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I have had PHN for five months and am barely coping. What else can I do?

Posted , 18 users are following.

donald29
donald29

I have had PHN for five months.  I have stopped hoping that the pain will somehow go off and I am trying to face up to the prospect that is may be years before it does, and that I may have it for the rest of my life.  I dread the start of every day when I wake feeling comfortable in bed but after a few minutes the agonising pain starts up and I don't know whether to try to get up and about which is like having a demon with a pitchfork stabbing me and making it impossible to think.  If I get a phone call that I have to answer I can't be sure I am answering sensibly.  I take Naproxen with Omeprazole and Lyrica (pregabalen) three times a day, and Versatis (Ludocaine) patches applied either in the evening and taken off late morning, or in the morning and taken off at night.  The only things that really work, I am sure, are the Naproxen and the Ludocaine, but the best I can get from all these is a period of calm in the afternoon and early evening, and then I feel exhausted and sleepy, so the amount of the day when I am functioning properly is just two or three hours.  I work from home so I must somehow do better than this. I have been prescribed first an anti-depressant (amytriptiline) which simply knocked me out so that I slept in a drugged haze, and an anti-convulsant (Mirtazapine) which was similar in effect.  My GP says that he wouldn't want to try opiates (I agree!) and that maybe I should go to a pain clinic.  I thought this might involve having nerve-numbing injections, but apparently it is likely to be just talking about how to live with the pain.Another problem is that eating comforting warm and sweet food seems to bring a bit of relief.  My weight has gone up by 20 lbs in three months and I find that hard to control.

I feel I ought to be able to cope somehow by structuring my day but I can't make that work.  If anyone had similiar problems and has found better ways to cope than I have, please tell me!! Whatever I do leaves me too little time between agonisingpain and exhaustion and sleepiness

0 likes, 61 replies

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  • croft4Penny
    croft4Penny donald29

    Posted

    I also tried the Quetenza patch which didn't help me. It also caused discomfort for anywhere near me during tht treatment, including the doctor.
    • jim66082
      jim66082 croft4Penny

      Posted

      i found i was clawing at the walls when they put it on me.  later told me that she had put her other patients under a general in the hospital given the pain.  for me it was oral pain killers plus couldn't really get or pay for US hospital stay out of pocket for a trial like that.
  • tim70769
    tim70769 donald29

    Posted

    It's a hard road. I'm 65 and into 3 years of PHN. I tried everything there is very little medical help. I would take 350mg of Lyrca in 24hr and I was useless and still had the unspeakable pain. Then I tried all the heavy drugs ...got no relieve at all. So after laying in bed for 3  months lost 35lbs I knew if i didn't get up there was a good chance I never would. Here's what I do now, so I can get some sleep I take 75mg of Lyrca before bed with only 25 mg of trazadone and it helps get me thru the night. That's all the Meds I take for the pain. In the morning i work out for 1hour then I have renovation project that is very intense physically, I have some lunch drink three beers that take the edge off the pain then back to work. If it's not to cold out I'll ride my bike for 1 1/2 hours or stay in and believe it or not I'll bounce on a 44" trampoline for about 20 mins to a1/2 hour. My wife has terrible back pain so I have a little dog that get's my attention on the beach for aleast an hour or more. if you can maintain movement that's a distraction and your able to be as productive as you can and by 7:30pm it catches up to me. Again busy your mind pick up your iPad read watch a good movie and go to bed about 10 maybe you'll get lucky and get up very early 5 works well with me and start. Pain killer's would be great if they actually worked but this type of pain is like no other. So I wish you luck and plan ahead so when you finish one job you can fall seamlessly into the next job. It's mental toughness, that's how you'll get thru this.
  • frontdesk
    frontdesk donald29

    Posted

    I am a 77 year old male; suffering with Respiratory Difficulty and up to last year enjoyed quite a few outside pursuits, which included sailing and swimming etc.

    On June 2014, I was diagnosed with the Shingles virus, and although the rash cleared within the first two weeks, all the

    other painful symptoms of soreness, pain spasms and aching,

    I now know to be PHD, have remained.

    While my condition is not as bad as many, I mirror their frustration with their conditions, painkillers and patches, GP’s and lack of information etc.

    I am not a stranger to pain, but the sleep depravation and constant painful throbbing has brought me to my knees on quite a few occasions

    Unfortunately, I’m between the rock and the hard place! The reason I mentioned COPD is that after a severe bout of pain, my breathing became affected in that I started to hyperventilate? Which in turn, increased the pain? And so on.

    I am averse to taking subscription drugs to mask the pain, and would rather address the cause

    As an ex- professional diver, I am familiar with Hyperbaric Oxygen Therapy, and what it can do for nerve repair, and now investigating whether or not it could help in our current condition.

    I have had very little response because it has never been tried, and would have to be taken it on as an experiment without guarantees! Everything takes time because I have to follow protocol with current GP and Specialist. And it may not work anyway, should they give their permission. But it’s worth a try.

