Hi, I am new here but I was diagnosed with MS early 3 years ago after a bout of Optic Neuritis. No “attacks” since, although lately I have had a few maybe-MS symptoms - a slight intention tremor, extra-sensitive reflexes, terrible itchiness. And now, a pain in my face that may be TN?
It’s very localised - along my jaw line, just up from my chin, and only on one side. I get a really brief but extremely intense shock sensation there. It is like someone just put a live wire to my face for a split second. It is quite painful but then it is gone with just a slight lingering sensation around the spot. It is always in the same place (although I do get something similar in my thigh). It may happen once or twice in a day, but then with many days in between where it doesn’t happen. But today, it’s been happening a few times an hour, sometimes a few times in a minute. Nothing in particular seems to trigger it (or not that I have worked out yet).
Most accounts of TN that I read about are way more intense than what I get. However, I have also read that drugs for epilepsy, including Lamotrigine (Lamictal) can help - and I have taken that for years because I have epilepsy. So perhaps that prevents me from having worst-case attacks?
Obviously this is something I should talk to my neurologist about, but I was wondering if anyone’s experience of TN is so specifically located every time it happens?
I was dx with TN years ago, it was pretty much as you describe. 3 weeks ago I was DX with Occipital neuralgia… same sort of thing, but pain was at side of head, now it’s over right eye and base of skull, hurts like hell just like TN. I see my neuro in a few days so will ask for different meds… The stuff I’m on isn’t touching the pain Hope you feel better very soon Lynn x
Replied but my post is gone, may be sat in mod queue
Lots of Msers have TN and I have read lots of variations. Mine is along the cheekbone and into my nose. When I get an attack it happens again and again for about an hour and then stops.
It might be that your meds are helping to damp down the pain but your GP should be able to help further. I take carbamazepine but have also used Gabapentin and amytripteline in the past.
I had a procedure to deaden the nerve a couple of years ago and this helped tremendously.
Trigeminal Neuralgia Association Uk have a website with lots of helpful information.
Jane
Hi Melby. I’m suffering with TN at the moment. From what you describe it sounds very much like TN. I get it behind my right ear and mine is linked to womens monthly stuff. When it first started a couple of years ago it was on the left hand side at the front of my head and moved recently to the right hand side behind the ear. The pain is like yours, very intense electric shocks. I am aware of it consently and take Amytriptyline. You’re supposed to take Amytriptyline all the time but I only take it when the TN starts and this usually stops it. I’ve got major symptoms going on at present and the TN is just another thing to deal with. You need to speak to your GP or your MS nurse to get this sorted. It is totally debilatating and the pain is horrendous. I hope you can get some relief soon. Linda