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Living With Facial Pain

How to do a PhD with TN: part 2


#1

Back in Oslo, I knew they would not accept me into the PhD programme with a 1 year MA, so I did another MA -my third. During this one, my TN started gaining on its independence (much like its host), and I would experience attacks even without cold sores. At this point, I did nothing, just rode it out. My mother, a GP who had probably not bee informed on TN since the early 80s, told me back in 2000 that there was nothing to be done about it, and sent me to a dermatologist due to the cold sores. I never saw a neurologist.

After my MA, I started working in professional archaeology, which in Norway is quite limited. As all the work has to happen in the summer season, the longest contract I ever got was 6 months, and the shortest 1 week. In the winter time, I went on unemployment and kept searching and applying for PhDs opportunities. The TN grew worse. My motherput me on Lyrica, but after a month, I felt like I had become entirely 'flat' moodwise, and I quit. I still didn't see a neuro. In the field, I had started to note nerve pain in other parts of the body, like my armpit and elbow. I thought it was a joint problem.

Finally, I moved farther away and found another GP. I encourage everyone who has parent doctors to sever the medical ties! My new GP immediately referred me to a neuro. After a 9 month wait and anoher field season, I got put on tegretol. I did not ever think I could be pain free, and was in awe. I realised I had been having around 100 attacks a day. 3 years after my final MA, I started my PhD - back in Exeter. I was on tegretol, life was great. I finally felt that I was on the right track, exactly where I wanted to be since I was a teenager. At 33, I was ready to start. And then I got ATN.

I realised early that my computer was the problem. Every time I was on a computer, my cheeks would stat o burn in exactly the same spot, on both sides. At first, increasing the Tegretol helped. The it wore off, and I hit max dosage. Went to an NHS neuro who would not hear about ATN (anyone...?), and gave me instructions to stop drinking coffee and take one aspirin a day. He would see me again in 8 months. Haha. Here I was, in a small town that statistically have less than 10 TN patients. I am too young and too bilateral to fit the stats. I was used to a super neuro who would ring me up as soon as I left a message, who would adjust my meds and phone it to the pharmacy with one call.

I went to a private neuro, who was sweet and caring, gave me suggestions for new meds, talked me through my situation with a rare form of a rare condition, but cost £125 and had no real power.Now I am nearing the end of my scholarship, nothing is helping against the one trigger I cannot avoid: the computer.

The PhD? It is coming along well. I work 8 hours a day, have done all the time. I have no disability rights in this country, so I cannot afford to go part time. There is barely any workplace were I could work without a computer. I have stopped watching TV, I use the dictaphone on my phone, and I never go online for pleasure. I use an e-reader and a stylus totype this message. All the while, getting more and more triggers that trigger me rapidly, especially noise. My office space has a construction site next to it for