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

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

61 Replies

Next
  • steve_1
    steve_1 donald29

    Posted

    I think we all started with good intensions but when it feels like someone is ripping your arm off and you wish he'd hurry up so you can die good intensions go out the window.

    I was advised to take an opioid and an antidepressant to comtrol the pain by my GP and thank god I listened..

    I can take 10mg Amitrityline (good for nerve pain) and 1 or 2, 50mg caps of Tramadol, up to 400mg per day.  what I actualy take is the Amitriptyline at night and one or two (usually 2) Tramadol over the course of the evening.

  • steve_1
    steve_1 donald29

    Posted

    Don't know what happened there, it all went blank and did it's own thing.

    Anyway, as I was saying. I started with  taking one or two at the onset of pain but gradually whittled it down till I found a level I could cope with. I've been on this regime for a few years now and every so often I stop taking them to prove that I can.  It's only the pain that makes me return to them.

    These things are only addictive if they are misused.

    You may find Naproxen or some other form of ibuprofen will work for you, but for me they were next to useless.

    Good luck with that.  

  • croft4Penny
    croft4Penny donald29

    Posted

    I can only sympathize with all of you. You've done what you can do and I guess what works best for one might not be best for another. I find the Lidocaine patches are useful, but only in so far as making wearing clothing a bit more bearable. I much prefer the Lidocaine cream and, as I've said before in this forum, I use a 4% cream. It is an expensive medication, and not covered by any insurance. I've tried other lidocaine ointments, which are covered in the U.S., but they don't work. I also take 600mg gabapentin every 3 hours and amytripalene at bedtime. In addition, Iat bedtime I take 1.5mg lorazepam and 10mg zopidem, so I'm pretty well knocked out to sleep. I know that's a lot of drugs, but that's what I need.

    Emis Moderator comment: I have removed the link/product name as it was to a site unsuitable for inclusion in the forums and we do not allow repeated postings of brand names. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • jim66082
    jim66082 donald29

    Posted

    Hi Donald:

    Sorry to hear about your pain for PHN.  You are not alone.  THe good news is that everyone is different and you are still at the early stages at 5 months and the pain may diminish or disappear.  I tried all the "brain drugs" that have side effects which include pain reduction (i also had amiltriptyline oral and topical - didn't help but lots of side effects for the oral including drowsiness).  Yes you should go to a pain clinic given there a range of treatments they can try and everyone is different.  On this site you will find people that understand how difficult it is to deal/cope with this pain.  Most people dont understand given one "looks ok" except when one shows the characteristic facial signs of pain and also has the psychological impacts of trying to cope with prolonged pain.  for me there are only two things that help - the narcotics for the deep pain (does not do a lot for the surface pain) and creams/lubricants on the skin along with a soft somewhat snug but not tight and NEVER LOOSE cotton undershirt.  Once the surface pain starts from either friction or on its own there is nothing that stops it outside of taking off the clothing and lying down and keeping the pain area free from anything touching the area.  Haven't found anything else.  Oh yes for some reason jacuzzi jets of water help (however a shower is painful - so has to be the right pressure/pulse of water).   take care and feel free to ask anything on this site.

    • donald29
      donald29 jim66082

      Posted

      Jim, I don't think I have said directly to you how helpful your reply was to me.  A sensible, kind and compassionate voice of experience. God bless you.
  • donald29
    donald29

    Posted

    Thanks Steve for your suggestion about opiates.  I had rather written them off on the baisi of a GP's passing comment about not wanting to put me on them.

    And Thanks Jim for what you say about a pain clinic.  I'd rather written off the idea, just through not knowing enough about what they do.  It's so good to hear from people who write from their own experience.  Seeing a GP consulting his/her book of available medications and clearly relying on that rather than real-life info is not reassuring!  Thank you everyone for helping.

