Effectively- post-neuropathy pain after shingles on your head

Posted by auntielisa @auntielisa, Sep 4, 2024

Hi all, I'm curious if anyone has found effective ways to deal with post-neuropathy pain after shingles on their head. If you've successfully managed it, I'd really appreciate any tips or treatments that worked for you. Thanks!

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Profile picture for psing @psing

Sorry to hear about your trigeminal neuropathy.
Like a few of the other commenters here I have had trigeminal neuralgia as a result of a bad bout of shingles probably 14years ago now. I was initially put on a healthy dose of Lyrica for about 2 years and that helped a lot. I did decide to stop taking it and I went on a course of applying capsaicin cream 3 times a day for 30mins at a time. I did that for about 3 months.
The pain from the capsaicin cream was so intense I believe it causes your brain to change the way it registers pain and the end result is the pain from the trigeminal neuralgia becomes manageable. I have not taken any Lyrica or medication for 12 years and not applied capsaicin cream for probably 10yrs. While my skin is still hypersensitive in some areas and dull in other areas. I rarely have spikes of pain (maybe once a year for secs) and it has a very, very minor impact on my daily life.
It is tough to keep applying the capsaicin cream but the results were well worth it.

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@psing Having had Post Herpetic Neuralgia (following Shingles) for nearly nine years and I can honestly say, “You have my sympathy and prayers”. This has been a test like no other! It was mistakenly diagnosed as Trigeminal Neuralgia, prior to the manifestation of blisters. I’m very curious about your experience using capsaicin. May I ask if you applied it to your forehead? I can’t imagine smearing it in my hair….and trying to get it washed out….three times @ day. Must admit to being apprehensive about getting it near my eyes. Thanks!

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Profile picture for 1977lizzy @1977lizzy

I have post-herpetic neuralgia/trigeminal nerve damage. Scalp/forehead/eye/side of nose shingles 12 years ago. Intense itching around eye/scalp mostly at night. My routine helps a lot, but sometimes itching is unbearable & my eye is often inflamed/itching. I've taken gabapentin twice daily for 11 years and used ice packs to sleep at night. I use a compound cream daily on eyelid. I also take Hydroxyzine HCL at night for intense itching. The entire area is still irritated after 12 years. In spite of everything, I have to be extremely careful to not touch area where the blisters were because it will "set off" intensive Crazy itching. All of my drugs were prescribed by my neurologist except the compound cream. That I got from an anesthesiologist/pain specialist. If you'd like the cream ingredients & dosages, let me know.

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@1977lizzy Would you end me the ingredients for the eye cream. I am having intense itching on the bottom of my eyelid from post herpetic trigeminal neuralgia and I am helpless to stop myself from furiously rubbing it which leads to inflammation. I take 1800 mg of gabapentin daily to stop the agonizing attacks, but the itching persists. Thanks much.

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Profile picture for margiem @margiem

@psing Having had Post Herpetic Neuralgia (following Shingles) for nearly nine years and I can honestly say, “You have my sympathy and prayers”. This has been a test like no other! It was mistakenly diagnosed as Trigeminal Neuralgia, prior to the manifestation of blisters. I’m very curious about your experience using capsaicin. May I ask if you applied it to your forehead? I can’t imagine smearing it in my hair….and trying to get it washed out….three times @ day. Must admit to being apprehensive about getting it near my eyes. Thanks!

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@margiem Capsaicin was not recommended because my blisters & nerve damage were around my eye/forehead/side of nose. The compound cream was ordered by an anesthesiologist/pain specialist. After 14 years, I still have severe itching around the eye and entire scalp on one side. I don't use it in my hair. I continue with Gabapentin and, at night, 100mg Trazodone for sleep & Hydroxyzine for itching. I keep frozen gel compresses in my freezer, which I use on my scalp to help me sleep if itching is unbearable. I use the cream mostly on the eyelid, the corner of the eye & into the eyebrow.....the lidocaine numbs that area. I have consulted with neurosurgeons at two university medical centers, and they offered an implant that was very interesting, but I decided not to pursue it. The compound cream is Gabapentin 6%, Lidocaine 5%, Amitriptyline 3%, Clonidine 0.2% I've used it for 10 years. I should mention that I did not get the shingles vaccine until After several years. I'm a believer now!!! I certainly wish you the best. Jan

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Profile picture for kathleenintexas @kathleenintexas

@1977lizzy Would you end me the ingredients for the eye cream. I am having intense itching on the bottom of my eyelid from post herpetic trigeminal neuralgia and I am helpless to stop myself from furiously rubbing it which leads to inflammation. I take 1800 mg of gabapentin daily to stop the agonizing attacks, but the itching persists. Thanks much.

