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Facial neuralgia

Does anyone have experience of this ?

I have yet to have MRI and neuro appt but to add to my list of symptoms ( foot drop, weakness and cold sensations in left leg a few years ago and now in right leg … fatigue, intermittent double vision) I now have paroxysmal facial pain in the pattern of one sided trigeminal nerve ( form near ear to blow jaw). Over the counter analgesia doesnt touch it !

I understand its an unusual aspect to MS but what are anyones experience … was it considered another aspect of MS or a coincidence. ?

hi tazz

neuralgia is horrible, i feel for you.

you haven’t yet been seen by a neurologist? chase this up!

pester your GP because you’re in a lot of pain.

back in 2008 whilst i had only just started the diagnosis process, my neuro asked me to tell him my medical history.

certain things caused him to look up and start to write.

neuralgia and bell’s palsy were two.

at the very least the neuro will be able to prescribe neurological pain killers as over the counter meds do nothing for you.

good luck

carole xx

Thank you Carole … no its not much fun and only had it ten days ! At first thought it was toothache till it spread up the side of my jaw to under my eye and over to almost my ear. Then I also realised it was more coming in waves and going away for a while, then returning rather than being constant like toothache would be. I had made appt with dentist which I will go to as I do need a tooth repaired that is already dead but as the sharp pains are in both upper and lower jaw I guess he will agree its not dental/

I just got appointment for MRI today and its for next week so hopefully neuro appointment will follow soon after. I can’t get appointment with own GP … or any gp at the practice, for more than ten days so may go to OOH tomorrow and see what, if anything, they can give me. I tried cocodamol today and although it lessened the “background” deep ache it does not stop the acute sharper stuff.

I suppose that if its a less common presentation and is painful then maybe its a sorta “silver lining” in respect of getting a diagnosis sooner ???

thanks for your advice

hi tazz i myself had terrible facial pain last year and was being put down to TN as i do have MS but it turned out that i was having a heart attack which was sorted out with two stents so do try to speak to someone asap to make sure.

take care

bazza

Hi there,

Ive just been confirmed as having TN via a maxio facial consultant and head MRI scan. Mine however is caused by blood vessel pressing on nerve. The MF consultant wants neurologist to consult scan further and was referred to see neurologist due to host of other symptoms.

As for pain management paracetamol/ibroprofen and pretty much co codamol do nothing. The only thing that seems to help at the moment for me is amytriptiline. Hot water bottles (not too hot!!) side face and steaming.

It is awful awful pain. I get it behind right eye, right temple, jaw and ear and gums.

Good luck finding pain relief!

thanks for the replies… I am sure I replied to you Bazza but it seems to have disappeared ??? In it I had said sorry you had heart attack, glad its been sorted with the stents and that I was sure my heart ok … so there…just said it again

Indeed Trueman normal analgesia was useless… been to go tonight who has started me on carbazamepine… lets see how that goes… Dont think I will try hot water bottles thanks… I am often getting hot flushes at the same time as the neuralgia … feels like sunburn and swollen too … so all I want do is cradle my jaw . Thats hard to do at work ggrrrr​ its not the kind of pain you can work through easily,

fingers crossed medication works