Did anyone here recover permanently from their neuralgia and how long did it take?

Posted , 7 users are following.

Since I had Shingles and afterward, post herpetic neuralgia (PHN) I've been meeting up with other people who had it.  

I have understood that it can take a year to get rid of it and sometimes several months.    I unearthed some studies on the web where they listed statistics for what percentage of patients fully recover and what percentage never get over it.  

Since I started reading these forums, I notice a lot of posters who describe ongoing discomfort that they can't get rid of.   

Is there anyone here who has had PHN who is fully recovered?  

Right now, I am on a rigid diet and exercise regimen with a low dose of Amitriptyline.  

Even though my provider talks about PHN going on indefinitely, I was hoping I could get rid of it and be functional again.  

0 likes, 24 replies

Report / Delete

24 Replies

Next
  • Posted

    I got ophthalmic shingles, the worst type, in July 2013. It affected my left side: Scalp, eyebrow and upper eyelid. I got the blisters which lasted about two weeks. Unfortunately, I got left with post herpetic neuralgia or PHN: Pain numbness, itching. My left eye cornea was slightly scarred. After going through numerous antiviral Rxs and pain protocols, my condition today is much better, but I still have moderate or tolerable PHN: Slight sensation and itching (usually in the morning). My vision is great (some people wth ophthalmic shingles go blind). I do take a 25mg amitriptline pill at night, but no other Rxs.  As a precautionI have taken the new Shingrix Vaccine, which has a 90+% of preventing  shingles or the return of shingles. I am fortunate today to have a very mild case of PHN, very mild, sometimes like nonexistent, but I still have it. Everything I have read on PHN indicates the following: People who are left with PHN after initial bout with shingles have it a few weeks, or a few months, or a few years or for life. There is no cure todate for PHN that I know of. Wish you the best.
    Report / Delete Reply
    • Posted

      Thank you for your post as my ophthalmic shingles experience and PHN path has been nearly the exact same story as yours; with a diagnosis in April, 2016.  PHN is s-l-o-w-l-y getting better; hopefully there is an end in sight.  Did your physician recommend the Shingrix vaccine?
      Report / Delete Reply
  • Posted

    I am 73. When shingles hit, the severe pain lasted for almost 3 months. All pain and most scarring left after about 6 months. My shingles hit my right trunk area, front side and rear. I have been a serious runner for 50 years. When shingles hit fatigue hit also. I did get Shingrix shots and hope for no return. Permanent, who knows
    Report / Delete Reply
  • Posted

    How long

    ago did you the out break

    How severe, where.?

    those may be factors 

    I am in 2 per cent lucky me whose condition lasts indefinitely 

    i am still in agony since 2012

    it has taken a great toll on my life

    i hope yrs is better

     

    Report / Delete Reply
    • Posted

      thank you, thats very sweet and kind.

      my typing was pretty bad. i get lazy . i hope you understood it.

      i hope you have no pain asap.

      i take opoids about once a week

      i dont want to build up a tolersnce

      WHICH i have in the past. like up to 40 mg of perco at once

      also i was a top swimmer

      i cant swim in a pool the chlorine will hurt my scalp snd eyes

      i have access to medical mary, but it is so $$$$$$

      the worst part is not having any energy or good attitude to date and so now i have just given up.

      what man or woman would wsnt to hear about my 24 /7 pain. boring . they would not understa feeling

      Report / Delete Reply
  • Posted

    I think your timetable on PHN is inaccurate, both from my research and my personal experience. If one still has the pain from shingles after 2-3 months, then the diagnosis of PHN is usually given. Some people do recover "fully" but from people I've gotten to know, there may still be very minor issues if they over-do it. That nerve may always be a bit off, but it's not like it was previously. But realistically (DARN, what DID they do with their SPELLCHECK!!??) that to me is a VERY good outcome.

    I'd say a decent percent, I'll say 30-60% get some relief or quite a bit. I really don't know the actual statistic, but that's my rough guess. Some notice almost no improvement, despite various treatments. I think that some areas, such as the face area are more problematic, other areas seem to be a bit more likely to improve.

