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A few new studies

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nick37442
nick37442

Afternoon everyone, I'm a 36 year old male who had shingles over 13 years ago and have had chronic PHN ever since. I've tried/tested just about everything out there for the pain management. I've found (my wife found) a research Doctor that has been studying the VSV virus at length and has some new things on the horizon.

Currently I've been on massive doses of anitvirals as genetic testing shows that my immune system responds differently than it should to the shingles virus. There's a few things that could be happening, I have chronic shingles that isn't breaking through the skin and the nerves are never able to heal, my immune response is about 100 times what it should be when the virus is active causing painful inflammation, and another option is, the virus has actually changed the nerve receptors. The last one is the latest they've come across...in my understanding (I'm at a toddler level of medical knowledge), there are two types of receptors in nerves, ones for pain and the other for when the nerve/muscle stretches, they're thinking that the stretch response some how changes and now causes pain.

Just wanted to let you all know that there are some great doctors out there working on this! I've been a guinie pig for a while now but it's nice when there is actually some form of positive outlook :D Always happy to communicate with anyone about my experiences as well.

cheers,

Nick

1 like, 12 replies

12 Replies

  • kimberly36176
    kimberly36176 nick37442

    Posted

    Thank you very much. I try to learn as much as I can and I'm actually in the medical field. I am 37, 38 as of tomorrow..i got shingles little over 2 years ago and have suffered extreme PHN. It is located on left side of bra line which makes difficult to manage because of needing to wear a bra. I have tried everything out there and a year and a half ago.i did have a spinal.cord stimulator implanted. Did well for past year until 3 months ago and felt.like I had shingles again. Did 2 nerve blocks again with neither working so 3 weeks ago.i had radiofrequency nerve ablation. It is definitely not for the faint of heart. Brutally painful but it seems to actually be working. He said I might get a year out of it. Dreading having to do it again but any new things I can learn about I'm willing. My fear is shingles reaccuring over and over but so far it hasn't happened. Thank you for sharing...

    • nick37442
      nick37442 kimberly36176

      Posted

      Thanks for your note Kimberly and sorry you have this too! My only current releif is non stop capcacin topical and every other month I have an 8% qutenza patch placed on the area. I have the issue in the same location and have learned there might be an increased risk of heart attacks as well. 

      It really was an "ah ha" moment the first time I met with the research Dr., my severe issue with mono as a child and even some stomach issues could be tied to how my immune system handles the virus. I'll keep posting as new treatments are applied.

  • paula20695
    paula20695 nick37442

    Posted

    Hello Nick.  It is nice to know there is research for some that experience shingles and our immune system responds a bit "differently".  May I ask; as You mentioned regarding Dr.'s,where is it that You have been seeing Doctors and having some of Your tests and answers done?  Anything on the horizon sounds so very promising.  Thank You for Sharing.  Sincerely!!  Paula.....Communication, I feel is Key!!

    • nick37442
      nick37442 paula20695

      Posted

      Hi Paula, my doctor is a researcher out of Colorado. She's been working with NASA and quite a few other virologists around the globe. I just moved to Australia so I've been working with her remotely. There might be some immunotherapy options coming soon too. There are so many factors to this virus that are being looked at from diet to solar flares...the problem is, there just aren't enough doctors looking into it, or there's not enough money to be made rolleyes

       

  • michael5678
    michael5678 nick37442

    Posted

    Hey Nick,

    Let me start out by telling you, I have MS. You mentioned your immune system. That is why I think I got the shingles. A Lowered immune system, caused by stress and MS and certain medication that lowered it more.

    I got the shingles when I turned fifty. I was under stress, but not that much. I know that now at fifty four, I am still in  pain. Although I have gotten use to it, but the pain seems to be a direct link to my MS flaring up to where I lose mobility in my legs. Anyway I thought you I would touch base with you to  let you know there is someone out there that has a chornic as well as progressive disease. 

