Please help with TN injury at work court case
Posted , 6 users are following.
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
1 like, 14 replies
sandy5221948 ele-mental
Posted
Well, I have cluster headaches caused by the Trigeminal Nerve. Four years ago I had a bout of this, but not nearly as severe as the period from October to February of this year. I had a C-section baby after enduring over 12 hours of labor with my baby's head showing, and thought that would be the most painful thing I would ever endure. Not true! These TN pains are the worst thing I've ever been through. My eye hurts me so bad, I can't even hold it open. I've had the lightening bolts through my head too. When I'm suffering with this, I can't wear my glasses, so I don't know what my face looks like, but my husband says the whole side of my face is swollen. My cycle lasted for over 12 weeks, but I still have some break-through pains. They are not nearly as severe as before. I don't know about you, but I was traumatized worrying about the next attack. No way I could have worked at a job, I could hardly get from the bed to the chairs. I can see how trauma to the TN could cause constant pains. I have it on the left side, too. From the gums, up into my nose, the roof of my mouth, then my entire eye, and the streaking pains go from forehead to back of my head. I scream in pain....and my poor husband tries to comfort me. I'm usually up from around 1 am, till daylight with it. Makes me dread going to bed! Hope this helps you!
ele-mental sandy5221948
Posted
Hi Sandy, Thank you for taking the time to reply! It's very much appreciated.
Bless you....and your husband- he sounds a star.
My parents are great and i have a few good friends left, but apart from that now one knows the pain like the people on these helpline web pages. God knows what people did before they had the internet and could chat to people with similar experiences. Reading that you're not the only one going through this is a small comfort that I'm not going mad, it's just a shame anyone has to suffer it.
I hope you find the holy grail of the right medicine cocktail to ease the pain!
I'll be logging in every few days if you ever want to chat. have a good day !! Thanks again x
marlene36342 ele-mental
Posted
ele-mental marlene36342
Posted
paula76255 ele-mental
Posted
Hi
God what an awful thing to happen to you! Nerve pain is THE WORST pain known to mankind and TN is not called "the suicide disease" for no reason. I've had type 1&2 for 16 years and have had very little sympathy from anyone.
Anyway I too live in the U.K. and a week ago on the This Morning ITV programme their resident Dr Raj was doing a phone in and it turns out that he had TN and had the MVD surgery. He said the pain was so bad at times he couldn't talk (don't know if yours extends to the lower jaw - mine does). The fact that a medical professional has said how awful TN is can only help you in my opinion. Maybe you can find it on catch-up tv and show that to your legal team?
Good luck! Sending my love and good wishes.
Paula x
ele-mental paula76255
Posted
Hi Paula,
Thanks, I'll look it up! Nothing I say seems to register, even with Neurologists- which makes me think when these Doctors put on their "legal hat" all care and consideration goes out the window.
A video of This Morning on TN would be quite a powerful bit of evidence to show the Judge!!
The hardest thing seems to be getting a diagnosis of TN type 2 as most Neurologists do not want to even acknowledge it. The published medical data i've read says it takes an average of 6 doctors to get a diagnosis.
Do you mind if i ask who your doctor is or what hospital? I understand if you don't want to answer. If it helps to decide, I live in East Sussex and go to London... so if you live up north of London your doctor wouldnt be much help to me. Is there a way to send a private message on this site if you dont want to publish your doctor name??
Have a good day
Harry x
paula76255 ele-mental
Posted
Hi Harry
I've no idea how to do a private message. I live between Milton Keynes and Bedford.
I've seen Neil Kitchen at Queen Square (private) but also works at UCLH, also a professor Zakrzewska at the Eastman dental hospital London (she is an expert on TN) and a professor Eldridge at The Walton Centre Liverpool (also TN expert/neurosurgeon). Have you had an MRI as usually that's how TN is diagnosed but not always clearly seen.
Good luck! Hope you get the help and results you need!
