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mervyn3507 mervyn3507

85 Replies

  • 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


    • 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:

  • 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


  • 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.

  • ramesh1936 ramesh1936 mervyn3507

    Hi Last four years I tried many creams and nothing have worked.

    If you have any idea please write to me.


    • mervyn3507 mervyn3507 ramesh1936

      Hello Ramesh:

      Sorry I have no answers yet. Have tried many creams without success. Some people get relief from Palmitoylethanolamide (PEA) available from Holland and the U.S. Am trying with no success yet. Medical marijuana is a possibility and is available in Canada. Maybe not where you are.


    • carol94752 carol94752 ramesh1936

      Like you, Ramesh, I tried all kinds of topicals... and shots by the pain doctor... but nothing killed the pain ... until finally I was given Percoset.  I am not a drug pusher, but I do not see the value of suffering when I have a choice (until the government takes it away biggrin 

  • MissUSA MissUSA mervyn3507

    EMA401 is being developed by Novartis and their website says it is due for "filing" in 2020. 

    My pain is affected by the weather (post stroke regional pain syndrome).  Anyone else notice that?

  • raymond24308 raymond24308 mervyn3507


    I have suffered from Post Herpetic Neuralgia now for 21 months, and I have found a topical mixture that gives great relief from the intense pain.

    I have posted this recipe several times, but repeat it for new sufferers.

    My topical mixture works very well to relieve pain and reduce the need for analgesics.

    The mixture is 250grams of Invite Vitamin E Cream, two five gram tubes of Aciclovir Cold Sore Cream, and 65 grams of Dencorub Heat Gel.

    Mix thoroughly and apply sparingly to the scar area and any new troublesome areas, as required for pain relief.

    This mixture gives immediate relief from pain, and it dramatically reduces the need for pain relief drugs. Apply as often as required for pain relief. 

    Also, one Evening Primrose Oil 1000mg capsule taken daily desensitises the nervous system and reduces the pain.

    I have found this topical treatment to be very effective in reducing PHN pain,   and the need for analgesics. It is quite inexpensive, as this quantity should last two to four months, depending on application frequency.

    Best of luck in your search for relief from this debilitating complaint.

    Regards, Ray


    • raymond24308 raymond24308 paulbklyn

      I have stored this mixture for many months without adverse affects, but you could mix half the quantity at one time if you think you may not need that much.

      The Aciclovir pack recommends storing below 25 degrees centigrade, and do not refrigerate, so these are the only limitations I have encountered.

      I am sure you will get great benefit from this treatment.

      Regards, Ray.

    • mervyn3507 mervyn3507 paulbklyn

      The Primrose Oil is readily available in Canada, but the Dencorub appears to be an Australian product with a low price but very high shipping costs. Invite Vit. E cream is also an Australian brand, but there are many other brands available. The aciclovir cream is by Dr.'s  prescription.I'll try to put these all together.

    • raymond24308 raymond24308 mervyn3507


      Yes I am in Australia. No doubt similar products are available in Canada.

      Invite Vitamin E Cream contains 50mg of glycerol, per 100grams, so it does not form a skin with continual use, as other creams do.

      Dencorub Heat Gel is the strongest and cheapest pain killing Gel available in Australia. The formula is 26 percent Methyl Salicylate and 7 percent Menthol. No doubt you have a similar product in Canada.

      Aciclovir is available in Australia from discount chemists, at $7 per 5gram tube, with no prescription.

      I am sure you can find a suitable product in Canada. It is well worth the effort.

      Regards, Ray.

    • raymond24308 raymond24308 mervyn3507


      I misquoted the formula for Invite Vitamin E Cream. 

      It has 50mg of Glycerol per gram, so it is completely different to the water based Vitamin E Creams. It also has 100mg per gram of Vitamin E.

      Kind regards, Ray.

    • ruth57682 ruth57682 carol94752

      Carol, my pain also is the skin and the only thing that helps minimally is the 4% lidocaine over the counter pain and itch cream that you can get without a prescription here in the US.  Also I often will take a cool shower and then the cream.. Percoset didn't even touch it!

    • carol94752 carol94752 ruth57682

      Hi Ruth:  I am in the U.S.  Problem for me and my skin is that it covered my body!  That's why I am on Percoset, which does the trick and with minimal side effects.  Occasionally I "experiment" to see if the PHN has gone away, (in which case I would happily detox) but it's still with me!  Patches?  II need to be a walking patch.