  • susan74911
    susan74911 nick37442

    Posted

    Hi Nick,

    I'm a 60 year old and I have had PHN for 6 years now. It is centred on my right eye and the nerves in the right side of my face.

    I'm also having Qutenza patches, but only every 3 months. The relief only lasts for about 6 weeks, and is not anything like total relief while it lasts. I use Pregabalin (Lyrica) to help with managing the pain, but the side effects are hard to live with.

    I also have prolonged chest pain following a heart procedure that went wrong, and the pain specialist for that was describing how that pain has somehow changed and become like the PHN response. Sounds similar to what you're descrbing? I had no success with nerve blocks. They have now given me a TENS machine for my chest pain, and have advised I try relaxation techniques. Already I have an allergic reaction to the electrodes for the TENS, so I'm not very hopeful. The pain clinic for my chest is now working with the pain clinic for my PHN to see if they can find something that will help both.

    I've had to give up work because of a number of health issues and I don't seem to have found my place in the world yet, but it's early days. I'll let you know if I find anything useful!

    Hope you're having a good time in Australia. I'm in the UK, where we have just had 3 hot days and then a day of thunderstorms: that's summer over then!

    Good luck!

    • nick37442
      nick37442 susan74911

      Posted

      Sorry to hear sad Do you use the quetenza on your face?!?! I don't know how you do it! I do it on my back and it's almost unbearable rolleyes 

      There's an app called Headspace that has a good pain managment "mindfulness" regemine, might be worth trying :D

      Nick

    • susan74911
      susan74911 nick37442

      Posted

      The Qutenza on my face is very hard to bear! They make sure they protect my eye, which is where the worst of the pain is situated, and then cut the patch to cover as much of the nerve paths on the right side of my face and head as they can,  and leave it for about 50 minutes. I then apply ice packs as soon as they take the patches off. I also use aloe-vera to cool it down. During the treatment I listen to an audiobook to try to distract myself from the burning! Last time my nose blistered, so this time they will take that patch off first. It's off-licence, but there is nothing else that works for me. I have to go to a specialist pain clinic for the treatment because of the risk to my sight.

      I'll try the app; thanks for the suggestion.

      My next treatment is on Thursday, so I'll report back.

      Best of luck to you.

  • erin72929
    erin72929 nick37442

    Posted

    I'm sorry this happened to you, but I'm glad to find a person I think is like me.  I have not had the benefit of any special testing, but my presentation baffled doctors enough that I think it is likely I too respond differently.  I got shingles in my mouth August 2015.  I immediately had 11/10 pain on left side of face/skull/scalp.  It just never went away.  I had recurrences, sometimes the size of a pin head, in my mouth, gums, tongue.  I begged to go an an anti-viral, but my gp said no.  She was of the traditional view that once the lesion is gone, so is the virus and my nerves are just damaged.  However, my pain specialist listened to me plead my case.  I started the antivirals and my pain cut in half.  Then I added magnesium and Vit D as another pain specialist had anecdotal evidence they diminished pain.  That halved the pain again.  I just ran out of anti-viral on Saturday (was feeling so good, I forgot to order the refill!).  I'll go order it now on my way to work.  I'm heading back this aft after 18 months on LTD.  I really hope those doctors continue their work on this problem that affects so, so many people.  Cheers!  To a healthy future.  

  • frankjs
    frankjs nick37442

    Posted

    Can you tell us what the antiviral medication is. I am 18 months into PHN and nothing works;tried all the pain killers, acupuncture, and other therapies. I have to say that the antiviral approach sounds the most logical of all others.
    • nick37442
      nick37442 frankjs

      Posted

      So basically the same anti virals I was on when I first had my outbreak is basically continued on for months at a time. My doctor is trying to get the virus out of my system...
    • erin72929
      erin72929 frankjs

      Posted

      I take 1000 mg of valcyclovir daily.  I have been taking it since mid-February last year.  
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