Paula x
sandy5221948 ele-mental
Posted
I'm in the US, and my doctor told me an MRI would not tell them anything. I had a scan of my head at the emergency room when I first went in with this horrible pains, then I had one of my sinuses to rule out a problem there. I keep seeing where everybody has an MRI, but my doctor never, ever thought it was worth doing. I DON'T want the surgery unless the pains come back like there were. Before I was given Gabapentin, I would have hopped up on the table and let them do surgery with me wide awake, it was just that bad! Now, I'm off the meds, and only use oxygen once in a while. I know the bad, bad pains are going to come back...it's just a matter of time. I just can't imagine why my doctor told me that an MRI hardly ever shows anything, yet everybody here has had one!! For what it's worth.....a doctor can not say whether anyone is suffering, or faking. Everybody's pain level is different, but I can tell you...this pain is like no other! The usual pain pills do not have any effect on this hell. One night I took 2 1/2 oxycodone (sp) that belonged to my husband. I had taken lots of OTC pills too, and nothing worked. I just got so sick, I threw up over, and over. We just don't take strong pain killers unless it's after surgery, and we only take them for the least amount time necessary. I think the doctor could have given me morphine, and it wouldn't have touched that pain. To me...this should tell those doctors our pain is real, we aren't looking for a medication to get high on....that we just want relief, and the thing that works best for us is not a narcotic. As I stated before, I still have headaches...but not the killer kind! It's like the dull warning I would get before the killer one came on, but it hasn't progressed to that point in months...thank God! I have these headaches nearly every day. It's bothersome, but I'll take this over the killers anytime!
ele-mental paula76255
Posted
susan33651 ele-mental
Posted
Hi,
I have had migraine headaches since mid teens and they were Bad, about 8 - 10 years ago they seemed to change and focused on and in my left eye. Over the last 6 years or so this pain got worse and the usual pain medication became more ineffective. The attacks got more frequent and BAD to the extent that I self-medicated with drugs my husband was prescribed (Tramadol and MST), and about 2 years ago even they became less effective. And the pain became intolerably BAAAD and spread to my nose and teeth/gums. So I thought maybe it's Cluster headaches. After my entire left side of my face and scalp exploded with pain following a trip to Oxford in really cold wind and sleety/icy rain I thought perhaps it was TN. Then the right side joined the party!!! It was a game of guess the side which is going to be a problem from day to day after that.
So, trip to the GP, diagnosis and treatment, and now, a year and half later I have more days without attacks than with. My Neurologist diagnosed Migraine with aura, Bilateral TN and Stabbing headache syndrome!! Sometimes I have a combination of two or more of these attacking at the same time, usually on the left but also the right on rare occasions. Some attacks are over in a flash, no more than a few minutes of TN stabs or shocks, but others can involve all three branches of the nerve (TN), horrendous aching throb with vomiting (migraine) and a pickaxe in the skull or behind my ear (Stabbing headache syndrome). Since starting the drugs these epic pain fests have shortened from 18 - 20 hours to about 7 - 8 and don't always include migraine.
I take Amitriptyline 70mg daily, Oramorph, Tramadol, Ibuprofen and Co-codamol in combination and this brings the pain down from intolerably BAAAD TO BAAD with the odd few minutes of BAD. I am still getting the dose of Carbamazepine to a fully effective level. On a day-to-day basis I have maybe 50 or so attacks rather than the several hundred I had been getting a year ago.
I have autoimmune /Connective tissue Disease so have to be careful with the drugs for both problems as liver damage is a huge risk. But I am getting there!!
It's possible the TN is triggered by the autoimmune disease but I have had several head and face injuries too following a couple of falls (full flight of stairs and out of the shower).
Well, that is my story and I hope it helps you.
To send a private message click on the envelope icon top right!
Best wishes.
ele-mental susan33651
Posted
Hi Susan, Thank you for taking the time.
Sounds an absolute nightmare! It's so weird reading how much variety of headaches and effects everyone on this website has.
Until you're affected you just just don't realise. That's amazing you managed to reduce the amount of headaches you feel.....fingers crossed the numbers come down again this year.
Have a good day !!
susan33651 ele-mental
Posted
Thank you, and here's hoping that you get some relief too.
Best wishes
army183 ele-mental
Posted
Quick comment: Prof Zak is the medical director/consultant on the UK TN Association. They have loads of literature that would be helpful for you - it's only a few quid to join and you get a massive ibfornation pack. Prof Zak is speaking st the upcoming annual TNA conference. I am sure the clinical members of the board have something they can provide which will help you.
Cheers
Big D
ele-mental army183
Posted
Hi Big D,
Thanks for that !! I've just emailed them now
Have a good weekend!!