hi all haven’t been on for a while and can’t seem to use my original name as it won’t accept password anyway i’ve been dx since march 2012 and currently experiencing my first episode of TN and must admit it’s the worst pain i think i’ve had so far so i’m wondering if everyone gets it bad or any tips for making it a bit easier when it’s about?



Hi Baz

I’m not dx’d with MS yet (going through the process at the moment to find out what’s wrong) but I have had TN since Feb this year, it was horrendous until I got it under control with Gabapentin. The Gabapentin has been great for me so if your GP hasn’t given you anything for it I would be making an appt very soon. As for coping with the pain when it was bad, not a lot helped I’m afraid, I just just to bury my face in a towel until it passed. I didn’t really eat when it was bad and only drank through a straw so that nothing touched that side of my face. I do feel for you and the only advice I can give you is you is to try and get some medication to get it sorted. I’m not a big one for taking loads of tablets if it can be helped but didn’t hesitate with this, I just couldn’t have carried on with the pain.

i wish you well and hope that you don’t have to put up with it for very much longer, good luck with getting it sorted.

Sarah xx

Hi Baz,

I’m really sorry you are experiencing this. It really is horrendous. As you say, beyond anything I’ve experienced.

I seem to have an odd form. I’ve had 4 bouts so far of 45 mins each which seems to have been set off by spasm like sensations in my head that I’ve been battling against for 6 months. Getting these under control seems to be the key to stopping my “do’s”.

As for stopping the pain when it hits I’ve been told there is nothing to do but ride it out. Sorry probably not what you wanted to hear. I wasn’t too chuffed either.

Like Sarah I tend to bury my head in something. Not sure it helps with the pain but it helps me cope. I also repeat the mantra that it is going to stop. And I clock watch! I know it will stop pretty much on the 45min mark.

I really hope you find something that helps. If you do please let us know.

Take care

Isn’t life rubbish…put this post up yesterday after being told I had TN and guess what today…taken into hospital after having a heart attack!!!.. So as I said isn’t life rubbish

OMG! You must be ok if you are back on here Baz but what a shock that must have been!

I hope you feel better soon. Take it easy and get plenty of rest.

I hope you have family helping you and taking care of you if you are back home?

I was just about to suggest the drug ‘Tegretol’ for the TN until your post above.

Gabapentin/pregabalin/amitriptyline will help nerve pain but i’ve read on here that suffers say Tegretol is better for TN.

I wish you a speedy recovery.

Could the TN pain be linked to the heart attack at all or definitely seperate problems?

Take care


Hi Baz, so sorry to hear that news, hope things improve for you soon…blimey, still a shock to hear it happened.

Get well soon

Sarah xx

Hi all and thanks for replies

thats me home from hospital now for 6 days and regards meds I’m on most of them but I think the most annoying thing is I can’t drive until 4 weeks from attack and being a taxi driver this does hurt my ability to earn a wage…just keep wondering why after being dx with MS I had to have a heart attack… Don’t think I’ve been that bad I deserved to have this as well… Sorry to you all but this just gets me down

thanks for reading this moan


Good evening Baz

When the TN comes on I have an op called a Radio Frequncy Lesion it’s not a cure and, I am told it does not work for every one, but ity clears it up for a while.

Hello baz

I don’t know if it was mentioned to you in hospital but depression is two or three times more commnon in people who have experienced a major heart event. Don’t be afraid to ask for help if you feel that you need it in the future.

Take care x