  • carol94752 carol94752 mervyn3507

    i am new to "Patient."  therefore, did I already answer Mervyn?  Getting confused.  Sorry.

    • raymond24308 raymond24308 carol94752


      Yes, the topical mixture works just as well on the skin itch and the small

      irritating pimples that appear from nowhere. The Aciclovir Cold Sore Cream destroys the eruptions and itches in about two weeks. 

      My shingles keeps trying to return so the Aciclovir is an essential ingredient in the mixture. It is an ongoing problem, but the mixture can

      cope with it.

      Best of luck in your treatment.

      Regards, Ray.

    • ruth57682 ruth57682 carol94752

      Wow,  I have it in the areas where I had the shingles rash which is pretty much my whole right torso front and back.  I can not imagine having this all over.  Glad you can get relief from the percoset.  I didn't t know you could get that all over your bod!

    • carol94752 carol94752 ruth57682

      Yes, the 'tender" areas of skin in particular.  Even the wind blowing on my skiin was painful.  Will it ever go away?  One can only hope.  I'm glad I found this website.  Few people I know really understand siince PHN is rather exotic.  

    • paulbklyn paulbklyn carol94752

      Hi Carol

      I have PHN for almost 3  yrs, like you my skin is very sensitive,

      wind, clothes, touch.

      Tomorrow going to purchase some topical cream, using one now

      its, helps little.

      January going to my 4th pain dr for a consultation as I feel my present

      dr is not compassionate, rushes thru exam, never gave me a full exam.

      Money hungry.

      Hope you feel better


    • carol94752 carol94752 paulbklyn

      Hi Paul:  I feel for you. Trust me.  What I've found is that 99% of the doctors mean well but know nothing about PHN.  they don't know how to help.  My pain doc here tried many things, but none worked. In the end, he put me on percoset and Gabapentin (for nerve pain).  It's 2 years later, and I'm able to hold the amount I take.  I did try once to get off of the Percoset, but it became clear that the virus was still alive and "well" so there was no point to detoxing.  If I ever see an indication that the virus has "gone away," I will get off of the percoset.  In the meantime, I live a relatively pain-free life, and I think that's important.  As for side effects, I do forget a few short time things... but all in all, I'm doing very well.  Good luck to you.  Carol

    • paulbklyn paulbklyn carol94752

      Hi Carol

      Thank you for your kind words.

      My dr told me he would increase the dosage of Lyrica

      Then he told me I was at the top dosage.

      After doing about 15 mins of research  I found that

      he can increase the doage one more time.

      Now I printed out 2 websites giving the proper doesage

      of Lyrica for PHN

      They are not up on the dosages.  He is very arrogant.

      Wishing you the best


    • roberta91146 roberta91146 paulbklyn

      Hi Paul,

      I researched dosages at and under Postherpetic Neuralgia people who can tolerate "Lyrica may be treated  with up to 300 mg two times a day or 200 mg three times a day (600 mg/day).  In view of the dose-dependent adverse reactions and the higher rate of treatment discontinuation due to adverse reactions, reserve dosing above 300 mg/day for those patients who have on-going pain and are tolerating 300 mg daily."

      I am now taking 500 mg/day (100 mg in the  a.m., 100 mg in the afternoon and 300 before bed.) I moved up very slowly. I started at 50 mg., 100 next two days, 150 mg next six days, 200 mg next six days, 250 mg next four days, 275 next 12 days, 300 next 14 days, At this point I was having a dispute with the insurance people due to quantity limits of 300 mg./day and my neurologist wanted me on 500 mg/day.  It took 19 days from the time of the original Rx from the doctor until I finally received the new quantity of 150 caps for only a 30 day supply.  Hurricane Irma delayed the shipment part of this time. The next 4 days I took 350 mg/day, 400 mg the next four days,  450 mg. the next three days and finally I am taking 500 mg. day. Please note that all of these dosages were spread out throughout the day to avoid most side affects. Hope any of this helps.


