Hi all ankylosing spondylitis and neuralgia sufferer here

Hey all,

As title says I have AS, diagnosed last year after 25 years of being told I was depressed / anxious / imagining it - you know the drill!

On Wednesday the nurse practitioner at my GP surgery said I have neuralgia and put me on amitriptyline to begin with, discussed gabapentin and pregabalone (spelling?) If the amitriptyline didn't work after I presented with the most severe pain I've ever experienced pretty much all over the right side of my face. Googling just keeps returning trigeminal neuralgia so I presume that's what it is as the nerve map follows exactly where my pain was.

Pain has dropped off although it is still painful. Thank goodness not as bad as Tuesday when I ended up incapable of functioning.

I find hot water bottles as hot as I can stand give a little relief. Eating is extremely difficult and today my back lower tooth is extremely tender, I'm having a lot of soup in an effort to get something nourishing in me!

I had pre-booked a GP appointment for next Thursday that I was going to cancel after seeing the NP but am now thinking I should keep it as I see most people are referred to a neurologist for suspected TN.

Can anyone share with me their diagnosis process and also tips on dealing with this pain?

Thanks Karen

[Rycr]

I constantly use BC powders it actually works better on me than any pain medicine and I have taken some pretty strong meds, seems strange but that’s what has saved me. Hope this helps you too.

[Opthealth]

Hi jnmmum, I was diagnosed with atypical tn and bilateral (both sides). The right side was the most painful and even more my wisdom tooth; constant burning pain. Same story as most; mri to rule out MS, mra, ct scans as I lost my appetite losing 1stone in 2 weeks, other symptoms too. On gabepentin; migraine meds, anti sickness meds, etc... After nothing even touching the pain I sort alternative help. Upper cervical care was helped me massively reducing my migraines amongst other symptoms including sickness and anxiety. They put me on the path of jaw alignment under a Dentist in Maryland. This was nothing short of a miracle. I have been receiving treatment for 3 years and I am now 99% well. The 1% left is nearly there as I need an implant for a back molar so that my jaw balance and cervical balance are stable. Don’t get me wrong it has been a long haul and not easy as the pain would return and the dentist would adjust my appliances. That’s how I knew it was linked because as soon as the balance was aligned the pain would go. I have had times when I doubted the treatment but I’m glad I stuck with it. It has been a costly path to take but worth every single penny. Whatever path you take I hope you reap the benefits like I have. Best of luck to you.