25 Things People Living With Trigeminal Neuralgia Wish Others Understood

15.“It is frightening to watch ER staff Google your condition while you are in agony.” – Rebecca R.M.

16.“Not only does TN affect me, it affects the entire family. It’s a family’s invisible illness.” – April B.M.

17.“It’s not a headache. It’s not our sinuses. It’s not our teeth. Please stop treating us like it is. And no, we are not exaggerating and we are not addicted to painkillers.” – Jacy C.

18.“I have compared the pain to a toothache and earache combined, in addition to having hot coals placed inside my cheeks. The pain is more than I can stand, even with my high tolerance for pain. It makes me flinch. I can’t talk on the phone or talk at all. Anything that touches my lower lip or cheek sets off waves of throbbing pain. Something as light as a breeze from the car fan will set it off. The pain wakes me up in the middle of the night if I turn the wrong way or if the sheets touch my face. The stress from knowing a certain move is going to create the pain throws me into a panic attack. The medicine makes me groggy and not myself. My head feels sore after the episodes of pain are gone.” – Dora L.

19.“Having concentration is near impossible, as are finding the right words for anything, really. I tell people to drink an ice cold drink quickly, get the ‘brain freeze’ headache and then try and talk to me through that. Oh, except that is only one set of those nerves — some of us have it on all branches, on both sides. I haven’t had a pain-free day since the end of 2010. Flares are a totally different creature and they have changed me. I am anxious; I am trapped in my body. I am mourning my previous ‘carefree’ life.” – Saber S.

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