  • charlie58834 charlie58834 mervyn3507

    Hi mervyn.  Sorry to hear of your difficulties, and others' problems with chronic pain also.  I have had PHN for 26 years, in the opthalmic branch of the trigeminal nerve.  this involves the right eye, forehead, and scalp.  I'm also a retired psychologist and have specialized in chronic pain for 35 years.  For the first 10 years or more I had a great deal of difficulty, but now am far more successful at managing the disorder.  I don't think the pain has decreased, but I manage it much better.  Several things helped a lot:  A modern antidepressant [not amitriptylene], such as the Wellbutrin I'm currently on.  Oddly, Aspercreme has been very helpful.  I use it at night mostly.  And, severe bouts of itching [I used to tear my scalp open with scratching during the night] have disappeared since I have been careful about staying hydrated.  Odd that water has been the main thing that helps with the pain, not drugs, for me. 


    • mervyn3507 mervyn3507 charlie58834

      Hi Charlie:

      Thanks for your comments. I can't imagine having PHN for 26 years! I know it can last a lifetime and, sadly, those of us with it are legion. I'll try Aspercreme as well as other creams that have been suggested. So far I've tried Capsaicin (various strengths), LivRelief, 15% Lidocaine,, and several mixtures from the pain clinic, with no relief from any of them. They don't seem to penetrate deeply enough. After a year of drug treatment from one pain clinic  and a Nerveblock injection - none of which helped, I was told to go home and "change my brain". My brain isn't co-operating!

      I've read books on how the brain changes and heals itself, but have been unsuccessful in attempts to harness the findings.

      I'm currently taking Naltrexone and Palmitoyletholanamide (PEA) as recommended by my current pain clinic, but have no positive results so far. Will keep trying. Thank you to all of you who are participating in this forum for your comments and support.


  • charlie58834 charlie58834 mervyn3507

    A HUGE key to success in dealing with PHN is changing the way you think about the whole thing.  Really, this does make a difference.  First, give up the idea of a "cure," or complete eradication of pain.  It's not realistic.  Instead, shoot for PAIN MANAGEMENT.  If you are looking for a cure or 90% decrease in pain, you'll reject helpful alternatives.  Instead, look for a 25-30% improvement with each method.  Then you'll find helpful things.  Aspercreme decreases my symptoms by about 30%...but that's enough to help me sleep better.  By the way, the knock-off brands of this from Target or Walgreens, etc., work just as well and cost less.  I've worked with PHN patients for years.  Almost all of them said that Aspercreme was the most helpful thing they had found.  In my experience and theirs, no doctor had ever recommended it.  This is not because they're idiots or because of some conspiracy to sell drugs.  It's because they're not trained to look for OTC alternatives.  I like the idea of not having side effects of an internal medication, and the fact that it's cheap.  Here's a fact, a different way of thinking about PHN, that might be very helpful to you:  PHN is not curable but it is manageable, and you can have a good life with PHN.  I've proven this to myself, and that's how I've lived well with it for 26 years.  Thoughts like "I can live with this...I WILL find ways to make this manageable...I WILL find a way to have a good life, even with PHN," have been extremely helpful to me, and have helped me to eradicate depression. 


    • r.oka r.oka charlie58834

      I have come to the conclusion after 5 yrs. with PHN, that healing as you say, comes from overcoming this terrible affliction with ones mind. I have tried everything from bee venom therapy to steroid injections without success. No topical has worked either. Opioids through titration have been whittled to 20mgs per day from 80mgs. One has to believe the only way to a normal life is to live with the PHN and come to embrace the battle to overcome the mental health disruption that comes with it. I have yet to regain a lifestyle that resembles what I had before 2012. You sound as though you have fought your way to normalcy after 26yrs. How long did it take before you felt as though you were winning the struggle? You are to be commended on showing those of us who are struggling, the path to recovery. Keep on that path for all of us. Thanks my friend.

    • charlie58834 charlie58834 r.oka

      Hi R.oka,

      I felt that I began winning the struggle against PHN when I got my depression under control, and when I changed my thinking from thoughts like "I can't live with this...This is horrible and awful...My life is awful" to thoughts like "I WILL find a way to have a good life even with PHN...This is not horrible and awful, but it is a great challenge...My life will be good again as I learn better ways to manage the pain." 

      Two things helped the depression:

      1. Antidepressant medication [not tricyclics, SSRI's or other more modern ones].  The best for me has been Wellbutrin.

      2. Cognitive behavior therapy, which basically involves changing your thought patterns to be 100% true and helpful to you, not allowing more negative thoughts, and working toward solutions rather than focusing on pain. 

      I decided I would search for solutions other than oral meds, and did find some that worked well.  But I also accepted that I will not get rid of the pain, I will just tone it down a bit and then learn to live well with what pain is left. 