    My story? I got shingles almost exactly two years ago 10/26/16. By early December the doc said it was PHN (which is a bit earlier than some felt). At first I believed that I had almost no improvement. But after about 4 months, I realized that was a tiny bit of improvement. I couldn't measure it in days, but I could measure it in weeks or months. ie. what hurt a lot two months ago, now hurt less. I focused on that, but still wasn't sure how much better I'd get. Oh, my PHN is in my left back/chest area. By July 2017 I realized between the pain and the gab side effects I couldn't work. It was only part-time, 10 hours a week, but I was too miserable and befuddled to be effective.

    Long story shorter, about April I realized there was quite a decrease in the pain compared to a year before. I still had problems, but the pain scale numbers were lower. In June I had a whole month, almost pain free! It came back a bit since then, but is much, much better than before.

    However, I'm tapering from gab, and every two months (I drop 100 mg and found the withdrawal was too miserable after month months) I have increased pain and problems from the taper. The meds are causing me more problems than the PHN. But now that I've decreased the gab from 2700 mg in January 2017 to 700 mg in October 2018, I've gotten more of my memory and cognitive skills back. There are still problems but I wonder if once I'm off gab if the pain will be gone too.

    That was the LONG answer, sorry. That short answer is YES, one can get back to their normal life and have almost no residual PHN, but the odds are better of this if you noticed improvement in the first 3-4 months. Even any tiny improvement shows healing.

    Report / Delete Reply
  • Posted

    everyone is different.

    i had tge worst trugrminsl nervr face yoe.

    2 pet crnt of pnh never recovef.

    if you are in tbe 2 per crnt you will suffer for tbe redt of yr life

    Report / Delete Reply
  • Posted

    everyone is different.

    i had tge worst trugrminsl nervr face yoe.

    2 pet crnt of pnh never recovef.

    if you are in tbe 2 per crnt you will suffer for tbe redt of yr life

    Report / Delete Reply
  • Posted

    To Y. Suffer:

    I contacted my primary doctor who gave me a Rx for Shingrix. I got the 2 dose vaccine in June and September 2018. Cost: $0.00.

    To babs99203:

    PHN can vary from intolerable (severe) to tolerable (mild). Fortunately, I have a mild case of PHN. I got ophthalmic shingles, the worst type of shingles, in July 2013. There is no cure for PHN, although some people can have it for weeks, or for months, or for years (like me), or for life, Ps. I got the new Shingrix vaccine which has a 90+% of preventing shingles or preventing return of shingles. Wish you the best.

    Report / Delete Reply
  • Posted

    To babs9903:

    YES! My PHN was severe initially. I took antiviral medications for my eyes, pain treatments, valacyclovir, gabapentin, to a 25mg amitriptline pill I take today at night. The numbness, the pain, the itching drove me crazy, but in time these severe conditions dwindled down to a mild case. I still get some itching late at night or early morning. To alleviate this mild itching a get a wet cold water towel and slightly rub my scalp to left eye brow. Periodically, I get an acupunture treatment. I will also periodically take one 500mg valacyclovir tablet daily for a few days if need be as prescribed by my eye doctor. It is important you have a medical provider that has experience in treating shingles. In my case I have an experienced ophthalmologist. Ironically, during the day I go about my business without thinking of the shingles and I feel fine, which indicates stress can contribute to PHN. Whether the PHN will ever go away completely, only time will tell. As I previously indicated, there is no medication that I know of to cure PHN. Hope the above helps you. Wish you the best.

    Ps. Be sure and get the Shingrix vaccination in consultation with your medical provider.

    Report / Delete Reply
    • Posted

      Thanks for your response regarding Shingrix; I am starting with a new PCP and will ask about it. I, too, am still dealing with some residual itching and nerve tingling around the affected eye. Like you, I can get through most days now without symptoms, and then "BAM!", I have a day that reminds me it's still an ongoing issue. Ironically, it seems to be on Mondays after a few days away from the 9+ hour computer day! I am not taking any meds but I am still on a steroid eye drop. Thanks for your posts!

      Report / Delete Reply
  • Posted

    I went to a meeting today and also to the shopping mall with almost no discomfort from my PHN. I brought along an ice box with my ice packs inside but had almost no episodes at all. When I did, they only lasted for a minute and then subsided.

    Most of the stories here are negative and sometimes I feel ill by the time I sign out, so I thought I would offer up some hope for other people who have PHN.

    Report / Delete Reply
    • Posted

      It's another positive day and I am out and around with no ice pack and no topical meds on hand. My discomfort has been minor. I hope this means that my nerves are finally healing.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up