Post Herpatic Neuralgia

[Anita272]

My husband had shingles in October 2022. He had his Shingrex vaccines in 2021. He is still battling the pain from the post herpatic neuralgia. Absolutely none of the textbook, drugs injections, etc. have helped him at all. Does anybody know of anything short of the typical things that are recommended that can possibly help him?

[AussieNeil Partner Administrator]

Your husband has my sympathy - thankfully I've found that pregabalin eventually worked for me, but not everyone manages to find a way to manage the debilitating PHN pain.

It may be possible to retrain how your husband's brain interprets the signalling from the shingles damaged nerves to other than pain. It's fairly specialised treatment and I don't know who to suggest in the USA.

Neil

[Anita272 in reply to AussieNeil]

I appreciate your input Neil. I am not aware of someone who retrains the brain here in the United States. I will look into it. Thanks for the suggestion. Glad pregabalin worked for you.

[NaturalWaze]

I had shingles many years ago, way before CLL. The only thing that helped with the PHN was acupuncture (with a very experienced practitioner).

[Anita272 in reply to NaturalWaze]

Thanks for letting me know about that. I will look into that as well. Is your pain completely gone now?

[NaturalWaze in reply to Anita272]

Yes, my pain is completely gone. I had the acupuncture soon after the shingles episode and I don’t know if that makes a difference, but I’d certainly give it a try.

[Anita272 in reply to NaturalWaze]

That is very encouraging. I’m glad it worked for you. We’re certainly going to give that a try.

[ygtgo]

I have had PHN since 2015 after a bout of shingles in my foot, it means that my mobility has been severely reduced.

Like AussieNeil, I was prescribed pregabalin at first, now I take amitriptyline each night as it also helps me to sleep better due to my tinnitus.

Other than that, I basically do ' pain management ' and use painkillers when needed.

So I would suggest seeing a GP and as for their advice as there are medical pain management programmes and pain management clinics, also there are pain management sites online that might be able to help find the resorces that may be of use.

ygtgo

[Anita272 in reply to ygtgo]

He tried pregabalin with amitryptyline with no help at all. Even morphine didn’t not help him! Pain management failed as well. I am desperate to find something to help him but it seems to be a dead end. I really appreciate your advice.

[SycamoreN]

Hi Anita, I’m sorry your husband has been suffering from PHN for so long. I know how excruciating the pain can be and totally sympathise.

I too have been struggling with PHN on my face after a bout of shingles over two years ago. I have been prescribed Gabapentin, Pregabalin and Amitriptylin none of which helped with my pain. I’ve had variable success with acupuncture but it has never lasted very long. Many of the topical creams I’ve been prescribed for post hermetic neuralgia have been unsuitable for putting on the face because of the risk of getting it in the eyes. So after several months of pain management under a team at the Royal Marsden in London I’ve been left to deal with my pain on my own.

The good news is that I’ve recently discovered that massaging my face with oils at least twice a day eases my facial pain and give me several hours of pain-free respite. Depending on what part of your husband’s body his shingles occurred, could massaging help…?

[Anita272 in reply to SycamoreN]

i’m so sorry to hear that you have been going through this for over two years now. Nerve pain is the worst. What kind of oils are you using? Like essential oils? Let me know. I’ll definitely give it a shot. My husband has it from his belly button to his back on his left side so it shouldn’t be a problem using the oils there if you could let me know which ones you are using I would really appreciate that.

Anita

[Anita272 in reply to Anita272]

Thanks, I will give it a go!

[SycamoreN]

I use castor oil mixed with essential lavender oil. I hope it helps