    • r.oka r.oka charlie58834

      Thanks for your support. Mind over matter is not something I am trained for but I have a brother who served and retired from Army Special Forces. He has shown me how that is possible even when chronic pain is the issue. I hope you can provide techniques as well with your background in psychology. Your help is greatly appreciated by all who suffer. Thanks again.

    • charlie58834 charlie58834 r.oka


      Techniques you asked about:  Cognitive Behavior Therapy [CBT] is, in my opinion, the most effective and fastest way to alter one's emotions, as well as one's experience of pain.  When I began changing my thinking, not only did my mood improve, but the pain did not seem as severe.  It did not seem to interfere as much in my life.  So, you can access CBT from two sources:  A therapist who specializes in CBT, or books on CBT.  Books:

      Change Your Brain, Change Your Life, by Amen

      Mind Over Mood, 2nd Edition, by Greenberk and Padesky

      Retrain Your Bran:  CBT in 7 weeks, by Gillihan

      Cognitive Behavioural Therapy for Dummies, by Branch and Wilson

      Feeling Good, the New Mood Therapy, by Burns [good but long, one of the first books on CBT, published in the 70's].

      CBT seems complex at first, but once you kind of get the hang of it, it is easy to use.  There is more research, showing this therapy is the most effective, than any therapy I've read about in the research on psych therapies. 

    • MissUSA MissUSA charlie58834

      Yes, our mood follows our thoughts. Seems so simple, but a lot of people don't "get it". and realy get themselves in emotional stews. The 7-day mental diet by Emmett Fox won't cost you a thing. You will find it in a Google search and can read it online or print it if you prefer.   if you are trying to change your mood and outlook, you need to go on the mental diet. It was wildly embraced a couple of generations ago.  I went on it years ago and it works. It is a technique so effective that it lasts a lifetime. I think the reason it would help one feel better is because the mind becomes so active and "unleashed" after dwelling on negative thoughts. Once those are abandoned then the mind entertains other things which are positive and optimistic. Charlie has expressed great advice. The 7-day mental diet printed is just a very small booklet. You won't have to study the whys and wherefors with the 7 day diet. It gets right to how to change your thoughts.  

    • charlie58834 charlie58834 MissUSA

      A lot of people think CBT is too simple to work, that to make good change we should have to spend months or years in therapy.  They think of it as "positive thinking" and believe that somehow that would be lying to yourself.  CBT is a little more complex, but still pretty easy to learn.  It's effectiveness has been proven many times over. 

      My rules for healthy thoughts:

      1.  The thought must be 100% true.

      2. The thought must make you feel better, not worse.

      If a thought fails either rule, it must be changed to satisfy both rules.  Then, the thought must be practiced, so it becomes a habit. 


      Original thought might be "This pain has ruined my life."

      1.  100% true?  Well, maybe partially true, but for a life to be ruined you must have no enjoyment at all, ever, not even for a few seconds or minutes.  Not really true...all of us have at least moments of enjoyment.

      2. Make me feel better?  No, makes me feel much worse, drags me down in mood.

      So, it fails not one, but both rules.  Has to be changed.

      Change:  "This pain is really difficult, but I still have some times I can enjoy."

      1. 100% true?  Yes.

      2. Make me feel better?  Yes, a little better.  The pain is still difficult, but it helps me feel a little better.

      Now I know it's a healthy thought.  Now I practice the new thought, and don't allow the old thought since it's an unhealthy one. 

      So, CBT is not simple "positive thinking," but that has something to do with it. 

  • keith46188 keith46188 mervyn3507

    Hello I've had PHN for 2years and 2months now and it gives me big time pain, I've been taking lyrica 150 mg twice a day for quiet a while now and before that I was on 300mg morning and night and I found I just couldn't remember things or would be talking about something and midway through sentence my mind would go blank an couldn't remember what I was talking about. I've had lidocaine infusion x3 and never worked or lowered my pain, I've got another appointment at pain management next week an hope I can get something from them to help. But I read your paragraph and your remidy with the vitamin E cream cold sore omointment and Dincorub gel , I went an got the ingredients an mixed them up and applied it to my chest across the nipple line an a bit lower around to my back and yes it did work for me by about 30% but only with out a shirt or singlet. It's the only help that has worked except the lidocaine patches and lidocaine cream.

