Post-herpatic neuralgia

[Artman]

30+ years after shingles on forehead and around eye attacks becoming more frequent and more severe. Cannot find a forum specific to it. Wonder if anyone here is familiar with the problem. Thanks.

[littlebear]

Hi Artman,

I live with postherpetic neuralgia (PHN) following shingles in 2004 (aged 27), in my torso. As it caused pain in my spinal nerves and up my spine it has since morphed into its own chronic neuropathic pain condition, so I have nerve pain in more places than the original shingles place now. I have allodynia to air movement and cold temperatures; I'm on pregabalin (lyrica), which has really helped with the air movement, and duloxetine.

There are a couple of active (closed) groups on Facebook if you're interested?

[Artman in reply to littlebear]

Thanks for that littlebear.

Your comments are very interesting. My pains have gradually spread from initial shingles area and now affect much of my head. It is all sensitive to extreme cold and heat and also draughts so I wear a hat whe n outside.

I'm on gabapentine which helps.

I,m 83 and not into things like Facebook but will see if I can find the groups you refer to.

Many thanks.

[littlebear in reply to Artman]

Hi Artman,

No worries about Facebook. There are others with PHN on here I'm sure. There is also a forum via Patient.info, patient.info/forums, which might be of interest?

I've read quite a lot about how nerves work, to help me understand my condition. There is something called plasticity, which is how our nervous systems adapt and change. However when it goes wrong, maladaptive plasticity, it can go very wrong. For us our poor healthy nerves near the damaged ones try to compensate but get it wrong. I find it easy to compare it to frayed electrical wires and a faulty/short circuit. Our brains then try to make sense of this scrambled information and send down their response, which is then interpreted by the damaged nerves etc. I've recently read that some nerves change their function to transmit pain, rather than temperature, when they, or their neighbours, are damaged.

It's very difficult living with chronic nerve pain/PHN isn't it? I really struggle with the cold and now have to work from home in the winter. I like M&S heat gen layers - you can't wear them on your head though!

[KatieRL]

Thank you so much for your post Artman - I thought it was my imagination, but it seems after nearly 15yrs suffering PHN on the left hand side of my torso, under my ribs and on my back where I had actual shingles, the pain is now spreading to other areas of my shoulder/back where there were no shingles. The pain is much stronger and can keep me out of action for two/three days at a time.

I take Lyrica (300mg) and Tegretol (200mg) regularly and when the pain hits badly Oxynorm and Oxycontin. My pain consultant has said there is nothing further she can do to help my pain - it's really frustrating but either I find another consultant who may or may not be able to do more, or stick with it and deal with what is happening.

This is a great website and I have drawn great strength from it, however the Facebook groups are excellent too and well worth seeking out. Your local library should be able to help you with this , either give them a call or have a look at their website. I wish you well and thanks again for your post. xxxx

[Artman in reply to KatieRL]

Greetings KatieRL,

The one thing we all have in common Katie is knowledge of just how painful PHN can be - and how debilitating. So we can all sympathise with each other.

I think the treatment of body PHN is rather different to the treatment of head PHN. It's a different part of the nervous system which has to be treated. So I am unable to help you concerning the specific treatment.

But I am not impressed with any GP or consultant who says nothing more can be done. I really do think you should try to get a second opinion - alternative professional medical advise.

Sorry I cannot be more helpful but do stick with it an pester your medical people until they do find some way of relieving your pain and discomfort.

Cheers

Artman