Does anyone have Trigeminal Neuralgia!!

festival84

Does anyone have Trigeminal Neuralgia, and if so, what medication are you on,and does it affect your work. Do you know if this condition is classed as a disability???
Thanks .

mickey54

I was diagnosed with this many years ago - and stopped taking medication prescribed, as it was interfering with my life. The meds made me sleepy - but I still wakened up with the pain. I have also been diagnosed with ME - and this is or can be one of the side effects.

I don't think TN on it's own would qualify as a diability.

When I get the pain - I take some strong painkillers - and, as heat or cold can aggrevate it - I keep my mouth covered when I can.

VfM4meplse

Poor you, I wouldn't wish this on anyone. There are a number of meds that can treat it, many of which need to start at low doses and titrate up gradually. Persist with it and you'll see the benefit.

mardatha

I have it as well, and I have ME. I dont think its a disability but it cert is very disabling and a bloody nuisance LOL... I take lots of brufen , 4 hourly, stay still, and keep heat on it.

mommame

I have this as well and it is driving me nuts,when I started with it I was told by an optomologist that ordinary pain relief will not touch it so I was started on Tegretol which is epilepsy medication also sometimes used for mental health conditions .
My eyesight is severly effected and I look like I have just done 12 rounds with tysson as my eyes are so swollen and bloodshot and continual tears as well.
I built up to 8 daily 2 at a time but still no improvement,he is deciding by the end of the month if I need surgery to release the trapped nerve.
I dont have ME, but Psoriatic arthritis which is also an autoimmune condition.
Dont think it is classed as a disability though.

allydowd

I had it and was 'cured'! It turned out that I had an unnoticed, and hence untreated, dental abcess up under my cheeckbone that was causing the pain. Have you seen a dentist lately?

mommame

Yes I have ,the dentist was my first port of call because I kept getting extreme pain when chewing anything,just like an electrick shock,then the eye pain started but I never had it seen to because I just thought the doc would think I was a basket case,trying to explain that it was as if someone just stuck a pin in the pupil of my eye just felt too way out to me so never went about it.

This has been happening on and off for about 6 yrs until a few months ago I woke early in the morning and thought I was having a brain hemmorage( sp)The pressure in my eye was unbearable and I felt like my eyeball was going to burst.

After getting to A&E I spent several hours where they could not control the pain and still not able to open my eye,pouring with tears and my nose was running like a tap,I looked pathetic.
They started me on injections for severe migrains, even though I told them didn't have any headache.
Well the upshot is I saw an optomologist the next day and after further tests this was the diagnosis.
Hth.

mardatha

With me it starts as earache - mommame just like you, I describe it as a pin sticking right into my eardrum - then it settles into the "bolt of lightning pain" right down the side of my head. I can't concentrate, can't listen and can't talk when its bad, just have to lie still with a hot water bottle on it.

mommame

mardatha wrote: »

With me it starts as earache - mommame just like you, I describe it as a pin sticking right into my eardrum - then it settles into the "bolt of lightning pain" right down the side of my head. I can't concentrate, can't listen and can't talk when its bad, just have to lie still with a hot water bottle on it.

Funny you should say that as I have been having earache on and off for a few months followed by throbbing at the base of my neck,I have had an mri and they said I have a bony mass near the left temporal lobe but they are not going to touch it if it doesnt't cause any other problems,got a further apt with the opto on 23rd march so see what he say's then.
Hope everyone is ok,very wierd that someone should ask about this condition on here as it has only raised its ugly head lately in my case and now as active as it ever was.

VfM4meplse

What is quite common wth trigeminal neuralgia are symptoms that follow a linear pathway across your face - it's almost as if you can trace a line from your ear to the jaw, which is basically the route of the trigeminal nerve. It's an unfair condition, as it can come on suddenly and leaves you thinking "why me?" - but in your cases co-exists with serious chronic conditions. It's important to be positive in the face of this adversity.

mommame

VfM4meplse wrote: »

What is quite common wth trigeminal neuralgia are symptoms that follow a linear pathway across your face - it's almost as if you can trace a line from your ear to the jaw, which is basically the route of the trigeminal nerve. It's an unfair condition, as it can come on suddenly and leaves you thinking "why me?" - but in your cases co-exists with serious chronic conditions. It's important to be positive in the face of this adversity.

Yeah I know what you mean thats why every day I think of 1 thing I am very lucky for, which today is:I am 80% functioning under my own steam and loving this sunny spring and full of promise day!!.