i wonder if i’ve joined the right place. i read all these posts about the pain through and including the mouth and that’s not me. i’ve been diagnoses with cranial-facial, postherpectic and trigeminal neuralgia and it’s my left scalp, forehead, face and nose/upper lip as a result of back to back cases of the shingles last year. the entire left side of my head excluding my ear and anything below my upper lip feels like a 2nd degree burn at all times and my skin feels like it’s stretched tight over my skull. my friends, family and co-workers think i’m crazy when i tell them that even my hair hurts-which i now keep cut at about 1/4 inch so it doesn’t move or get blown around. any breeze or temperature change is agony, can’t stand to be touched and yes, the rash is long long gone so people think that i should be ‘cured’ by now. by taking tegratol and a small dosage of methadone the taser jolts that went through my forehead and eye have been put at bay but the ‘creepies’ as i call them still attack every minute or so. they’re an electric swirling painful/itchy feeling that no amount of pressing or rubbing can make go away-i’ve rubbed my eyebrow off not scratching but rubbing instead. then after i do that i’m in God-awful pain from doing so but i can’t not press/rub when the attacks occur. and nothing helps the electric pain that comes along with these. my GP had me on gabapentin 300 x3 day, then 450 x3 day for months-nothing. then he put me on pregabalin and the side effects were atrocious and it did nothing for the pain. my Pain Management Dr has me on hydrocodone also now as it allows me to function and sleep somewhat. 2 nerve block injections did nothing except make the left side of my tongue and mouth numb so i’m now seeing a Neuro Surgeon at the university’s Neuromodulation Center (he’s supposedly one of the best in the States). after tests and MRI to ensure no tumor is sitting on the trigeminal, no atrery is wrapped around it and no signs of MS told me i have permanent nerve damage from the zoster virus. i can’t imagine years of this! i can’t stand to have the 5% lidocaine patches touching my skin so those are out. nothing topical that i’ve found so far works except that i put on OTC 4% lidocaine gel that helps for a few minutes but is agony to apply but the few minutes of relief afterwards is worth it. this has been life changing from ‘just’ having the shingles.
Since you have a burning ache all the time that may cross over into what is called atypical TN, try trileptal for it. I’ve been told (and experienced) that ATN will respond to that medication so reliably that some neuros use it as a way to pinpoint ATN vs TN.
As for itchy, I had that for awhile and found that an extremely thick layer of vaseline or baby oil lotion seemed to help. Didn’t get rid of it but made it livable.
Hello- I am so sorry to hear about your symptoms. You are not alone and it’s a great thing that you found this community. I had a viral infection which was the beginning of a now three-year journey with GPN. Both my dad and my aunt have TN which perhaps made me more vulnerable to nerve damage. My aunt talked about how slight breezes would be incredibly painful. For myself one symptom was horrible hair pain -It felt like had an open scalp wound. My family and coworkers also were perplexed but supportive. The good news is nerves can sometimes heal. I did use gabapentin but had tremendous side effects from it. It did provide moderate relief. I strongly considered an MVD. Now symptoms have gradually decreased but I do have flareups. A flareup my last two months but only be 10-30% of the original pain. Occasionally there will be a tough day or two, but it passes. I sincerely hope you find relief. Take care “Flying”
I also have PHN/TN from shingles on the right side of my face. I’ve suffered for over 2 1/2 years. I won’t bore you with my pain details as you know what it’s like. I just got the Shingrix vaccine yesterday. i have to have the booster in 2-6 months. I’m going in 2 months. I read a study of a case of a woman who had shingles on her face who developed phn/tn and was treated with acyclovir and the vaccine. So I’m of course willing to try ANYTHING since NOTHING works. Crossing fingers…