Shingles & Postherpetic Neuralgia

peteofherts

I have been experiencing a lot/severe Postherpetic Neuralgia lingering Pain since a bout of shingles about 8 weeks ago.  It is bad enough to wake me during the night, so I am also very sleep deprived.  

I am already taking Pregabalin for management of spasm (and a cocktail of other drugs). Pregabalin is also typically used for treating neuropathic pain like PHN.  Pregabalin can be difficult to tolerate as it is a sedative drug, so increased doses are even harder to tolerate.

Anybody with experience of CP + PHN pain, please feel free to offer advice.

Thanks!!!!!!!!!!

Alex_Alumni

Hello @peteofherts thanks for sharing how things have been for you, I'm sorry to read about the severe pain and sleep deprivation you've been experiencing lately. I'll mark this post as unanswered so that it will encourage other members to share their thoughts. 

Although I have CP, I don't have experience of PHN pain, so I can't offer advice directly. Have you been in contact with your GP and other specialists about it all?

I'm also sorry to hear about your bout of Shingles, has that cleared up now, or do you think the pain is a lingering symptom?   

peteofherts

Yes, the pain is a lingering symptom of shingles.
GP & Neurologist can only say 'increased Pregabalin' at this stage.

Richard_Scope

Hi @peteofherts
Thanks for your post. It seems like your GP and Neurologist are following standard treatment lines here. With you already taking Pregabalin and having a certain level of tolerance for it, an increase in dosage guided by your medical professionals is the move.

There are other things that you could suggest to your GP and try:

Lidocaine plasters

Lidocaine plasters are sticking plasters that contain a local anaesthetic. They can be useful when pain affects sleeping or daytime activity. They cannot be used for more than 12 hours at a time.

Capsaicin cream

Your GP can prescribe capsaicin as a low-dose cream for nerve pain. It can stop the nerves from sending pain messages to the brain.

You apply it to the affected area a few times a day, but only when the rash has healed. It works by changing the way the nerve endings function.

High-strength capsaicin patches can also be used to treat post-herpetic neuralgia. They're available at specialist pain clinics and are applied as a single treatment in the clinic or at a hospital. If effective, the treatment can be repeated, usually, every few months depending on how your symptoms have improved.

It might be worth exploring these options with your GP.

peteofherts

Cheers Richard, I will go back to the Dr.  Its been about 12 weeks now and I am still waking in pain.

Elizabethb

is this site safe?

Elizabethb

Facial postherpetic neuralgia for 7 months now migrating into the nose, upper palate, inside left cheek, left eye, left ear - relentless...want to contact like-minded sufferers of this horrible condition and what if anything helped????? Desperate here....need help. GPs have nothing to offer but the usual range of meds. X

Alex_Alumni

Hello @Elizabethb and welcome to the online community, thanks for reaching out. I'm so sorry to hear how let down you're feeling by your GP, and I hope we'll be able to help you feel supported and listened to here.

Something which might help in terms of feeling heard is perhaps looking into an advocate for your health, care and wellbeing. If it's not something you've considered before, I've shared some resources below: 

You contact social care services at your local council and ask about advocacy services. Find your local social care services.

POhWER is a charity that helps people to be involved in decisions being made about their care. Call POhWER's support centre on 0300 456 2370 for advice.

The Advocacy People gives advocacy support. Call 0330 440 9000 for advice or text PEOPLE to 80800 and someone will get back to you.

VoiceAbility gives advocacy support. Call their helpline on 0300 303 1660 for advice or use VoiceAbility's online referral form.

I hope looking into this might be useful for you, in the meantime, have you spoken to your GP about the concerns you have around the usual range of meds, and why they might not be effective for you?

Let us know if you feel we can help with anything further, and we'll do what we can to help

Alex