Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Trigeminal neuralgia

Jan 13, 2017 6:18 PM

Has anyone dealt with trigeminal neuralgia? I've been dealing with it for the past 4 days. It is extremely uncomfortable to say the least. My doc gave me a shot of Toradol, started me on notriptyline and Flexeril. What has helped you with your pain?

Jan 13, 2017 7:31 PM

I'm really sorry to hear that, it really isn't a nice condition.
I have suffered with trigeminal neuralgia since April 2015, I went thro a very stressful time which the doctors think started it. To say it's extremely uncomfortable is putting it mildly!

I have been on pregabline, carbamezapine, gabapentine and another one which I can't remember the name of but none of them helped me, I was admitted to hospital twice because of the pain and once (3 days after the first time) for withdrawal when the doctors stopped all meds dead and most of them you are meant to ween off them! Wasn't a pleasant experience at all!

The second time in hospital they upped my dose of amitriptyline from 25mg to 100mg and gave me morphine mst 30mg at night and 20mg in the morning along with lidocaine plasters to numb my left check when the pain is unbearable.

I try to do jaw exercises and gental stretches for my neck and shoulders....when I'm in a lot of pain or very stressed I grind and and clench my jaw and my neck and shoulders tense automatically, I don't realise that I do it so I get a hell of a lot of pain in my neck and shoulders as well.

All I can really say is that finding the right meds for you will be a process of elimination to see what will help and what won't, everyone is different and we all react differently to meds.
Also you might want to do the jaw exercises but I very strongly recommend you do shoulder and neck stretches to prevent any possible pain in that area from being tense from the neuralgia pain.

I'm not sure what else to say off the top of my head but if you have any questions please ask and I'll answer you best I can.

Sending you positive vibes and warm healing hugs xx

Ready to start relieving your pain?

Join Community