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When does PHN get diagnosed? Hard and fast rules?

Posted , 7 users are following.

babs99203
babs99203

Yes, I'm back with more questions, but I hope this will help others too. I was told by my doctor that I had PHN, yet I still have the skin eruptions. I won't call it a rash, one section is so minor and scattered, the other is typical shingles vessicles.  So it seems I do NOT have PHN. It was bout 12 days post initial symptoms when he gave that dx.

Most info seems to be that PHN is after the rash is "gone". Does that mean 100% clear? No signs of anything? Is it a new type of pain that develops, or still lingering pain from the previous shingles that exists after the rash is gone?

If I don't have PHN, will the Gabapentin still have a positive effect? It seems that it does definitely help decrease the pain. I'm still on the up side of increasing them, only just started 900 mgs/day yesterday.

 

1 like, 20 replies

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  • Shoe_Lady
    Shoe_Lady babs99203

    Posted

    My doc just told me the same thing! I said how can it be PHN when I have a blister on the right side of my forehead in my hairline? And how can it be PHN when it is almost unnoticeable sometimes and then becomes so painful others? Does PHN come and go? She said it can. If PHN is due to the damage done to your nerves while the virus was active, how can the damage lessen and worsen. Every time I give in to the idea that I have recurring shingles, something or someone make me think it could be something else!!! So frustrating!! Can you get blisters, fatigue, headaches, mild nausea with PHN alone??
    • babs99203
      babs99203 Shoe_Lady

      Posted

      Kind of scary isn't it that we feel some info here is more accurate than what we get from our physicians! A lot on the internet is lousy, but I've found forums like this are a wonderful adjunct to our doctor's advice and the limited "experts". NIH.Gov had some of the best info for me, and I think we'll get some good info here too.

    • dinah11590
      dinah11590 Shoe_Lady

      Posted

      I had a shingles type virus in 2014. No GP wanted to say it was shingles although I had the spots inside my left ear and felt ill for months. My neurologist said that an injection to prevent shingles type virus re occurring was not advisable as there are many different strains. Nerves can be damaged, PHN re occurs regularly with me, it is like a bad neuralgia. When I mentioned this to my dentist I found he talked with in depth knowledge of the symptoms . Talk to as many medical proffesionals as you can. Very little is confirmed with this horrible virus. I think you can have all the symptoms you describe, it depends how your GP wishes to 'label' and or diagnose it. Shingles is obliviously a hugely difficult virus for GPs  to deal with, and is regularly dismissed as of little importance. See a specialist . Ask your GP to refer you, even if he/she is reluctant to do so. 

      If this virus was simple, there would not be such an active forum as this !

      Be patient, it will improve, but it takes time. I wish you well.

    • babs99203
      babs99203 Shoe_Lady

      Posted

      As  Newby here, I must be making some mistakes. My previous comment (which I can't recall at all) is being moderated. I have no idea what I did.  I had one a few days ago that also got moderated, but that one I did include a link. Now I know better and won't do that. So Michelle, it seems I did reply to you, but I have no idea what I said.

    • dinah11590
      dinah11590 Shoe_Lady

      Posted

      Go back to your GP and ask for a referral to a neurologist . Each case for shingles and or PHN is different, but PHN is a result of having the Shingles virus . You may have both at the same time, but you need to have a further consultation with a neurologist. Your nerve may only be sensitive with PHN for a short time. Mine I know is permanently damaged. Please go back to your GP and only consider a referral, nothing else. Hope this helps.
    • Shoe_Lady
      Shoe_Lady babs99203

      Posted

      😂. That's okay, unless it was info that can cure my shingles!!

      You can't send any product names or links to products or specific dr names. However, you can send a personal message if you click on the envelope in the top right had corner of the post. So if you think of what you said to me, message me. I'm always looking for new info!

    • babs99203
      babs99203 Shoe_Lady

      Posted

      I don't think it contained any of those,  but the info regarding the topic said that some typos  can cause that too. And there have been plenty of those 

      lately.

  • ihavenonickname
    ihavenonickname babs99203

    Posted

    Hi Babs

    PHN is postherpetic neuralgia...as long as you can see the shingles, you have active shingles. When the shingles are no longer visible and you still have pain in the same nerve root that had the shingles, you have postherpetic neuralgia, PHN.

