of neck. I can't speak. Usually, tears roll down my face. It is the most intense pain I have ever felt in my life. Attacks are usually 2-5 minutes but some have lasted as long as 20 minutes.

On my latest flare up, I did not respond like I usually have to my medication. After three weeks without improvement (there were days when I had pain episodes more than a dozen times), I ended up being admitted to Corewell Health in Royal Oak. After my MRI/MRA came back showing nothing wrong, I didn't know if they could help me. Above and beyond, Dr. Stoner with MIND did not give up on me. With some new meds on board, the attacks finally stopped... abruptly and thankfully.

I will do anything to avoid a nerve pain episode so I try not to speak or laugh. Movement of the head can trigger the pain... especially if I turn my head while speaking. Raising my arms over my head or any somewhat swift movement? That's another way I'll most likely get blasted. Swallowing is another trigger, so drinking or eating is like Russian roulette. When bad days hit, it seems like everything triggers a pain episode. Stress is another trigger. The more I stress over getting hit, the more I get hit... it's a really bad cycle.

I have no idea. I don't know for sure what actions trigger the flare up. My best guess is stress, but I don't know for sure, but here's hoping I don't have another flare up... ever.

I would like to give a huge THANK YOU to the staff of Corewell Health Royal Oak / former Beaumont. The entire staff was so above and beyond caring and helpful. From the NAs like Ana who were so caring and helpful to the the kick ass nursing staff, Kelsey, Kari, and Shakirra... thank you so much.