Hi, looking for others experiences of Atypical TN symptoms and advice . I’ve had the constant bilateral ache/tightness / burning/ tingling across all 3 branches. Alongside shooting nerve pain in random teeth, eyes, forehead since April. Triggers for additional pain are talking, eating, looking at screens.
I’m on lamotrigine - currently 225mg but increasing each week. So far, no change. I’m wondering what medications others have found that helps ? Do pain free episodes occur, but does it still flare?
What are others experience of managing work. I’m off sick at present but unsure how it can be managed in the future.
Thanks in advance.
It’s such a horrible pain to deal with. Have you tried using eye drops, as I find mine are very dry and without them it causes pain just looking at a screen, book, phone. I usually use them a few times a day. For the face, mouth pain, I tried carbamazepine but I was allergic to it. At present I’m on gabapentin for neuropathic pain and spasticity with baclofen, it takes the edge off but I still experiencing the stabbing pains in my forehead, eye , ear and throat. I feel for you, as it’s the worst pain to deal with. I’m waiting to be seen at the pain clinic. Sorry I can’t help any more, but hope the eye drop ease one area for you. I will attach the ones my optometrist recommended.
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Thank you, it’s certainly relentless. I also take 525mg pregablin (didn’t tolerate gabapentin) and 30mg baclofen for usual MS symptoms. I had hoped the combo would have helped by now 
.
I’m also awaiting pain clinic so hopefully they have some different options.
I will try the eye drops.
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you don’t have to wait too long before you’re seen at the pain clinic! I’ve now been waiting 13 weeks. I’ve noticed it slowly getting worse, at the start a low dose of gabapentin got rid of the pain but now I’m on 1500 mg for that and neuropathic pain in legs with baclofen. It’s just taking the edge off.
I’m sure you’re just as frustrated, everyone seems to feel it’s ok to leave someone in pain.
I hope the eye drops help, oh and you can try a tint on your glasses if you wear them.
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That sounds really tough to deal with - I am sorry. I just wanted to wish you well and hope that you get relief soon.
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