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  • Mom’s Adventure with Trigeminal Neuritis (Neuralgia)

    Posted on February 23, 2014 by in Mom's Pain Journey


    My mother has trigeminal neuritis (neuralgia). It’s been described as the most painful condition known to man.  This is a sharp stabbing pain that comes in 10 second or more “strikes,” as she calls them.  This has been going on for about 15 years. She has tried everything and resorted to coping with it with medication. Her medication was changed last year by the neurologist in Houston, where she lived alone in a 2-story townhome. One day, when she had relatives over, she as weak so they took her pulse. It was 30 or so and was sent to the ER. I got a call while on the way to see a client saying I needed to arrange to come down where I was living in Denton, TX. They were going to go back early.  Mom ended up with a pacemaker the next day but it didn’t go too well. The pricked her lung collapsing it 10-20 percent. There were a series of complications and medication changes that would sedate her so much, she would get out of bed in the morning and pass out. About the 4th or 5th time in the ER and driving down, once she was stable, I contacted a real estate agent to sell the house. Her sister had suggested she move in with me for a couple of weeks when all this started because she was having so much pain that she would sit in the living room and weep. They had started out one time to take a trip but had to turn around because the car vibration from the roads would irritate the nerve causing a spasm.  I finally got her moved in with me. I’m working from home most days to take care of her. One day we went to CVS to see the nurse I know so she could have her ears looked at. The nurse said as we were leaving that I would be the one to keep her alive. That seems to be the case. This started 2/28/13. She moved in with me 7/1/13 to see if she could live in a one story independent or go to assisted living. She finally got on a new medication that is stabilized her but the side effects are showing up. One is diarrhea. She hasn’t told the doctor here because she is afraid she will stop the medication. During my training as a dietitian, we were taught the BRAT Diet. You can Google that if you want to know more.  It’s helped but she was inconstant with it so she wouldn’t eat a meal if she had to go somewhere that day until she got back.  I laid out a schedule for her to follow where 2 of her meals was the BRAT Diet in addition to three meals. Before this medication, the pain she had was difficult for me to witness. Everything triggered it. I started her making Shaklee Smoothees, yes that is how it’s spelled, after realizing she was avoiding eating and drinking much because it triggered the strikes. I got some Xylocaine spray from Canada so she could spray her mouth to numb it to drink the smoothies she would make. I made a list of what to put in it after setting down with her to say she needed to eat a minimum of 1200 calories or we would have to look at another feeding route.  We considered pain management and set up an appointment but cancelled it after she saw the new medication was working. She is afraid that it will stop working but for now she is able to go to Church, drive, shop, and make her meals. After losing muscle from over the year of complications and pain, she started exercise classes with a Seniors in Motion. She goes three days a week and aside from the soreness in her body, she is doing well with it. I was hoping it would also be a social thing but she has to focus so much on how to do these simple exercises, she doesn’t visit with anyone. I asked her to stick it out for 3 months then see where to go from there.  We are about 6 weeks in.

    Sometimes she would get weepy thinking she was a burden and say she should just go to assisted living but I am clear she would have had a difficult time not knowing anyone.  Living here, she can see family more often since they are closer and obviously she see me everyday.  The eating routine is the Brat Diet, Shaklee Smoothees (yes, that is how it’s spelled) with fruit, egg, honey, oats, nut butter. For meals it’s frozen dinners, stew, salad she can eat now, crackers, fruit, and most regular foods.

    This morning she showed me her spider veins disappeared after using the Shaklee Joint and Muscle Pain Cream. She was tickled, almost proud!