Anyone else out there suffer from trigemenal neouralgia? Neourolagist unable to confirm if it is connected to my Ataxia?

[memielou]

[HarryB Administrator]

Hi memielou

Thank you for your question. I do not suffer from trigeminal neuralgia but I remember my grandmother did (she didn't have ataxia) and what a debilitating condition it was for her.

I don't think it will be connected to ataxia at all.

Harriet

[memielou in reply to HarryB]

Thanks for replying, Harriet.

On a routine visit to the neourologist about my Ataxia that it was picked up from my GP notes and as a result I'm going for another MRI scan on Friday, to check 'loops' in the trigeminal nerve and observe any further deterioration of my cerrabelum? I do hope they can do something. It's enough to put up with tremmors and spasms due to my Ataxia without the pain of neouralgia too!

Hey..Ho,

we must keep smiling tho' :o)

Mel

[HarryB Administrator in reply to memielou]

Indeed we must!

Good Luck on Friday. Please let me know how you get on.

Harriet

[wobblybee]

I had one bout of neuralgia as a child, that was awful. My daughter has had

so-called sinus problems for years, and has had various investigations, none

leading to a direct cause. I'm wondering if the pain could be related to

neuralgia?

[wobblybee]

Hi Memielou

How did you get on with your scan?

I've had an e-mail from my cousin, she's recovering from hip replacement

and is now suffering from Trigeminal Neuralgia.

[macforme]

I have had ataxia for 6 years and 3 years ago developed trigeminal neuralgia...luckily it has responded well to gabapentin because it is truly horrible. No idea if it is 'officially' connected but I am assuming it's part of my neurological wonkiness!

[memielou]

Hello all... sorry for the absence, just spent 3 weeks in Queen Elizabeth Hospital due to my trigeminal neuralgia. I have suffered with it and controled it (to a point) with carbamazepine and my GP was trying to change me to gabapentin as the carbamazepine didn't seem to be as affective any more. However, it turns out that the neurallgia was just getting worse and it seeme to 'explode' 3 weeks ago. I have never experienced pain like it and, yes I have given birth twice with no pain relief! put back on carbamazapine, 800mg, highest dose, unfortunately all drugs for Trig Neuralgia has symptoms of ataxia as a side affect so I had a choice; the worst pain or twice the ataxia rendering me almost completely reliant on others, I am fiercely independent and not at that stage yet! I opted for surgery to freeze the trigeminal nerve so meds can be reduced. Recovery is proving to be very slow and I can't imagine going out in th cold air again but it's early days? Watch this space.

They say Trig Neu is unusual for Ataxians and is more often seen in MS sufferers but I suppose both conditions have similarities?

Mel