My TN - Nikki's story so far

Hi everyone, this year has been very challenging for me as I developed this neuralgia. I was fairly fortunate to see an out-of-hours doctor (Dr Locke?) at Lincoln hospital 3 months after my first constant severe headache symptoms (which my gp was treating as migraine).

Dr Locke (Loch?) diagnosed type II trigeminal neuralgia and started me on a very low dose of 10mg Amitriptyline & sent me away with orders not to let any other doc change this!

After only 2 weeks the pain just disappeared - I couldn't believe it, nothing else had worked. I had tried changing my diet, sleep, lifestyle, anything and everything I could think of to escape the pain. At time of writing however (Nov 2012), I am starting to get quite strong breakthrough pain with new pain sites and today the symptom I was most scared of occurred - pain upon chewing, on the right side of my head which is the less active for me neuralgia-wise. Not being able to enjoy eating is unthinkable to me!

Hi Nikki,
How are you managing with the newer pain?
(( hugs)) Mimi

10mg/day of amitriptyline is a very low dose. Since you responded to it pretty well, perhaps you should ask your doctor if you should up your dose. I take 100mg/day, which is thought to be the therapeutic dose. It’s helped me tremendously. Some people do get relief at lower doses. Perhaps you could just go up to 25mg/day and see if that’s enough to give you an extra boost.

A big thank you to Mimi & Crystal for your concern & comments - I am genuinely touched & appreciate it <3 Crystal reading your comment & other message it's like you are reading my mind - I spent most of yesterday and the evening before reading through the Face Pain Info pages and the idea of asking for some change in my medication has been kicking around in the back of my mind (when I can concentrate long enough to listen to it!). Now I am sure that's what I need to do.