1. Community
  2. Brain and nerves
  3. Postherpetic Neuralgia

Periods of remission, feel hopeful, then hopes dashed

Posted , 20 users are following.

jana02303
jana02303

I am approaching the six-month mark since this all started, and am adjusting to the probability that I am going to be stuck with this for quite some time.  Mercifully, the pain has not been constant.  Hours can go by when I don't notice any pain at all. I haven't had a pain-free day since October, but there have been days in a row where it stays at a level 1-2.  Then I will have an attack out of nowhere and have intensified pain for days, with random stabs and prickles and electric shocks followed by soreness and sensitivity.  Even during these episodes, though, the pain will retreat to 0-1, and I think the episode is over, and then I get stabbed again.

I went for over a month without having any episodes of intensified pain, and was very hopeful that things were improving.  Now I think I'm just having periods of remission.  If this is going to be a lifelong condition I will learn to be grateful for the periods of remission and try to figure out what triggers the attacks.  But the ambush/retreat quality has really played with my mental state, as there have been so many times over the past 6 months when I thought I was getting better and then the beast ambushed me again without warning.  Each time it comes back I fight anxiety and tears and a general hopeless feeling.

My heart goes out to all on this board who never get any relief.  I'm not complaining about what I'm experiencing, just wondering if anyone can relate to having their hopes dashed.   

8 likes, 44 replies

44 Replies

Next
  • Geezee
    Geezee jana02303

    Posted

    Sadly this has happened to me. In January I had 1 day with pain, and I felt like after 2 years I was finally free. But slowly the pain started coming back, and since February I've been in pain almost every day. Sometime it's excruitating, bring tears to my eyes, other days it's a low level ache. 

    Pain free days are rare, and should be treasured. But you never know when they will been. I've tried to track what sets off the pain, however, the pain is on my face and head so even a gentle breeze or brushing my hair can bring intense pain. Maybe I just need a nice long holiday rolleyes 

    • jana02303
      jana02303 Geezee

      Posted

      2 years, a month of relief, and then a return?  It must have been devastating to feel the pain return after such a long break! I feel like there's definitely a mental/psychological componant to this condition.  Although I've been able to go about my normal business during the entire time and no one would realize I was experiencing pain, it is wearing me down emotionally.

      Thanks for answering.  In a strange way, it's reassuring to know others are experiencing PHN in the same way.  My rash was long gone by the time I saw the doctor, and I never did see any blisters, so my diagnosis is based on the nature of the pain and the fact that it began with a rash.  It doesn't feel as definite as I'd like, so I worry on and off that this isn't PHN but some crazy rare degenerative condition.  If PHN really can act like this, that's somewhat reassuring.  I'll take what I can get!  rolleyes

      Thanks for answering.  Best wishes to you!

    • Geezee
      Geezee jana02303

      Posted

      The bigger issue has been the medication for me. I started out on amitriptylen which was pretty effective initially, but I slowly had to start increasing the dose. The higher doses turned me into a zombie as I constantly felt groggy and lethargic. 

      My GP then put me on Gabapentin, which again was quite effective. After a few months though the pain came back and I had to keep increasing the dose. The higher doses really started messing with me. My short-term memory was affected and I would get confused a lot. I remember standing in front of a shelf of gin at the supermarket with my girlfriend and I was unable to choose one. I just became too confused. Pain wise, the gabapentin was still working but I couldn't continue my daily life being confused all the time. 

      I'm have now been on pregabalin for about 6 months. The pain relief isn't quite as good, hence the remission. A side effect of pregabalin is depression and it sometimes hits me really hard. Almost once a week I find it nearly impossible to even get out of bed some days. My GP has put me on an anti-depressant, duloxiatine, that also treats nerve pain. It helps quite a bit, but I still have good days and bad days. 

      It's tough sometimes to feel okay with having a bad day, the guilt of not working or feeling too incapable of doing the slightest task can weigh me down. Today though, so far at least, feels like a good day. 

      I have appointment to see a specialist in a few months, hopefully I can get better help then. 

  • Lojza
    Lojza jana02303

    Posted

    Hi Jana, I'm experiencing the same thing. Don't give up hope; my neighbor had it for 7 months and has now been pain free for 6 months. Hope you fully recover soon!
    • jana02303
      jana02303 Lojza

      Posted

      Thank you, Lojza.  Everything I've found on the Internet (and I think I have read the entire Internet!) makes it seem like either the pain goes away when the rash is gone or you're stuck with it for the rest of your life.  I can't find any in-between stories, and I don't know what that means.  Is it really an either-or, or are most six-month sufferers still hopeful about recovery and therefore not seeking out support forums yet?  I just don't know.  I hope your pain will ease soon.  thanks for your encouragement. 
  • anna38464
    anna38464 jana02303

    Posted

    Hi, I totally relate to what you are saying. Sometimes it is almost gone(I still am on lots of tegretol) and I feel myself saying in my mind,,"Oh my gosh, maybe it will never come back,,,and then it comes back with a vengeance. I just dont understand. Sometimes I think it is gone and I will be with people and it will begin to hurt so much. But they dont realize that anything is going on. Everyone thinks after three teeth were pulled, that all is fine. The pain has continued so badly under the gums and into the jaws. Like this sudden heavy achy feeling along with burning and pressure. 

