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mervyn3507 mervyn3507

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  • paulbklyn paulbklyn mervyn3507

    Hi Mervyn

    I came across while googling new medicines for PHN, a therapy called the scrambler came up  never heard of it, go good reviews.

    I myself have the Nevro spinal cord stimulator, my pain is down but they 

    havent made any adustments yet, hopefully this Wed.

    Good Luck, let us know how your doing, best of luck

    Paul

    • frankjs frankjs paulbklyn

      I just went through 10 treatments for 10 days of Calmare (Scrambler) therapy and had high hope for some relief. I do believe there is excellent potential with this but in my case I had only intermittent results. My pain and stiffness extends from the mid point in my back to the midpoint in front and from waist to just above my diaphragm. The therapy has had significant results in areas of pain and neuropathy relief. My theory; In my case I believe that do to the wide spread area of various pain and movement of pain it was hard to identify the exact locating of the sensors, at times we would eliminate pain but it came back in a few hours. Obviously, I would like to continue but do not have the time, if I had a local clinic I would continue to pursue. There is a lot of hit and miss in my case but as I said I think there is potential and it is non-invasive, non-drug and no side effects.

      Though there has been some research, the trials on PHN are sketchy and the only study being conducted directly related to PHN is at the Mayo clinic and maybe they will arrive at a successful protocol. I do think if my pain had been more concentrated in a specific area the treatment would have been much more successful. 

    • babs99203 babs99203 frankjs

      I'm sorry Frank, let's hope that something will change due to research. I believe someone else had posted that they were trying it too, but I don't remember in which forum I read it. I believe it was a woman and I'm thinking of a different person. It would be helpful for her to know this, but I feel badly for you.

      Did you see my post about Dr. Ted's Pain Cream? It's an interesting theory and option. Read the article and tell me what you think.  Take care.

  • anon987654 anon987654 mervyn3507

    Hi Mervyn, Yes there's a drug in development at the moment that looks promising: http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_5-2-2014-12-24-59

  • ruth57682 ruth57682 mervyn3507

    Haven't really found anything new.  Went to a pain management doc and about all he wanted to do was inject cortisone into 2 spots in the spine and hope to temporarily block nerve pain.  Other alternative was to implant something and have wires into the spine to control pain. Anyone tried this stuff.  I am reluctant to do these invasive things as I had a cervical spine fusion just before I got shingles.  ( Propably the reason I got this was the trauma to the spine which I believe lowered my immune system). So, mervyn, the only minimal temporary relief I have found is a 4%

    • paulbklyn paulbklyn ruth57682

      Hi Ruth

      I had the Spinal Cord Stimulator implanted 3 monhs  it has cut down on my pain. It has three programs  so far when I increased program 1 i got more pain, program 2 I got increased pain  few days will try program 3.

      Next week I have an appt. with my dr and the tech.

      I need a mri on my foot, no local imaging place will do it,

      seems only the hospital is equiped to do.

      Hope this helped

      Feel Better

      Paul

  • ruth57682 ruth57682 mervyn3507

    Melvyn, really nothing new even  after seeing the pain management Doctor who really only could only suggest invasive measures  The only thing that has helped me is a 4% lidocaine cream that is available over the counter other than that I  sometimes can get relief by rubbing a cold washrag over the most painful areas. Actually plain old acetaminophen helps minimally.  I have been trying to get a hold of a topical cannabis cream or ointment but don't know to get that as I would need a medical prescription and the docs I have seen aren't licensed to write that since  marijuana is illegal. The pain is not bad at nite as I don't move around much and do take a sleeping pain.  It has literally ruined my social life as I can barely tolerate clothing, a bra especially is definitely a torture devise.  I live alone so can go topless here!  Wish I had more ideas to offer you.  This surface pain and semsivetivity is awful,

    • ruth57682 ruth57682 mervyn3507

      I have been suffering from PHN now for about 6 months.  The severe shooting pains have gone but the skin sensitivity is still there some days worse than others.  Has anyone also had awful, almost unbearable itching to the point one doesn't know if the pain or itching is worse??  Also since the itching is relatively new, does that eventually go away along with the pain?  I was hoping someone would know if that means the nerves are somehow healing.  Another question, has anyone known if this PHN can just go away after having it 6months?  Strange thing about the itching, seems to also spread from where the original rash was   Please let me know if anyone can answer any of these questions.

    • mervyn3507 mervyn3507 ruth57682

      I have not (thankfully) had any itching during the shingles rash or afterward. The painfully sensitive skin - feels like it's burned, is enough. Unfortunately, I know that PHN can last for years, or the rest of our lives. For me, it's been 3 & 3/4 years. Sadly, we are part of a huge number of people suffering from this ailment for which there is no single or complete cure. All the more reason for us to support each other as we seek to find some relief. All the best!

    • MissUSA MissUSA ruth57682

      My pain is from a stroke two years ago. I suffered terribly with Neuropathic itch of the scalp for about 18 months after the stroke, but am happy to say that it has stopped for some reason. Shampooing seemed to give some relief during the terrible itch time, but over time it just "wore off". 

    • carol94752 carol94752 ruth57682

      I am new to "patient" and this forum.  I've read many of the posts left by sufferers of PHN, and what surprises me is that I haven't seen any (Maybe I've missed a few) mention of sufferers (like myself) taking opoids to relieve the pain.  I have had PPHN for two years now (skin, some areas more sensitive than others), and after the doctors (and I) tried everything, I was finally put on an opoid....and glad I was.  I am 79 years old, and Ii think enjoying each day, remaining active, is no small thing.  

    • MissUSA MissUSA carol94752

      Glad you can get relief from narcotics. I cannot tolerate the side effects, even at low doses. I suspect that others on this forum may have intolerance to them as well. I take nothing for the pain right now, as I would prefer to be able to think clearly and not feel drugged.  

    • carol94752 carol94752 MissUSA

      Yes, I am fortunate (if one liviing with PHN can be considered "fortunate'wink to tolerate opoids.  It has made my life pain-free (except between "feedings," when I am reminded (!) that I have PHN.

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