PHN in the trigeminal nerve, does anyone else suffer this?

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postherpetic trigeminal neuralgia, PHTN for short, I have been suffering for three years. I contacted a local support group and the person I spoke with had the same disease for 30 years, but told me she had met lots of trigeminal and phn suffers but never someone who had both.

Having both conditions is extremely challenging and now to my understanding, very rare. I am curious about different treatment options or what has helped.

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  • Posted

    I also have PHN on my trigeminal nerve, which makes for really intense headaches and eye pain. I've had the condition for 4 1/2 years now. There are some medications which are better suited to treating nerve pain on the trigeminal nerve like carbamazepine/tegretol. I found them to be quite effective at managing the pain and reducing the frequency of attacks, but after awhile the side-effects become too much to handle. 

    There are surgery options available too but they tend to come with a high risk of radiation that can lead to cancer

    Topical treatments can be beneficial. I find a capsicum cream helpful at times, although when the pain is in my eye or near my eye I can't use it then. 

    Overall I've found that my attacks and pain are closely related to stress, so I try to manage my stress levels as much as possible. 

    I hope you have better luck in finding something that works for you. 

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    • Posted

      Hi. I was just seen by a neurologist and tegretal has been prescribed for me. Not because I have TN necessarily, only periodic numbness/tingling on the right side of my face, but because I have “failed” treatment with 4 different antidepressants. The last attempt even after 8 weeks gave me unrelenting nausea. Kept hoping I would get past it. Lost 14 lbs. The neurologist would have me take amitriptyline which I have never tried, but because of my difficulties with antidepressants side effects they didn’t prescribe it. Not starting another drug until I see my NP here at home on Friday. 

      Would you be willing to share your side effect history with tegretol? Thanks so much. I am in my 3rd year of PHN. Jeaneen

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    • Posted

      Thanks for your reply. I can’t bear the thought of yet another drug that could cause nausea. I have been barely functional since taking Effexor XR for 8 weeks. The nausea has been almost worse than the pain. Almost. The neurologist I saw at the University of Michigan pretty much acknowledged that they just keep trying different drugs hoping something will help. Quite discouraging.

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    • Posted

      Ya anti convulsive, antidepressants, and Anti epelectic drugs do all have horrible side effects. So do pain killers. Surgery is around 20 percent effective and also has some really nasty side effects.

      I couldn’t find anything for massage, or physiotherapy, specifically.

      I am interested in using massage and a tens machine as it might help rebuild my nerves that are damaged.

      Things that work topical ketamine, GABA, clonicle. Topical capsicum. Topical mannitol. Topical cannabis.

      tummeric, magnesium and antioxidants work to help with symptoms or issues resulting from medication.

      I got very little success from nerve blocks or trigger point injections.

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  • Posted

    Hi Geoffrey,

    Have you considered having Endoscopic microvascular Decompression of the Trigeminal Nerve by a Neurosurgeon?

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  • Posted

    Hi - This is Roy typing - I really do not know what caused my problem, but the explanation given by the surgeon was a blood vessel which runs near the nerve bundle moved over and touched the nerve. The pain, which hit me in the back of the eye, was intense enough that I wen down the first time it hit, and made it impossible to even eat soft food on the side opposite where the pain was hitting.  After the operation I was pain free, and have been 100% pain free since the operation.

    Incidentally - my opthamologist failed to diagnose the problem - it was my dentist who gave me the diagnosis, which was confirmed by a brain MRI, although the report by whoever it was that read the MRI said I had a "Mass", which turned out to be nothing more than a "freckle". 

    Hope this helps 

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    • Posted

      Thanks, for sure. I got an mri to rule out ms, The results they are looking for are small legions to my nervous pain system at the root of the nerves near the spine. So difficult enough to find. With my condition sometimes the nerves are internally and externally damages so mvd type surgeries are less effective then other surgery options.

      Take care

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