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@kathleenintexas My compound cream was ordered by an anesthesiologist/pain specialist. It's Gabapentin 6%, Lidocaine 5%, Amitriptyline 3%, Clonidine 0.2% I've used it for 10 years around my eye. The Lidocaine numbs the area. At bedtime I take Trazodone for sleep and Hydroxyzine for itching. I keep frozen gel compresses in my freezer and frequently sleep with one over my eye/forehead area. They've helped me tremendously. I hate to hear you have the horrible itching. I rubbed my eye so intensely I tore something & had to have eye surgery. After 14 years, I know I have to manage as best I can & live with it. I didn't get the vaccine until After the shingles. I also take Gabapentin. The best of luck to you. Jan

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Profile picture for 1977lizzy @1977lizzy

@kathleenintexas My compound cream was ordered by an anesthesiologist/pain specialist. It's Gabapentin 6%, Lidocaine 5%, Amitriptyline 3%, Clonidine 0.2% I've used it for 10 years around my eye. The Lidocaine numbs the area. At bedtime I take Trazodone for sleep and Hydroxyzine for itching. I keep frozen gel compresses in my freezer and frequently sleep with one over my eye/forehead area. They've helped me tremendously. I hate to hear you have the horrible itching. I rubbed my eye so intensely I tore something & had to have eye surgery. After 14 years, I know I have to manage as best I can & live with it. I didn't get the vaccine until After the shingles. I also take Gabapentin. The best of luck to you. Jan

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@1977lizzy
Thank you so much for the ingredients in the eye cream. I'll work on finding someone to order it. That itching is so bad; it's like 20 mosquito bites in one place. I have reduced the gabapentin from 1800mg a day to 1200mg and so far it's OK. I don't have the intense attacks, but I have 'zinging' in my head and, of course, the itching. I still have hope that eventually the myelin sheath on the nerve may heal. At least it is not the unbearable pain I first experienced. Some people talk about a constant burning pain, so TN takes different routes with different people. Mine were attacks of a couple minutes, but they drove me to my knees and all I could do was scream and cry. Horrible pain. Thankfully the gabapentin stopped them. I was nervous about reducing the dosage, but no attacks so far. I just want to take as little gabapentin as I can; have read about possible dementia from it and that is scary.

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Profile picture for kathleenintexas @kathleenintexas

@1977lizzy
Thank you so much for the ingredients in the eye cream. I'll work on finding someone to order it. That itching is so bad; it's like 20 mosquito bites in one place. I have reduced the gabapentin from 1800mg a day to 1200mg and so far it's OK. I don't have the intense attacks, but I have 'zinging' in my head and, of course, the itching. I still have hope that eventually the myelin sheath on the nerve may heal. At least it is not the unbearable pain I first experienced. Some people talk about a constant burning pain, so TN takes different routes with different people. Mine were attacks of a couple minutes, but they drove me to my knees and all I could do was scream and cry. Horrible pain. Thankfully the gabapentin stopped them. I was nervous about reducing the dosage, but no attacks so far. I just want to take as little gabapentin as I can; have read about possible dementia from it and that is scary.

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@kathleenintexas I, too, have concerns about Gabapentin and dementia. So far, I have passed all the tests. I've taken it for 14 years and have been able to reduce it to 600mg daily gradually. With the cream on my upper eyelid area, I get by fine during the day, but the horrific itching occurs mostly late evenings. I have to be super careful not to touch that area, or it will set off the itching at any time. For about 6 years, I could only sleep with a frozen gel compress across my scalp. I would use a couple each night, and it helped tremendously. I had that severe nerve pain for the first two months and would get on my knees and scream into a pillow. My pain has mostly subsided, but the itching is awful.

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