    Gabapentin-Neurotin is a medication to treat neuropathy...nerve pain...both active shingles and PHN cause nerve pain. Therefore your physician may decide to treat the nerve pain with gabapentin-Neurotin. An alternative is Lyrica-pregabalin.

    Shingles follows a nerve root. Inbetween each vertebrae of your spinal column is a left nerve root and a right nerve root...all the way down the spine. The nerve root comes directly from the spinal cord. Each nerve root innervates a specific area of the body.

    Hope this clears up the mystery

    kind regards

    • babs99203
      babs99203 ihavenonickname

      Posted

      Thanks No, I pretty well figured that our yesterday. The docs play fast and loose with that term, but at least I've gotten something to treat it. Is it OK to talk about my pain here? I was going to jokingly say "whine" but you all know about this, and it's hard to talk to family about it. Heck I'm tired of hearing MYSELF write/talk/think about it. But I again found out the hard way, the drugs only mask the pain, those danged nerves and viruses suckers are still there. I did VERY little yesterday for 15 minutes, but I needed some warner winter clothing so I moved a few things from my drawers. Well the pain kept up all afternoon, then that evening I had the audacity to spend 1 minute cleaning a sink, with a sponge AND put my own pain cream on my back. So, pain was now back up to an 8, followed by the tears and discouragement...You know the drill.

      I don't know if or when I can work. Don't know if I can hande a drive and stay at our daughter's house 120 miles away for Thanksgiving, our yearly ballroom dance event for the holidays is out, forget Christmas shopping or baking. I can't even STYLE MY HAIR!!

      Sorry guys, I know many of you have dealt with this for a long time, but I never expected this. Three weeks ago I was hiking in Zion National Park, on one of the most challenging trails, a dream I've had for years and taking my ballroom dance lessons, finally getting to a level that I could perform and compete in publicly...Pity Party over, but thanks for listening.

    • Shoe_Lady
      Shoe_Lady babs99203

      Posted

      I know how you feel....EXACTLY! I was so active and all my activities were what I loved to do. Over the last three years I had had to find new interests that do not disturb the shingles. I always am apprehensive of planning anything in fear that I will be feeling sick and in pain at that time! I am learning to enjoy, but not push myself on the good days and tolerate the bad. It is such a change in my life. I feel weak and I believe people think I'm making excuses to be lazy. I have NEVER been lazy, so why all of a sudden would I choose that way of life, if I was not hurting or in fear of hurting again. I hope we can find a way to eliminate this virus and not just managing the symptoms. Pray for that!!🙏🏼

  • Merry19451
    Merry19451 babs99203

    Posted

    Babs,

    Post Herpetic Neuralgia is the pain that lingers one month after the rash has crusted over.

    Gabapentin is used in acute episodes of Herpes Zoster-Shingles, as well.

    You are still in the acute phase of episode one.

    Merry Juliana

  • ihavenonickname
    ihavenonickname babs99203

    Posted

    I HATE SHINGLES 5 TIMES!!!!!

    So, after you heal request the shingles vaccination...in the USA it is termed, Zostavax...it is a live virus vaccination which means that some people can not have this vaccine. In the USA, you can go to just about any pharmacy, complete paperwork, and the pharmacist will administer the vaccine.

    Also the USA FDA is now considering approval of GlaxoSmithKline non live vaccine, Shingrix.

    For me this is hugh...I am on Rituximab for JRA, therefore I can not take the live vaccine...

    hugs

    • Shoe_Lady
      Shoe_Lady ihavenonickname

      Posted

      The shingrix is huge for all of us. It has a 93-95% efficacy compared the the exsisting 50 something % efficacy of the Zostavax. I'm waiting anxiously for it myself. I had heard it was suppose to be ready by now???

    • Merry19451
      Merry19451 Shoe_Lady

      Posted

      Dear Shoe Lady

      I announced that GlaxoSmithKline had applied for approval for Shingrex October 24th of 2016.

      Unless the FDA fast tracks it, it takes 6 months to 2-1/2 years for approval.

      How are you doing?

      Merry Juliana

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