Patients Nervous system diseases
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I found out in December 2016 that an ear and sinus pain was an neuralgia pain called trigeminal neuralgia. I'd never heard of it before.
It's a rare disease or condition without a cure. It seemed I was alone and the ENT dr just dismissed me . Saying there was nothing he could do.
Well it might be rare but I'm not alone. I found a large group of sufferers online on Facebook in the UK and another worldwide on fb too. As well as a UK charity called tna.
It can be treated with epileptic drugs like carbamazepine drugs and many others too. If your very lucky operations on the trapped nerve can be tried as well. But if like me and no reason for the condition is found . Drug treatment is the only way forward.
Many ms sufferers get this condition too. Because the sheath that protect the nerve slowly disappear. Then the pain starts .
I hope any one out there suffering with any type of facial pain. Whether its eye cheek sinus ear teeth nose lips jaw etc can get the help straight away unlike me.
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@Trudij Hello Trudij,
Thank you for sharing your story, having a chronic disease is always difficult, nevermind when it is also a rare disease that can confuse doctors.
It is wonderful that you found fellow sufferers online, it is important not to feel alone when battling a chronic illness; We have several members of Carenity that could probably relate to your post.
Can you also relate to this? @Sueysue @Cazza1 @Yank34 @Juliette @MeganPo @esdoyle @Kaffpix @acid77 @katren @Jusmejeannie @Moody2shoes @AlisonPJ @papillon @Katakitty @nelle51 @il_poverello @Squidge @jacqs62 @ktk1975 @mystery @noelle1 @x.Irene.x @PATZ3240 @purpleeve @Kleigh2802 @shelly3838 @august23 @karayanna @Purrfik @jenny123 @Janbronte @Sarahquesada @Siouxsiesioux @Canadian @karen3006 @MissVJP
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Josephine, Community Manager
Hi there ,
Im also uk and have Trigaminal neauralgi its nasty and yes very little help available unless like you say Carbamazepine for symltons and Pregabalin. Gp have limited knowledge and depending on your County what pain help and Support is availble .it can be isolating and frustrating. I have heard of Tna but was unaware of uk media support groups .
I wanted to just say hi and I completely understand how your feeling battling this myself.
Take care .
I was also diagnosed almost 9 years ago and to begin with I was treated as though I had had a stroke because of the droop in my eye and the near paralysis in my face . It was months before I finally got a drug that worked for me I take topamax, it makes my hair thin so I gave go take extra supplements but it also makes you lose weight so not all bad lol, I was finally able to return to work 3 years ago and although I know the pain is there it no longer runs my life
Love and peace
Hi, I am also in UK. I have had TN since a fall 5 years ago when I hit my head and cheekbone. The Neurologist said it cannot occur after a fall, although I am certain my Essential Tremor started immediately after the fall, the TN a little later. Again, he said neither could be caused by the fall, and I must have had the ET before and didn't notice it! He did put me on Carbamazapine which has worked low dose until recently, when after severe sharp burning searing pains in my forehead and crackling electrical pains behind my left eye, on cleaning my teeth, washing my face, eating etc I had to gradually triple my dose. It is a very scary pain, because it can be so severe (I had 5 of the sledgehammers as I called them during the period I was without any suitable medication) I had continual low level pain at that time, with occasional sharp burning pains as well. I have heard conflicting advice about the operation, sometimes works, sometimes pain comes back, sometimes pain made worse, although I have also heard of two successful ops. Also the MRIs often don't find the compression likely to be causing the problem, although it will pick up MS or a tumour. I haven't had an MRI to date. Going to be reassessed soon by a Neurosurgeon.
Hi, I have had trigeminal neuralgia on & off for many years. I have had attacks caused by the wind, toothache or headache or an attack can just come on for no reason.
Carbamazepine was no good for me; it made me feel as though everything was slurred, I felt as if everyone were slurring their words! I have had Gabapentin prescribed for it but it doesn't seem to touch it. I usually just wait a couple of days until it's over.
After having T.N. though, I get another day where my head/face are hyper-sensitive and are painful to touch. It's definitely not nice but I think that nerve pain is very difficult to treat.
I soooooo empathise with ANYONE with TN!!!!!!!!!!!!!!!!!!!!!!!! TN was my 1st symptom of my MS, which lasted almost 2 agonizing, "soul-destroying" years (35 years before being diagnosed with MS). Not sure if an extended course of Acupuncture and Osteopathy (on my cervical spine) did the "trick" or if the MS literally "burned itself out", at the time BUT will NEVER, EVER want ANYONE to experience ANYTHING like this EVER!
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I m a patient of TN from 19 years. I want to ask is it possible not to detect any thing in MRI.
My MRI is done 4 times.always clear.pls share if any other had the same experience.
CT scans should show any abnormality in the brain/neck etc.....ask for one, it might just show something...nothing to lose by having one.....Hugs..G
MRI can be completely clear and there can be no reason for the TN. But always get a neurosurgeon to look at the scans . If only a neurologist looks at them they do miss things. My neurologist missed a loop on my left side near my trigeminal nerve that might be causing a compression. But as I have bilateral TN they neurosurgeon can see no reason for TN on my right side. I'm mainly controlled by meds . It's going really well. Duloxetine and topirmate. I've just had the dosages upped because of a flare up by my gp who is very knowledgeable about TN.
Duloxetine is brilliant. I was put on it for fibromyalgia. I dont have fibro as far as I'm concerned. But it's done wonders for the facial pain. It stopped the flare up within 2 weeks every time the dose is upped. I'm also on it 4 anxiety and it's doing ok for that. Not brilliant but ok.
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