Painful PHN in head

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Hi,

Has anyone suffered from post herpetic neuralgia in their head after having shingles in scalp above right ear? I am absolute agony and have been put on amitripiline but not finding it's relieving any of the pain yet.

I wasn't diagnosed with shingles until I saw the fourth doctor! I am 34 and have young children and am struggling with the daily pain.

Any thoughts are welcomed!

Thanks

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7 Replies

  • Posted

    Yes, Kim. You are not alone. I have exactly the same thing right now. My neurologist put me on gaberpentin 600mg every 3 hours, plus amytriipeline at night along with lorazapem and zolpedem. I am a major supporter of the pharmacutical industrywink. In any case the work better than if I weren't taking them, but far from perfectly. I still can't wear clothing that touches my shoulder unless I cover it with lidocaine patches first.

    You are lucky in that your'e young and probably still have a good immune system. Hopefully your body will fight it off.

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  • Posted

    hi Kim

         i have PHN on the left side of my head and know exactly how you are feeling i have been on many drugs for this over the past 5 years some very helpful but the ones that worked best i became allergic to i am noe on Tizanidine and lidocaine patches also anti depressants. My hope came when reffered to a nurologist in London its a struggle to get there with the condition but its worth while fpr the first time i feel i am getting somewhere eventhough i am still suffering with the pains i do get a little releif now. Unfortunatley GP's dont have the experience of this condition so it takes a long time to see the right consultant i had a couple of nerve blocks through the pain clinic but they only lasted a couple of weeks i would suggest you try and get your GP to refer you to a Nurologist rather than pain clinic. Also be aware that some of the drugs for this condition are quite expensive and GP's are reluctant to precribe them sometimes im quite lucky as my GP is very supportive

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  • Posted

    Hi kim i have had PHN for going on 4yrs. Its  across the top of my head to my eye lid.and very painful, ie. burning, sore sometimes I could dig  my eye out to get rid of the pain. I take gabapentin 1200m cut these down from3600 and its no different.I also put cold water on and cold face cloth to bring down the heat. I go to a pain clinic  once every 6months but no better off  just ask how I am doing and carry one I do wish someone could get rid of this pain day in day out. 

    All this pain because two doctors didnt know what shingles was.

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  • Posted

    Hi kim i have had PHN for going on 4yrs. Its  across the top of my head to my eye lid.and very painful, ie. burning, sore sometimes I could dig  my eye out to get rid of the pain. I take gabapentin 1200m cut these down from3600 and its no different.I also put cold water on and cold face cloth to bring down the heat. I go to a pain clinic  once every 6months but no better off  just ask how I am doing and carry one I do wish someone could get rid of this pain day in day out. 

    All this pain because two doctors didnt know what shingles was.

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  • Posted

    Hi Kim. I've had PHN for 17 years, not in my head, but down one leg and under my foot. Makes getting around and wearing clothing very difficult. I too take amitriptyline, 50 mg at bedtime. It does help but you have to get used to it. I also take 1600 mg Gabapentin 3 times a day and 100mg Tramadol twice a day. Have you tried any of these meds? You might want to discuss them with your doctor. Hope you get some relief soon! Take care.

    Patricia

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  • Posted

    Dear Kim

    I've had PHN on the right side of the head and neck since September 2015, after shingles in that area. The GP didn't seem to know and the possibility of Postherpetic neuralgia. If he had known, it's possible I wouldn't be in this condition now. Pain all the time. I take Neurontin Gabarpentin about 2000 mg per day also another form of the same thing at night. What it does is build a kind of wall around the pain - I can't really feel it but I know it's there. Sometimes it seems to seep out of the right side into the left back and sometimes all across the front. I'm scratching the right side of my head constantly as if it was a painful rash. If I press in the ear it seems to help. I hope you find some reliefBest wishes

    ron9633 

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  • Posted

    Hi Kim

    I know your pain. I have PHN across the top left quarter of my face and head. I find that an icepack sometimes helps, but it depends on where the pain is and what type of pain I'm feeling. 

    I tried amitriplyine for awhile, but it became ineffective at a low dose and the higher doses turned me into a zombie. Similarly with gabapentin; initially it was great but I slowly started having to increase the dose. The side-effects got too much and I started suffering from short term memory loss and confusion. I'm working on my PhD at the same time, so any sort of brain-related side-effect is a major issue. 

    I'm not on pregabalin, and it sort of works, but it's major side-effect is depression, which is not helping at all. 

    I take regular doses of paracetemol and sometimes codeine through the day to keep the pain at bay. In general I find it an immense struggle. 

    I hope you have found the relief you need and are getting lots of support

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