My poor Mum....shes 87 and has been in constant pain from a bout of shingles NINE years ago

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My 87 year old mum had shingles 9 years ago and has been in constant pain ever since...some days she's in agony...i did not realise shingles could go on for this long...does anyone else have this problem and how are they managing the pain. She has it on the left side of her head and in her left ear

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  • Posted

    Hi Trudi

    So sorry to hear about your mum, that must be so difficult for her and indeed for you to watch her suffer! Post herpetic neuralgia is extremely distressing condition.

    Get her GP to refer her to pain clinic for the management of her symptoms.

    While awaiting referral, GP can prescribe lidocaine patches which can be cut to a small size to fit on the left side of her forehead, to be used 12 hrs on and 12hrs off. Some GPs not keen to prescribe to apply on face but pain consultants advocate that.

    Possibly patch during her wake hours and at night, may be something to help her sleep like, Tramadol.

    If there is no contraindication, Lyrica (pregabalin) will help in some, although you need to discuss the side effects with her doctor with respect to her other medical history.

    Possibly Amitriptyline too added to above.

    When u see pain consultant discuss Capsaicin patch. If agreed, it has to be applied after application of local anaesthetic gel and goggles to avoid contact with eyes. It can hurt otherwise, as it's made from chilli peppers. But it's known to control pain for weeks or months in those in whom it works. This is used more commonly in the US.

    Final course would be possibly surgical like the ablation of the trigeminal nerve ganglia (this is the affected nerve if on the face). Again, pain consultant can discuss this.

    Side effects are there with all medications and interventions, it's a balance between benefits and risks and at her age, I guess the prime importance must be to give her relief from pain

    All the best.

    xxx

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    • Posted

      thanks for the information. my 74yr old aunt has been suffering from post shingles pain for 2,5yrs. worse i think because the doctors wouldnt listen to her i he beginning and put her symptoms down to some other ailment. the shingles was on her scalp and forehead and she lost all her hair inthose places and looks lime auburn victim. the pain and itching has only mildly decreased but there appears to be no relief for her. i will see if there is a local pain clinic and also look into the capsaicin patches. lidocaine cream appears to be unavailable at this time. We are in the u.k.

      many thanks

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    • Posted

      Rachel,

      I believe your Aunt could use OTC lidocaine patches 4%. They are available in the States, at least, until she sees a pain specialist. Also, topical application of a combination of Lidocaine Gel with Aloe Vera and Vitamin E oil can be soothing to the area as it covers the skin with the nerve endings that are hyperexcitable. Go on David East-Church's

      post on this forum this year and he has a recipe for making up a salve for itching.

      I hope this helps. Unfortunately, too many physicians marginalize patients, until it is too late to help them.

      Best Wishes

      Merry Juliana

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  • Posted

    Hi Trudi

    So sorry to hear about your mum, that must be so difficult for her and indeed for you to watch her suffer! Post herpetic neuralgia is extremely distressing condition.

    Get her GP to refer her to pain clinic for the management of her symptoms.

    While awaiting referral, GP can prescribe lidocaine patches which can be cut to a small size to fit on the left side of her forehead, to be used 12 hrs on and 12hrs off. Some GPs not keen to prescribe to apply on face but pain consultants advocate that.

    Possibly patch during her wake hours and at night, may be something to help her sleep like, Tramadol.

    If there is no contraindication, Lyrica (pregabalin) will help in some, although you need to discuss the side effects with her doctor with respect to her other medical history.

    Possibly Amitriptyline too added to above.

    When u see pain consultant discuss Capsaicin patch. If agreed, it has to be applied after application of local anaesthetic gel and goggles to avoid contact with eyes. It can hurt otherwise, as it's made from chilli peppers. But it's known to control pain for weeks or months in those in whom it works. This is used more commonly in the US.

    Final course would be possibly surgical like the ablation of the trigeminal nerve ganglia (this is the affected nerve if on the face). Again, pain consultant can discuss this.

    Side effects are there with all medications and interventions, it's a balance between benefits and risks and at her age, I guess the prime importance must be to give her relief from pain

    All the best.

    xxx

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  • Posted

    Dear Trudi,

    Your poor mum has Post Herpetic Neuralgia PHN. I have had

    recurrent Herpes Zoster Shingles every three to five WEEKS in my Right Ear for the past twenty-one

    YEARS and twice in my Right eye. She had Ramsey Hunt Syndrome if she had

    a facial droop during her shingles episode. I have Ramsey Hunt Syndrome.

    I am 65 years old. Unfortunately, I do not know your mum's medical history,

    but here is how the PHN can be treated if your Mum does not have severe

    contraindications

    ie. Cardiac, Liver, Kidney Diseases. This should be done by an excellent

    Neurologist,

    FIRST, she can be placed on an anticonvulsant type of medication

    Gabapentin-Neurontin

    Pregabalin-Lyrica

    These drugs are titrated up to maximize effect.

    SECOND, the neurologist can try an antidepressant.

    The ones used for shingles are Cymbalta and Venlafaxine.

    There are older ones, as well.

    THIRD, the neurologist could try Auroguard or Auralgon,

    ear drops that contain Benzocaine to soothe the nerves topically.

    I personally use Topiramate, an anticonvulsant, Venlafaxine-antidepressant, Auroguard topically,

    and Oxycodone when I have an acute episode.

    In any case, try to find a neurologist interested in pain control for shIngles.

    There are also nerve blocks, which might be difficult to achieve for your mum.

    I hope I have been of some help. I am a Nurse Practitioner in the States.

    Best Wishes to your mum and you.

    Please let me know how you make out.

    Merry Juliana

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  • Posted

    I hope you got the information you needed. I got Singles the day after Labor Day last year, on my forehead and scalp I’m 67 but was very active. Not after the Shingles. It slowed me way down. Still have the pain and the numbness but not nears as bad as the first three months. Tell your mom not to let the depression get to her. She needs to take something for it. My Eye doctor told me that Shingles was the #1 cause of suicides over 65 (not to scare anyone just for knowledge) Good Luck with mum       
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    • Posted

      I was diagnosed with shingles 7 years ago. My doc gave me the shingles immunization even though I already had it. It has slowed down the duration and repeat breakouts are very few. 

      Its it's worth a try. Hope you get better soon. Take care what a awful disease isn't it. Just wanted to share my experience with everyone! 

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