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I need help for an 83 year old man with severe PHN for 3 months

Posted , 4 users are following.

alison11183
alison11183

Hello

I am writing on behalf of my father who contracted shingles in August 2015 in the right eye extending back throught the scalp on the right side. The neuralgia started as the scabs were falling off. He had intermittent excruciating pain at first but now is getting severe pain all the time - he is unable to concentrate on anything and even distracting himself with practical tasks, whcih helped at first is not helping now. He has been taking Gabapentin for about 6 weeks now - gradually increased the dose to 6x300ml tabs per day. I have done some reading on this site and have made a note of some of the drugs mentioned that have worked for people. It does seem like a case of trial and error. What I would like to know is how long do you stay on a drug before you realise it is not working - surely if Gabapentin was going to work - he should have noticed some relief by now. Dad is also on heart medication for severe heart failure - diagnosed earlier in the year - in fact the shingles came after he became very run down after taking multiple medications that made him very sick. He is also on Acyclovir and steroid eye drops for the affected eye. In the last week he has also taken colloidal silver?? anyone know anyhting about that for PHN?? - nothing he has taken so far seems to have given him relief - in fact it seems to be getting worse - resulting in him hardly sleeping at night. He is very fed up and is not enjoying life. He has been referred to a pain clinic but I have found out it will be a 3-6 month wait!!!

My other question then is can he be referred to a neurologist in the meantime - he lives in the UK. I live in Australia and have just returned home after being there for 2 months helping him get back on his feet.

I would like to thank everyone on this site for their wonderful support despite being in so much pain themselves - you are an amazing bunch of people smile

Alison

1 like, 6 replies

6 Replies

  • jocelyne44618
    jocelyne44618 alison11183

    Posted

    Hi Al;ison,  In June this year 2015 I was hit with Shingles, caught the spots in time but the after effects are killers, the pain I swear is  worse than having a baby with out any pain medication... The pain I swear is so unbearable nothing can be done  no medication will make it go away- and I KNOW that for a fact... I have been taking Gabapentin, 6 times a day  300grms each tablet x 4, plus I have been taking  amitripterlene 2 x  40 mg plus a medication liquid auromorph which  I could not take because of a reaction so now I take OXYNORM liquid and guess what I think it works well for short periods of time. I have also been using Lidocane patches, I understand your dad has it on his face mine is also so painful its under and on my left breast and also aroundmy side and back up to my  shoulder blade., I know that there is an injection but you have to be 72 to have it  why such a silly age   . If your dad lives on his own like I do  its also hard for him (like me) because the pain is so bad when you have some one at home to cry on their shoulder, or help you put these lidocane patches around my back  my shoulders are full of arthritas and I cant reach round the back.  But if he fancy a chat on line, we can exchange our pain experiences, you/he is welcome to do that,  my own exmail address is [Email removed] oh by the way Im not some hot chick  Im a 61year old cuddly lady who is trying to work in a school at the same time as trying to not show students/staff that Im in pain.  take care,  may be your dad could look into the oromorph or  oxynorm.-  I wish there is a  magic cure because I want my old life back again with out so much pain.

    Kindest regards  Jocelyne Mason

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • alison11183
      alison11183 jocelyne44618

      Posted

      Hi Jocelyne

      Thank you for your lovely friendly message. I am so sorry you are having to deal with so much pain and working as well - Dad is also longing for his old life back again with no pain. We all want that for him. My mum is still alive so he has someone at home with him and thank you for your offer of a chat. Unfortunately Dad has not got a computer even though we have been trying for some years to get him online. Especially right now, i think this would be a great forum for him to get support form other sufferers. 

      Take care and hope you get more sustained relief soon

      Alison

  • jocelyne44618
    jocelyne44618 alison11183

    Posted

    Alison  I forgot to mention My pain spots started in June and the pain is still here now  in December
  • kimberly36176
    kimberly36176 alison11183

    Posted

    I am so sorry about your father. I tried all the medications. I hated the side effects of Gabapentin and only took for a little over a month. It never worked completely. I did try a low dose anti-depressant that made me depressed so took off that within a couple weeks. Opiates work but only for a brief time and not worth being on them for me. I did try acupuncture and the Quetenza patch - excrutiatingly painful - it did not work. I also tried nerve blocks, and unfortunately for me, they did not work either. THe only thing that has worked for me is the Spinal Cord Stimulator. I had the permanent implanted about 3 weeks ago and it has made a huge difference. Takes some time to get used to but I know this was my last resort and so glad it gives me relief. I live in the US and mine was on my left rib/bra line. This board really helped me in finding people who understand what I was going through and at least an outlet for support as most people have no clue and want to assume you still have shingles when that is not the case. Good luck and hope you find something that works soon.
    • alison11183
      alison11183 kimberly36176

      Posted

      Thanks for your support kimberley - how did you find the acupuncture - Dad has been having fortnightly treatments which certainly help him relax on the day and i know it's a holistic treatment that supports the whole body system, although unfortunately hasn't helped with the pain levels on an ongoing basis. It does seem to be unique to the individual - what works for one person may not work for another. It is such an ugly virus and so crippling for people - I do hope the SCS continues to give you relief

      Alison

    • nanny8
      nanny8 kimberly36176

      Posted

      Hi Kimberly, i also suffer from postherpetic neuralgia, ive tried all medications also, no help, ive had 2 epideral injections, no help, i just got an intercoastal injections, no help, in fact the pain has gotten worse, so bad i can hardly stand it. i have congestive heart failure, and a pacemaker, dose the spinal cord stimulator have a bad affect on the pacemaker,

      i thought i was the only one in the world that is suffering so bad, until i stumbled on this website, i am very sorry for the pain u are having, i dont feel so alone anymore knowing someone else is suffering like i am, im only 52 years old and i feel like my life is ruined, how is your appetite, i have no appetite, ive lost 70 lbs in the last 10 months i have been suffering with this illness. i am going to mention to my pain doctor about the stimulator and i hope its combatable with pacemakers, again im sorry you have to suffer so bad, like myself and hope you continue to be in less pain, thank you so much, and God Bless You, please reply , its so good to conversate with someone who understands the unbareable pain we are going though.

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