PHN in the trigeminal nerve, does anyone else suffer this?
Posted , 4 users are following.
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.
0 likes, 11 replies
Geezee geoffreyPHN
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.
jeaneen09890 Geezee
Posted
Would you be willing to share your side effect history with tegretol? Thanks so much. I am in my 3rd year of PHN. Jeaneen
Geezee jeaneen09890
Posted
The worst was the depression, concentration and memory problems. It became very difficult to function.
jeaneen09890 Geezee
Posted
geoffreyPHN jeaneen09890
Posted
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.
roberta91146 geoffreyPHN
Posted
Have you considered having Endoscopic microvascular Decompression of the Trigeminal Nerve by a Neurosurgeon?
geoffreyPHN roberta91146
Posted
roberta91146 geoffreyPHN
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It was just a thought anyway. My Husband had the operation in 2009 for his TN with complete success. He has been pain free since then. Hope you can find an answer to your pain.
Roberta
geoffreyPHN roberta91146
Posted
roberta91146 geoffreyPHN
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
geoffreyPHN roberta91146
Posted
Take care