  • anna38464
    anna38464 donald29

    Posted

    Have you tried ice packs? Sometimes that helps. It is a matter of acceptance over time but you still have a good chance of yours going away. I was told that if you have it over 2 years sometimes it may stay for a long rime but many people have it go away before then. Unfortunately I am one of those who have had it for 5 years. yeah, it is worse for me when I get up and when I am not distracted. Often evenings are bad. Yes and the fatigue can be tough. I mentioned before, the scrambler therapy. I am going back for a booster treatment because it really helped and there is no pain at all. Meditation, and silk or cool cloths help a bit also
    • donald29
      donald29 anna38464

      Posted

      Thanks, Anna. The surface pain is bad and I hadn't thought of trying silk next to the skin. I don't think I could do meditation, but i can daydream quite well!  
    • noddy_9
      noddy_9 anna38464

      Posted

      Yes I was using gel packs, u put in freezer. I also have a Tens machine, which got from Pain Clinic.As my problem is in my head I always make sure I wear a hat and ear muffs. Even in summer if windy.What is Scrambler Therapy?
  • noddy_9
    noddy_9 donald29

    Posted

    Hi Donald. I have had problems with this for 17 yrs I am afraid. In my head too. All these painkillers didnt work for me. Also various anti depressants and gabapentin. All with terrible side effects. It has caused a problem with my sleep. I now have chronic fatigue. Lately though I got a pain patch, new one, applied at hospital. It stays on for an hour and supposed to last 3 months. I am again on amytriptilene 12.5 mg. Cant go any higher. Had to go back on something due to the rippling,crawley feelings over head and face. So things are a little better but it has certainly affected my life. I was only 47 when this happened to me. New shingles vaccine cant get until much older, which is shocking. My doctor never gave me the anti viral drug so thats why I am suffering. Good luck.
    • donald29
      donald29 noddy_9

      Posted

      Thank you, Noddy.  I didn't know (and no GP told me) that there is such a thing as a pain patch which lasts, or is supposed to last, for three months and that for you things are a little bit better.  I am going to follow this up. The lidocaine patches I use now are the best thing I use so it may be that patches 'suit me'.  

      I understand very well how you feel about the doctor never giving you the anti viral drug.  I first saw a GP when I had severe pain and what I now know was an over-the-whole-body burning sensation that passed and left pain in one place which is a definite signal that shingles is about to erupt.  Unfortunately the GP only 'examined' me with a vest on and said it was 'muscular' and that physio would help.  I saw a physio next day and she instantly said I had shingles and I should get the anti viral drug immediatel.  I did, but it was too late - it has to be given immediately. That useless GP was 'disciplined' I heard later, but that is no consolation.

      Dealing with GPs who vary a lot in their competence and compassion and ability to listen is a skill that can be developed I believe,  I suggest: be sure to play the part of the patient who has done his own research, but is very keen to know what the doctor says.  Try treating him as an equal and get him/her to discuss alternatives. Act being brave about it all and limit the complaining!  A world-weary GP faced with what he sees as yet another wearisome whinger will just get you out of the surgery as soon as he can with a quick prescription.  I'm not saying you aren't the ideal patient!  I'm just saying how I try to get the best out of a GP, and I only wish I could do it better.

      .   

    • anna38464
      anna38464 noddy_9

      Posted

      Hi , I just wanted to share my own experience with the vaccine. I also was misdiagnosed by my PCP and missed the period to receive the anti-virals(I look back on that day a lot and have a lot of feelings about that doctor !!). I waited a week and a half and the virus spread from my neck, to my ear and my entire side of my scalp. By the time I finally went to the ER the doctor said it was the worst case of shingles he had ever seen. I then got shingles in my eye, several months later and there was a debate about whether I should get the vaccine. One doctor said "no" because my immune system was so compromised by the neuralgia and it is a live vaccine. Another doctor said to get the vaccine but to make sure I had no infections(often my lesions became infected from itching and burning). Well, I went to get a culture of my scalp . Because they did not call me back the other doctor thought the coast was clear and gave me the live shingles vaccine. 

      A week later I got a call fro m the doctor who did the culture and said she FORGOT to call me and I had a staph infection. Well, it was too late , I already was given the vaccine and I got super sick with shingles again(the worst I had ). Besides the rash , now on my arm, I had many other serious symptoms. I needed VNA services at home for a long time. I am just mentioning it because it may be worthwhile to research if you should get the live vaccine when your system is already compromised. I think there are different schools of thought on getting the vaccine if you have PHN . My experience was super bad.

      Also I  initially got the shingles in an area in my body where I had been injured . Anotherwords the shingles went to the weak area of my body where the injury was and followed the nerve path of that injury. Has that happened to anybody else?

