[helper326]

Hi, I'm new to this forum. I do not have TN, but work with someone who does. After reading the Stickies I have gained somewhat of an understanding of this terrible disease. My co-worker is a 41 yo female who was diagnosed with TN approximately 6 years ago. She had the Teflon disk surgery about 5 years ago. She says “It did not work”. I have worked with “Clair” daily for the past 2 ˝ years. Before that I worked for the same company, but not with her. Before her diagnosis she was an exemplary employee. I would like to get some help and advice.
When I started working daily with Clair she continually complained about the pain in her face. Her complaints were the same as I read on here. She was going to the doctor a few times a year and getting her meds adjusted. She would say she had “pain pills” that she would take when the pain got really bad. I don’t know what they were, but when she took them she would eventually fall asleep at her desk. This probably happened 1 or 2 times a week. Some days she was fine and the next she was “out of it”. This continued for about a year and a half. Her work was very poor; fortunately she works for a company that is very understanding.
About a year ago she started to complain about her back. She was diagnosed with Scoliosis. She then took “pain pills” for her back along with her TN meds and fell asleep at her desk. Again, a few times a week. She would still complain about her facial pain, but not nearly as much as before, her back was now her chief complaint. She had back surgery and was scheduled to be out for 8 weeks. She ended up being out 8 months.
When she retuned she was the same as when she left. Her back still sore, the doctors told her “it would take up to a year to completely heal”. She rarely complains about her face pain, unless she comes in a few hours late, or wants to take a pain pill.
I feel sorry for Clair most of the time, but there are times when I question her complaints. How do we know if she is truly in pain or just addicted to drugs? How do people with this disease hold a job? She would be devastated if she lost her job, but how do you justify having an employee who is “wasted” on the job. I also worry about her driving. She totaled her car while she was out with her back. She rear-ended another vehicle. Can someone please give me some advice? Clair is a great person and I would hate to see her lose her job.

[semcsquared]

How do you know if it's real or addiction (or both!)? I'm not really sure, but here are some things to consider.

1) Most medications prescribed for TN are not addicting. Narcotics are only used to supplement drugs like Tegretol and Neurontin, and then only in conjunction with such drugs. AND only after all such medications have been deemed ineffective, or not effective enough. They are never tried first or alone by a responsible doctor who is aware of the diagnosis.

2) Most people with TN and other cranial neuralgias have had to suffer fools who can't get it through their heads that even if we "look fine" we're still in excruciating pain. For some reason, explaining neuralgia to most people is difficult, and it's not necessarily we want to explain to everyone we have to interact with. Additionally, neuralgia is something that can go in and out of remission. I myself just had four good *years* with relatively little pain. I'm now on a higher dose of medication than ever. To some people, the fact that the pain comes and goes seems "fakey" and they'll give their opinion. Having such pain belittled can get old, and hurtful, and make us even less inclined to discuss the subject with others at all.

3) It is not unusual for surgeries to fail to fix TN. It seems often, in fact, to do nothing at all or even make it worse.

4) Back surgery does take a long time to heal from. The pain from her back may be outstripping her facial pain for now, if her TN isn't too bad.

5) As a college student, I often had to weigh the benefit of having my pain alleviated against the cost of being completely wiped out all the time. It's a fine balance. Un-medicated, I got a D on a test in a class I got A's on every other test in, because the pain was distracting me so much. Other classes, I had to ask for extra time just to *complete* the tests, because the medication was slowing me down so much. She may be having trouble striking the same balance at work.

You could always sincerely ask her what she's taking. We're each walking experts on what we're taking now, what we have taken, what worked, what didn't, and what god-awful side effects they had. Look up the medications- are they addicting? That should give you a lot of info right there. If all she's on is narcotics, then it might be suspect.

[helper326]

Thanks for the advice. I will try to find out what she is taking and look it up. I really don't doubt that she may have bad days and I think that's understandable. However, on the days when the pain was not bad, did you still feel that the medication would interfere with your work? She can have days when she seems cognitively fine, but she still doesn't do much work. She went from doing nearly everthing in the office to doing very little. There are days when she will talk and talk and seem fine and other days when she just sits and does nothing. It also seems odd that the days the boss isn't in, she's usually "snowed". I know she needs this job for the benefits and I'd hate to see her lose it because of this. I'm trying to help her, but I'm not sure how to do it.

[cc smiley]

She sounds like a canidate for disablity benefits. I could not function at my job, I had to go for diablity. I had to get up extra early, so I could take my meds. before I could wash my face and brush my teeth. I would start out ok smiling and talking, moving my head around. As the day went on I would take more meds. I would have pain in my cheek, lips, jaw, didn't talk as much, didn't smile at all, just needed to put my head down. Or some mornings I wouldn't to able to wash my face and brush my teeth. I would increase my meds., I wouldn't be able to drive or function at work. In the last four years I had to make alot of changes in my life and I am trying to make the best of it. You sound like a good friend, she is lucky to have you.