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Hi everyone. I need your help with descriptions of how you find Trigeminal Neuralgia and Migraine headaches and how they impact your life. Sorry for the cold/impersonal bullet points but I struggle to concentrate and lose my thread when typing.
1.) With your permission, I would like to present any replies you'd be kind enough to help me with to the Judge in my case to show what life with this pain is really like.
2.) i'll explain briefly how i have been affected then give a few examples of what the legal "expert" neurologists have said to me to see what you think.
3.) I'll try to keep it short as it's a long story, but I suffered an eye injury at work and am taking the 3 negligent building companies to court as they did no Risk Assessments of the machinery or chemical laced dusts that caused my injury.
4.)This has caused chronic eye, headache, temple nerve pain leading to an NHS diagnosis of a long list of pain inducing eye conditions.... all of which flow along the nerve pain pathway of the Trigeminal nerve. I suffer from the lightning bolt flash pain of type 1 TN pain, but also the 24/7 constant pain of Type 2 A-typical TN as though someone is driving their knuckle in my temple all day and all night - it never stops, because the eye pain and symptoms never stop. It is a constant nightmare. The left side of my head feels as though its swollen like a rugby ball and weighs like a brick attached to the side of my head.
4.) My NHS neurologist has so far diagnosed Trigeminal Neuropathy (rather than TN type 1 or type 2 due to the eye being involved as it confuses things). As my face/head swelled up so much when the accident happened, and still feels this way, I also have Post Traumatic Chronic Migraine.
5.) I have had this pain for 6 years. I have had initial trial tests for Chronic Fatigue Syndrome as i am completely run down, tired all the time. I constantly feeling sick, I ache all over and have regular bolt flashes of pain go down the nerves in my body. and have to spend anything upto 18-24 hours a day laid up in bed.
6.) An average day for me can be- getting up when the sickly feeling and pain eases enough. i take my dog for a walk for as long as i can, then have to lay down as it tires me out. I'll get up again, however much later, and try to walk around the block to get some exercise and air and eat breakfast or lunch.... then i'll have to crash out again until the evening. Rarely i'll be able to manage more than 2-3 hours being upright. As an example- I watch a game of football with my Dad and usually end up having to lay down before half-time. To try to manage my life i have had to impliment CBT techniques to be able to spend the odd hour or two here and there doing paperwork or banking or shopping etc.
7.) I spend most of my days lay in a dark room with the curtains drawn, if i go out i have to wear sunglasses as i am light sensitive.
8.) I have not been able to work, I have been judged as unable to work by 3 GP's, 2 ATOS workers, a ESA Tribunal Judge and Doctor, also all of the doctors in my court case.....but the defendant Barristers and insurance companies are trying to cast as much doubt about the symptoms of TN and headache pain as possible....which is why i would like your help.
9.) Things the Legal expert neurologists have said to me in the court case interview/interrogations have included:- "Migraines are ONLY ever migraines if you vomit", "why don't you just get on with it", “There is no such thing as chronic pain”, “There is no such thing as 24 hour pain”.
10.) Worse than that.... the court case neurologist has overlooked that the cornea makes up part of the Trigeminal nerve pain pathway and "left out" of his report that his corneal nerve and facial nerve reflex test caused me so much pain i screamed and jumped back.....he actually wrote everything was "fine" which i'm sure was an accident, and not to try and help his client get away with what they did to me....
11.) I would be so grateful to anyone who would be kind enough to tell me how they cope with Type 1 and especially Type 2/chronic Trigeminal neuralgia pain and how you manage to go about your day.
Thank you for your time!
Hope you're all well
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