    It does effect my mental health because I am learning that noone understands it unless they go through it. I am in support of what you are writng in case that can help,

    Anna in any way,

    • elizabeth_03822
      elizabeth_03822 anna38464

      Posted

      I so agree that its the lack of anyone understanding and even realising, that makes it so incredibly hard to bear. I feel so much for what everyone is going through. Itsxa linely isolating affliction,, 
    • jana02303
      jana02303 elizabeth_03822

      Posted

      "Feeling for what everyone is going through ... "  I think this experience is making me more sympathetic to people who suffer chronic pain, or any difficult condition, really.  "Be kind, for everyone you encounter is fighting a great battle."  I don't know who said it originally, and I'm probably misquoting it, but it's certainly true of everyone in this forum.  
    • jana02303
      jana02303 anna38464

      Posted

      Thanks, Anna.  It helps a lot for you to share your experience.  The phrase "with a vengeance" fits so well. I feel like the pain has changed in nature over the months, and it seems like the pangs are growing more intense when they return.  Or, are they the same old pangs and I've just forgotten how awful they feel and am less able to blow them off thinking surely they're on their way out?  Such a mind game. 

      I'm so sorry you are going through this, sorry that ANYONE is going through this, and hope relief will come to you!

    • elizabeth_03822
      elizabeth_03822 jana02303

      Posted

      Yes I agree as I read what people are suffering with I ferl so sad for them all. . I know when I got the shingles first, the dictor who came said " sadly its what follows!" At the time I had no idea and believed so many people who had friends etc. First it was 3 months, then 6,,,, mine never went and then they gave it the name of PHN  saying the older you are then after two years likely to have it for ever,,,for me its 6 years later at 84 years and has iincreased 😥. The one thing no one else serms to complain about on top of all the burning, stabbing, tingling etc, is the most dreadful irritation that makes me want to cut my face, eye, nose  !!!!

      i would like to know if others suffer the same.  But still the hardest is the lack of understanding around you. And the tears alone. 

    • catherine67370
      catherine67370 elizabeth_03822

      Posted

      Hi Elizabeth,

      I'm 65 and have this now for 16 months.

      IIt's the continued itch and irritation that really effects me and in the areas you mention, left eyebrow, forehead and scalp, it's unbearable and is really causing me great psychological issues as I've never, ever been sick in my life.

  • elizabeth_03822
    elizabeth_03822 jana02303

    Posted

    I feel so sad for you ,,, but having the relief times is a big plus.  I am not sure how old you are as they say the younger people can expect it to ease.. The older you get, like me at 84, makes it more difficult to shift and I now have it constant for 6years with it increasing. . Also not sure which area you suffer with it. My heart goes out to everyone I read on this site, seeing their struggle and relate very easily.  I do hope yours will ease more continuously.  So keep hoping and believing. All the best ,,, 
  • Misstickle
    Misstickle jana02303

    Posted

    I am the partner and carer to someone who has been suffering for the past 5 months from this wretched condition. He is 79 yrs old and also suffers from advanced stage COPD/ emphysema for which he is on oxygen 24x7. The slightest exertion makes him so breathless and he can barely walk a few steps. I therefore have to do everything for him. For the PHN he is currently on high doses of gabbapentin, capscein cream, and oxycodeine tablets and liquid. He's tried Anatryptine and other similar drugs but they gave him dreadful nightmares and made him act and feel like a zombie. I have spent months researching PHN, hoping to find something that will ease the total misery of the pain I witness him going through. I saw acupuncture recommended somewhere so he's giving that a try and is currently halfway through a 6 session stint. Sadly I fear this is having little effect. His life with COPD was bad enough before this PHN came along which ironically, though not life-threatening, is causing home the most distress. Unfortunately he refuses to use the internet so knows little of what I have discovered about PHN. I just haven't the heart to tell him that it seems most likely his dreadful pain is unlikely to stop, other than perhaps for the odd period of brief remission. Do you think that wrong of me not to tell him? His life is miserable enough without taking away the hope he has that it will eventually get better. I notice that none of the Doctors we see on our frequent visits to the surgery have mentioned that there is little they can do to relieve his pain and suffering. Perhaps they think it's kinder not to mention it too? He is so terribly brave and it breaks my heart to witness his suffering. It does make him 'difficult' and very short-tempered sometimes. But that is understandable. I just have to do the best I can for him. My heart goes out to all sufferers of this terrible condition - I have so much admiration for you all. For myself - I am about to pay about £200 to have the shingles vaccine. In the UK you can only have the vaccination free on the NHS if you are aged 71 or 79. I am 75, but think it's definitely worth paying for. From witnessing the catastrophic effects PHN has on a person's life, I think everyone should have this vaccine. Please join me in a prayer that the scientists will come up with a drug or cure that will stop the pain.
    • elizabeth_03822
      elizabeth_03822 Misstickle

      Posted

      Oh I am really sad for you and totally understand all you share. How incredibly hard for you.  From my experience, I would perhaps not let him know its unlikely to go away,,, and who know, perhaps he will experience a miracle. Its so hard realising gradually there is no hope and to be told that will cause him even more depression. . I also tried acupuncture and that did nothing for me,,,you don't say where on his body he suffers with it.    It must be so exhausting and emotionally draining for you.  I live with family and would love to be on my own so I didn't have to act as if I don't have anything wrong with me. Its really hard. 
    • Geezee
      Geezee Misstickle

      Posted

      There are some other drugs to try first before giving up hope. A mixture of pregabalin and duloxitene can help quite a lot and the side effects aren't as bad as the gabapentin. The doses are also a lot lower. 
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.