    They ran a test it the states Undersea Hyperb Med. 2012 Nov-Dec

    CONCLUSION:  HBO2 can significantly enhance therapeutic efficacy, relieve pain.

    I’m still waiting for their response to help my case here

    • tim70769
      tim70769 frontdesk

      Posted

      Having COPD and getting hit with PHN is just awful I'm sorry this happen. I take 25mg trazadone and 75mg of Lyrica about a 1/2 hour before bed and that has helped with the sleeping and pain. Be careful to much and your wasted the next day. I've tried the pain killer's and they don't stop the pain so there's no use going that direction. I found biking for a couple hours helps, it must be the mental distraction that's the only time i'm actually pain free. If it's to cold outside I bounce on a 44" trampoline for an hour again I'm pain free. Sleep is the key to any recovery.

      I'm thinking you could be on to something with the Hyperbaric Oxygen Therpy absolutely it's worth a tried. Your thinking outside the box and I'll that's how eventually this puzzle will get solved. As you said medical science isn't getting it done. Is your Doctor concern with possible complications with COPD. Who do you even approach to do this? Please keep us informed on your progress. Hope you get some sleep. Tim

  • jim66082
    jim66082 donald29

    Posted

    Hi Donald:

    All of us on this site are looking for any type of medical intervention that can help reduce the pain.  Please let us know if you do have access to this therapy and the results.  I hope it works.  

  • frontdesk
    frontdesk donald29

    Posted

    Hi,Will do. I have appointments set up. Unfortunately I cannont find any medical  research evidence in the UK. So turned to my own industry, and found an exact study from Hunan Province, China !! I am not joking. "Effect of HOB therapy on patients with Herpes Zoster " If your interested in a copy let me know
    • croft4Penny
      croft4Penny frontdesk

      Posted

      i could not find the link to the China study. Could yo please post it?
    • jim66082
      jim66082 frontdesk

      Posted

      yes please send the link.  I too have found studies in the past on nerve block chemicals that the chinese have used.  I also early on in my pain managment quent went to an ontario MD that practiced eastern and western medicine and went for about 3 months of blood letting treatments.  He thought it would help but it didn't although it did feel better immediately after but no lasting benefit.  My Canadian pain specialist loudly said in her office of staff "How can an educated man with an engineering degree and an MBA submit himself to such barbaric practices"  I guess it was to humiliate me.  I thought lady you shouldn't be practicing if you don't understand the measures people will go to if they believe they can reduce their pain.  I ended up leaving her and found another specialist.
    • jim66082
      jim66082

      Posted

      quest not quent.
  • daune91734
    daune91734 donald29

    Posted

    Donal one of the thing I noticed is that you are not takin acyclovir or gabapentin. I don't know if this will work for you but it did for me. I have a hard time keeping my weight under control as well. I know it's eas said than done but maybe walking will help. I have so much nerve damage from phn that I now go to physical therapy three times a week and find that it helps just to get out of the house. I pray every day to feel better. I do find that when it's sunny outside that sitting out for 29 minutes helps even though the weather has been awful lately. I wish you all the luck. Try to stay positive. 
    • jim66082
      jim66082 daune91734

      Posted

      was rereading and I too have had the weight gain.  i found when I lost it - helped somewhat.  my theory is that skin stretching doesn't help the surface pain.  lost and gained twice and found the lower weight helped.  not sure if that is the case.  now trying to lose again given the pain has been unrelenting the last few months again - with little break if I dont remove my upper clothing to prevent all of the irritation from the clothes
  • anna38464
    anna38464 donald29

    Posted

    Hi , Can you say more about the acyvlovir? I know I shoulld have been given that during the first 72 hours but my doctor misdiagnosed my shingles. Mu question is does acyclovir help when the post herpetic neuralgia has set in? Thanks
    • jim66082
      jim66082 anna38464

      Posted

      My understanding is that it needs to be given within that critical period or it is not effective.  Lots of misdiagnosis at that stage unfortunately.  However it is not a cure and it may help a little not at all or a lot.  So even if you didn't get it - you will not know how much it might have helped.  Keep discussing with your doctor including if the vaccine at this point could help to reduce any possible future bouts.   Amazing how difficult this chickenpox virus is and i never heard of it re -emerging before i came down with shingles.
    • anna38464
      anna38464 jim66082

      Posted

      Hi Jim. 

      I did get the live shingles vaccine after two bouts of serious shingles. The vaccine actually gave me the 3rd and worst episode of shingles. It may have been because I have a low immune system already.It is a live virus and there are conflicting views about whether you shoud get the live vaccine or not, two schools of thought. For me, it  obviously did not work  Just a bit of information from experience. That does not mean it may not work for someone else though.

    • jim66082
      jim66082 anna38464

      Posted

      thanks for the info.  Sorry to hear the outcome.   I too am thinking about the vaccine but also have immune system issues so I will discuss but likely decline.  Could not deal with another bout of shingles that is for sure.  Has so disrupted my life.
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