  • ruth57682 ruth57682 mervyn3507

     have had the nerve pain in the same area for over a year now.  I get about a 50 % relief from gabapenten 300 mg x 3(total 900 mg) a day plus 4% lidocaine cream.  No side effects. I can now tolerate a bra for part of a day which is a vast improvement.  When not wearing clothing at home, I am almost pain free.


  • susan46308 susan46308 mervyn3507

    I live in Texas and have been treated PHN for the past 18 months.  Lidocaine ointment, gabapentin, antidepressants p, nerve blocks, and codein inclusive drugs have done little to deter the severe pain.  It extends from mid-spine around my right side and under my right breast.  About one month ago I was referred to a physical therapist who has treated many pain patients.  She suggested that I might get some relief using a device similar to tens treatment, although she had never used it on a shingles patient. She has given me five treatments using a Dolphin neurostimulator. It uses an electric current to treat the painful nerve areas.  It has worked to stop the very bad pain on the main nerve going from my back to my front. I am no longer having to take the codeine for the extremely bad nerve pain.  I still have sensitivity on the surface of my skin, but I can deal with that much more easily than I can deal with the really severe main nerve pain.  The Dolphin neurostimulator treatment helps to relieve the bad pain for 3 to 4 days, at which time I take another treatment. She has trained my husband and I how to use the device and we are now treating me at home and conferring with her as needed.  It is so wonderful not to take the codeine as I certainly do not want to become addicted to it and need to drive without being under the influence.  We are curious as to what the long term effects will be using the Dolphin device, but so far it is great!!!

  • ramesh1936 ramesh1936 mervyn3507

    Where do you buy this simulator?

    How long it takes to learn the simulator?

    Do you use daily?

    • susan46308 susan46308 ramesh1936

      Look it up on the internet. It is a Dolphin neurostimulator (not simulator).  I would try to find a physical therapist who has one of the devices first before buying one.  They cost around $400 each and the treatment goes much faster if you have two and use both about 1" to 2" apart at the same time. I need to do a treatment every 3 to 4 days, but you can use it as needed.  They have training sessions for physical therapists in the U.S.  It took about two or three sessions with the therapist helping my husband and I learning how to correctly hold it, how much pressure to use, etc.  You can feel the small electric current in the nerve when it is being used correctly. It is generally not painful; however, in the area of the nerve which is most aggravated or sore, it can be slightly painful. Although you do not need a doctor to buy it for you, I would not attempt to use it without a therapist's assistance to make certain I am doing it correctly.

  • babs99203 babs99203 mervyn3507

    I'm usually VERY conservative when it comes to meds and treatment as I've worked in healthcare for 30 years as a medical secretary.  This has me intrigued however. I just read an article on NPR's website (National Public Radio) about a researcher who found that Resveratrol (the chemical found in red wine, so you may have heard of it) may help break up the nerve signals. He was wondering why sometimes after an injury, there is still pain. He found that a cream with a high percentage of resveratrol can help with pain. He couldn't get the money for a clinical trial so he started selling it himself! I actually found it on Amazon, it's $19.00 for a 3 oz tube. I have never tried it, but the science behind it seems sound.

    • babs99203 babs99203

      Here’s an update.  Unfortunately, I wasn’t the only one who read that report. The sold out and the product is on back order. After the night I had last night, I tried to  order some and found that out. 

    • babs99203 babs99203 ramesh1936

      I can't believe I wrote that whole post and forgot to give the name. Blame it on the 1600 mg of Gab. It's Ted's Pain Cream, named for Dr. Ted Price, the medical researcher. Here's a bit from his website: "Try the first product on the market that doesn’t just numb pain, it outsmarts it on a molecular level. Two natural ingredients in Ted’s™ (methyl salicylate from the wintergreen plant, and resveratrol from grape leaves or Japanese knotweed) appear to work together to target pain in a brand new, previously unknown way. Unlike other topical treatments, Ted’s™ doesn’t numb your nerves, nor does it simply distract you with menthol or heat. It actually resets your nerves to their pre-injury state, eliminating false pain, while allowing important, true pain signals to still make it through."  The article and website are both very interesting. A friend bought some the same day I read about it. Unfortunately, I waited and now it's on back order. But I did do a pre-order on it. I had a bad night recently, despite generally improving, so I figured it's worth trying.

      Rather than Amazon, which will only tell you it's not currently available, go to his website. If you want to risk paying in advance for it, you can do that and it will come in about 12 weeks.

