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I'm 18 years old and have had a form of this condition since I was 13! When the first started having this pain my whole body would shut down as sort of a defence system. It almost looked like I was having seizures. This happened many times when my pain would peak at its highest level. My parents would keep bringing me to A&e and I would be admitted! When in hospital as an in
patient the doctors kept telling my mother that children don't get TN and that it was all in my head (on my 3rd admission the doctor had me stay on the burns ward to show me what 'real pain' was) thankfully once I reached age 14, private doctors elsewhere out of the children's hospital would consider seeing me. I stared going to see a doctor who did some more scans and confirmed my condition and told me in fact children too can have TN. He started proforming stelate ganglion blocks. These started to work and would take my pain away for about 65 days each time I would get one. I have had 28 of them since and would recommend this treatment as sort of a firefighters solution! As I progressed through school and exams started coming closer I started to look elsewhere for a more long term treatment. I was put in contact with another doctor who started DHE (dihydroergotamine) infusions on me. These take away my pain for about 4 months but the treatment can be toxic and therefore it can only be administered every 6 months. So you see my problem of this 2 month gap of extreme pain. I am stranded in this gap at the moment. I have been admitted to hospital for pain control and they have been administering morphine to me. I have my final exams in 2 months and am very worried that I will not be able to sit the . Does anybody have any tips to manage pain? All normal life has stopped for me and I am struggling to cope!
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