    • jim66082
      jim66082 anna38464

      Posted

      Anna:

      I am really sorry to hear about your siutation.  I know how I suffer and cannot imagine how you cope.  We on this forum are probably the few that truly understand.  I know that doesn't provide relief but your not alone.  I really dont know what else to say given i know what your days are like.   jim 

    • noddy_9
      noddy_9 anna38464

      Posted

      Thats pretty horrendous. I didnt get spots. You dont always get them I am led to believe. It was a yr later I had changed doctors and asked to be referred to infectious diseases dept at hosp. I had gone to a chiropractor because of the pain in neck and back too. But he thought I had chronic fatigue/ME. Then i went to a meeting to which he also came. You have to get the anti virals right away. Dont think il bother with the live vaccine after what you have said. My sleep has caused me a problem over the years due to this. I have been left with sensations all over head which are not pleasant. I am again on amytriptilene 12.5mg as I cant take any more. I do get so overtired but this is helping a bit better at moment. I also use axain (chilli pepper) cream but as I said already I get patches applied using hot chilli pepper. Lidnocaine patches I dont think do anything.. Some of my hair has to be shaved. It is just above my left ear and radiates over head. Been on so many meds the docs just dont know what to do with me. Mine has been a long struggle too. If u dont get ur sleep u never seem to feel any better. All those natural sleep aids are hopeless. Tried them all. Hope some of my info helps.
    • noddy_9
      noddy_9 donald29

      Posted

      The patch is new at least in Edinburgh, stronger than chilli pepper cream which I was applying before. Docs here dont really want to listen to anything you trying eg herbal etc nor about any research you may be looking at. Youve got to do it all yourself. They just cant believe and think you exaggerating what you are experiencing. If you go in dressed nice and maybe a little makeup they think it cant be that bad and if you go in not really bothering and in tears with the pain you are classed as depressed. You cant win. The Shingles Society in London have been very helpful.
    • jim66082
      jim66082 noddy_9

      Posted

      i also tried the qutenza patch.  the pain of pain the skin for 2 hours was unbelievalbe.  left red welts and unfortunately provided a couple days of relief and i paid over 1000 for the treatment in the usa (isn't available in canada)  will look up shingles society of london.  thx
    • anna38464
      anna38464 noddy_9

      Posted

      I have it on my head also,  just left side. It is a real problem with the hair..It irritates the pain..I used chili pepper cream too but did not work really burned on my lesions. I do stil find ice helps and wear goves to avoid infection at flare up times..I tried all medicines..all of them, weather change effects it..Have any of you tried medical marijuana?
    • jim66082
      jim66082 anna38464

      Posted

      i take cesamet which is a pharmaceutical version of marijuana but doesnt have the full range of effects - it does help.  Interestingly I have asked my pain specialist about trying medical marijuana plus his take on 3 other options:  1. med marijuana, 2. prednisone(i found it helped with the pain when i had to take it for other reasons but huge side effects on this drug)  3. ketamin brain infusion/induced coma 4. radiation treatment to destroy the nerves in the upper dermal area.   Will let people know what i hear back.  jim
    • noddy_9
      noddy_9 anna38464

      Posted

      Of course I didnt have lesions. The old lady in her eighties mentioned this but I was rather scared to try.
    • noddy_9
      noddy_9

      Posted

      The Guardian had an article about meds yesterday, like amytriptilene and others now discovered causes alzheimers. Not good this but what do you do
    • donald29
      donald29 noddy_9

      Posted

      Thanks, Noddy! Lidocaine is far far stronger and more effective than capsaicin.  I'd say use three patches (the maximum) and time it so that you get the benfit of a full twelve hours application.

       I don't think I'll try make-up, even just a little, because my daughters would have fits.  I find presenting yourself as in dire agony but being brave about it gets the best results from a GP.  Being in dire agony is the simplest part of that act, but being brave seems to get them on your side enough to rummage through their pharmaceutical book to find something else to try.  You never knoiw, it may help.

      Thanks for recommending  the Shingles Society.  And thanks to help from all the good and helpful people here, I shall be going to a pain clinic as soon as I can get the GP to make me an appointment,  

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.