Pots herpetic neuralgia

[KurriKurri]

I've had seven bouts of shingles since 2009 and it has left me with post herpetic neuralgia. I have amytriptiline for the pain, but it isn't working all that well and also makes me extremely drowsy for most of the day after I take it. This is really affecting my life - I find it hard to sleep, any activity that raises my temperature slightly (so washing up, baths/showers, a sunny day, shopping etc etc) sets the pain off. Sometimes it is just there with no obvioously trigger and after a particularly vile few days i am at the end of my tether. It feels like I have red hot needles and stinging nettles being poked into my face. Area affected is round my eye and the top of my head. I have a deep scar on my forehead from the first bout of shingles I had and that gets very sore. It is just a constant firing of pain and I dont; know what to do.

Anything I look up on the internet is fairly depressing - I know it can;t be cured. I wondered if anyone has had similar and found anything that helps/ I am seeing my doctor ina couple of weeks and will discuss it with him then - want to arm myself with suggestion of things to try, so if anyone has had a nythign they found useful - I;d be very grateful to hear of it. I have prescription co codamol, amytriptiline, tramadol so far. the pain killers don;t really touch it, (and tramadol makes me feel very dizzy and sick although would put up with that if it helped the pain) the amytrip. helps a bit sometimes but as mentioned knocks me out.

It is making me quite depressed - I want to claw my skin off sometimes, and my vision is sometimes a bit blurry, which may or may not be connected. Pain is pretty much constant in that I have it daily although not necessarily every minute of the day. Surgery have said that the shingles vaccination won;t help because I've already had shingles so many times (I am also 55 so fall under the age boundary) I feel that something that stopped my yearly bouts of shingles might at least stop it getting worse.

Any suggestions I can pass on to the doc. gratefully received.

Obviously my title should say post herpetic neuralgia - seems it affects my spelling too !!

My elderly mum had this and didn't get on with the amytriptiline . She was referred to a pain clinic and was prescribed this www.nhs.uk/Medicine-Guides/Pages/MedicineOverview.aspx?condition=Pain&medicine=Capsaicin.

You have to put a pin head of cream near the affected area 4 times a day and it takes a while for it to work - if I remember correctly . I don't think it totally removed the pain but it significantly reduced it .

Huge sympathy ,it sounds ghastly .

I think something like Gabapentin or Lyrica would be better.
I used to take Gabapentin for nerve pain, pins and needles, shooting pains, burning skin etc.

Many thanks both - I am compiling a list of thing so I can go armed to the GP - have felt a little fobbed off in the past.

How about asking to be referred to a pain clinic ?

Oh ,and ,maybe tell GP that it's stopping you sleeping ? The symptom that disturbs sleep seems to be a flag and taken more seriously than pain during the day .

I have TN (trigeminal neuralgia), facial nerve pain not caused by shingles. I was first put on carbamazepine which made me drowsy and ill so I was put on gabapentin instead and I find I can tolerate it better.

NICE guidelines suggest treating with paracetamol and codiene. This I find bizarre as neuropathic pain does not resond to standard painkillers usually.

It does suggest other routes of treatment though. Kurri, this might be worth printing and taking with you.

cks.nice.org.uk/neuropathic-pain-drug-treatment#!scenario

This sounds awful. I've recently switched from gabapentin to pregablin to try to reduce side effects and it is helping my nerve pain. I take a very small dose of amitriptyine at night (10mgs) which just helps me to sleep through and keep my leg in the bed.

Both gabapentin and pregablin need time to build up and adjust to but well worth it IMO.

DH has nerve pain in his lung/back, he uses Noratripyline (sp)

Thank you all for your kindness and suggestions, I will def. print that out Charley, - loads of sympathy to those suffering similar - it is very wearing and debilitating IME. Will also enquire about pain clinic ginger, thank you.

Kurri do you have Lupus, or am I mixing you up with someone else?

No not lupus Coco - although I have had cancer and am on cancer meds-my immune system isn't in the best shape - hence the many bouts of shingles.

Sorry, don't know why I thought that