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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Trigeminal Neuragia

A MyMSTeam Member asked a question 💭
Preston, UK

Hi all, has anyone experienced Trigeminal Neuralgia, ive recently been diagnosed with this. My teeth and mouth are so painful, plucking my brows hurts and my head is also sore.

Ive been put on Carbamazapine but it doesn't seen to be helping at all.

June 5
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MyMSTeam

Trigeminal neuralgia (TN) is unfortunately very common in people with MS — it's actually around 400 times more common in the MS community than in the general population. So while it's miserable, you're definitely not alone in dealing with it.

TN happens when there's damage or pressure on the trigeminal nerve, which Show Full Answer

Trigeminal neuralgia (TN) is unfortunately very common in people with MS — it's actually around 400 times more common in the MS community than in the general population. So while it's miserable, you're definitely not alone in dealing with it.

TN happens when there's damage or pressure on the trigeminal nerve, which branches throughout the face. This explains why so many everyday things — like plucking brows or even brushing teeth — can trigger intense pain.

Many MyMSTeam members have described TN pain as some of the worst they've ever experienced, with sensations ranging from electric shocks to feeling like all their teeth are about to fall out. So what you're going through is very real and valid. Regarding Carbamazepine not helping — it's really important to go back to your neurologist and let them know. There are other medication options worth discussing, including:

- Oxcarbazepine (Trileptal) — a commonly used alternative
- Gabapentin (Neurontin)
- Pregabalin (Lyrica)
- Lamotrigine (Lamictal)
- Baclofen — a muscle relaxant sometimes added to boost other medications

Some MyMSTeam members have had success with Tegretol and Trileptal specifically.

If medications aren't providing enough relief, there are also surgical options available that your neurologist can discuss with you. The key is making sure your TN treatment doesn't interfere with your existing MS treatments — your neurology team can help navigate that.

June 5
A MyMSTeam Member

Does lupus cause blisters in your mouth can you make the print larger to read

June 7
A MyMSTeam Member

I have hadRRMS since 1999 I would like to know the difference in all the different types of m.s

June 5
A MyMSTeam Member

Hello @A MyMSTeam Member, yes I have had it a few times, worst pain ever! I took carbamazapine and gabapentin, it didn’t take away all the pain but made it more tolerable. Check with your ms nurse about dosage. I now have acupuncture for neuralgia in face and it does help me. Take care 🤗💜

June 5
A MyMSTeam Member

Its like my teeth are hurting and just the slightest touch to the skin hurts too. Yes the weather can aslo affect it in my opinion

June 5

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