Neuralgic pain or something else? Advice please.

On Monday, I experienced a horrible shooting pain, starting in the bit between my nose and my upper lip, going up behind my nose and ending halfway up my head, behind my hair. I was eating some toast the first time it happened and putting moisturiser on the bit between my nose and my upper lip the second time. It was so strong that it made me cry out both times. I can make it come back, but not half as painfully, by pressing a particular spot between my lip and nose. It came back by itself, very painfully, twice this morning - these two times I was just talking.

Has anyone experienced neuralgic pain? Is it as I experienced, a shooting pain, following a very distinctive pathway? I’ve never experienced anything like this before and I’m wondering whether it’s just another MS symptom or whether I should make an appointment to see my GP. I don’t want to do anything about it if it’s just a standard symptom - I’m already taking so many pills I rattle.

i had an ache in my jaw which i put down to neuralgia.

expected to move to somewhere else but it didnt.

after a week i went to the dentist but as soon as i arrived in his surgery it disappeared.

anyway he found a cavity at the opposite side of my face!!

since this cold weather started i’ve been having earache, probably neuralgia but i can live with this especially because i got a new hat, really cool trapper style, green with a pattern.

so i wear it outdoors and even inside.

it’s a strange beast this ms or is it me that is strange?

carole x

I do have an MS nurse, or rather a set of MS nurses (that sounds better than it is). I left a message on their answer phone this morning, after listening to their message. After a few preliminaries, this said

“Please be aware that we are currently working through a backlog of calls. If your call is urgent, please contact your GP. If your call concerns a report or appointment, please contact your neurologist’s secretary on (gives number) and ask to be put through to the appropriate person.”

So I won’t be holding my breath, waiting to hear from them. Do other people get such unwelcoming messages on MS nurses’ answer phones or are mine special?

The wonders of the internet! I think it’s probably ‘trigeminal neuralgia’, a reasonably rare symptom of MS.

We have two MS Nurses their phone line is usually open three times a week and the times vary, sometimes morning sometimes afternoon. If you ring and it is not manned there is a message telling you when someone will be available to take calls. There is no facility to leave a message. I wonder what NICE would think of that…please don’t misunderstand I am not blaming the Nurses, they have a heavy workload and can’t be expected to do everything.

I do blame the state of our National Health Service and the consecutive governments who can’t seem to get it right.

I had a pulsing pain on the tips of my ears moving to the back of my head that lasted four weeks, it was horrendous but I did get relief by simply taking ibuprofen. I’m sure you have tried all the obvious things, what works for one doesn’t always work for others.

Hope you get some relief soon Sewingchick and your Nurse gets back to you soon.

Jan x

I’ll post on here when one of them does (could be any day now).

hiya sc

if it is tn-which is horrendous-have u tried changing the temp of area affected? either warm of very cold cloth on cheek? maybe worth a try…

cold works for me but everybody different as we know!


When my TN was at its worse I read that heat might help. My now ex husband came downstairs one night to find me pouring boiling water on a flannel and then putting it on my cheek. The TN pain was so bad that I was beside myself and totally unaware that I was burning my face in a desperate bid for relief


The MS nurse rang me back this afternoon. She asserted that the pain was nothing to do with my MS and I should see my GP if I was worried about it. I saw a physio who I exercise with every week. She told me the pain was in the wrong place for it to be TN but it sounded like MS related pain in some nerve. She didn’t know which one. The Internet suggests it is neuralga in the Supratrochlear nerve. I mean this nerve goes where I am getting the pain.

Other people seem to have much better experiences with MS nurses than I do.