  • louie 70722 louie 70722 mervyn3507

    17 years ago, I had a browlift. My scalp nerves were damaged, and I had a high level

    of itching, burning pain that never ceased. I went to several pain clinics, and was given narcotics which did nothing. Two years passed with this awful pain, and I met a physician who told me of the difference in neuropathic pain, also called nerve pain and the more common nociceptive pain, which responds to narcotics. Lyrica, neurontin were designed for this neuropathic pain, but had no effect on me. He prescribed oral sinquan with oral tablets of clonazepam. Within 45 minutes of taking the two medicines I was 100% pain free. I learned later on that it was primarily the clonazepam that was doing the job. I stopped the sinquan and am now on 3 mg of clonazepam at bedtime, to this day. I am still pain free. The dosage of the drug was of utmost importance, usually clonazepam is thought of as a tranquilizer, and seldom prescribed above 1 to to 1.5mg per day. If you look in the PDR, or Drug Facts and Comparisons, it has a much higher dosage when  prescribed for its anti seizure properties. Each of us is different, so the dosage should be titrated by a pain manager. I find very few physicians are familiar with this use for the drug. Most default to their knowledge of the drug as a tranquilizer, and wont consider the higher dosages required for nerve pain. I find psychiatrists are quite  knowledgable concerning the benzodiazepines, of which clonazepam (Klonopin) is a member.

    In closing, remember this wont work for everyone, and as the drug is a tranquilizer, make sure a physician is involved in determining the dosage. Neurologists, who work with seizures, and psychiatrists will be your best bet on being knowledgeable on this drug's "secondary use."

    Good Luck to all


    • babs99203 babs99203 louie 70722

      That's a very interesting explanation of nerve pain and of a drug I'm not familiar with, (with which I'm not familiar, there. My inner-grammarian is now happy). I've got an update on my Ted's Pain Cream. I've been using it 3 times a day for the last 5 days and I believe it's helping. My friend didn't like it (but her pain is NOT from nerve pain) so she gave it to me. I've waited to report anything, but here it is.

      I'm very cautious in saying this, as PHN can increase and decrease for all kinds of reasons. However, certain movements that would consistently cause greater pain, like bending to tie my shoes or reaching for something on a shelf are much more muted. I haven't had that super sharp lancinating pain either. They don't specifically suggest it for PHN, but from what I've read, it's logical it could help. I stopped my Aspercreme 4% Lidocaine and use this instead. I'm still on my prescription NSAID, Extra-strength Tylenol 3X a day and my 1500 mg of Gab (500 3X a day).  They feel that it could take a week to see any improvement so of course I'm hopeful that I'll see continued relief, but I'm not looking for a cure.

      They also told me that back-log time has been greatly shortened to about 6 weeks. So, it's up to you. The mint smell is quite strong, like Ben Gay, but I don't mind it. There's also some burning feeling, again as in Ben Gay, but it's tolerable and lasts about 5-15 minutes.

    • babs99203 babs99203

      Hmm, I thought I had updated this. Unfortunately, on my 8th day, I had to stop using the cream and go back to my Aspercreme, as the Ted's wasn't helping. It was very disappointing, for many reasons. I've been in touch with the company and they were sorry it didn't work, but said they're trying to create a new which may be more effective. I'm also dealing with a lot of other things now--my hubby's having a knee replacement tomorrow, so as others have mentioned the stress is probably making my symptoms worse. But even so, I don't think it was right for me as once I got back to the Aspercreme, the pain did decrease.

  • ron96331 ron96331 mervyn3507

    Hi Mervyn

    I had this treatment called Pulsed Radio Frequency. The idea is similar to nerve ablation but less invasive. I had that on July 25 and the pain was gone for 3 months, now it's coming back and it seems like at a lesser intensity. I have PHN in the right occipital nerve, means headaches all the time. It's worked let's say 70%

  • sue2910 sue2910 mervyn3507

    I've been taking Lyrica (50 mg) for about a year, and it's helped with the pain. Lately, some buzzing/tingling in the arm has appeared (the side where I had shingles), but the Lyrica has helped calm the pain enough that I can keep working. Someone later in this thread asked about itching? The itching never seems to go away, and it gets worse with stress. i KNOW that stress is my trigger for worse pain. But Lyrica and an occasional Advil (ibuprofen) keeps me going for the most part. And sleep!

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