TN and other symptoms

Hi everyone, hope your all doing the best you can manage. Can I have your advice please. I have been suffering from TN continually for the last four months and have had my meds changed from Amitriptyline to Carbamezepane to try and deal with it. I started to cut the dose down from 200mgs at night to 100mgs when I thought that it was getting better. That only lasted three days and I had to up the dose again as it wasn’t. I am seeing my MS nurse again in a couple of weeks and have lots of issues to address. Has anyone else had TN for this long? Also my right foot is tipping over completely and I am unable to move more than a couple of feet at a time. Will FES help this and allow me to walk a little bit further? Will it be worth trying to get an MRI scan, I have only ever had one and that was when I was DX’d 14 years ago and this progression has been severe and aggresive. I am fairly sure there are alot more lesions now and will this add to the TN? Got loads of other things happening but the TN is the worst because it is scream out load pain. Advice from this Forum would be appreciated. Linda x

Hi Linda,

My TN wasn’t constant – thank goodness – but I suffered with it once or twice a week for many years.

I took amytiptelene AND carbamezepine at much higher doses than you report.
I had a surgical procedure on the nerve but still take 600mg of Carbemaz at night.

I would discuss increasing the dose with your GP or nurse and see what they think. They will want to try drug therapy before any surgery is discussed so an increased dose is probably the way to go. This is not a nice condition to live with.

As for the MRI – I’ve only ever had one. I’m not sure how much it will help you clinically to know that you have more lesions.

Jane