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Post herpetic Neuralgia HELP!!

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barbara30771
barbara30771

i had shingles in October 2013 followed by what was assumed to be post herpetic neuralgia. I have tried all the various medication prescribed but appear to be allergic or react to all of them and none take you pain away.

i dont know what to do next, seem to go from pillar to post. 

I had an xray done about a year ago as, (because I was involved in a car accident 3 months prior to the attack of shingles) it was thought the pain could be due to something else. It wasn't but the radiologist said that if I had a certain nerve 'snipped' in my back (left hand side) all should be well. Has anyone else heard of this. My doctor said they didn't have anything in writing from the radiologist to confirm this. I really feel as if nobody is much bothered about this sort of pain.

I do know for a fact that having nerve ends burnt off can stop pain. I had this done (privately when I was covered through work) in my neck which stopped the migraines I had suffered badly with for years. I no longer have private medical cover unfortunately. 

I can can only sympathise with others who have suffered following shingles. The pain is HORRIFIC but the advice seems to be to take pill after pill and then If that doesn't dork have another ruddy pill.

2 likes, 56 replies

56 Replies

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  • Merry19451
    Merry19451 barbara30771

    Posted

    Barbara,

    Thank you for your kind words. It is difficult when our close family members are agonizing and waiting for doctor's appointments to arrive, the results of imaging studies, and biopsy reports. One aspect of mature women is knowing how to be supportive and being there for one another.

    Merry Juliana

    • Merry19451
      Merry19451

      Posted

      Regarding the Zostavax or Shingles vaccination, it did not change the rate of recurrence of my shingles. Perhaps it does in others, but the intense of pain, duration of Shingles, and frequentcy of recurrence remains the same.

      I wouldn't count on it to help.

    • barbara30771
      barbara30771 Merry19451

      Posted

      Hi Merry

      Thanks for that information. You may have saved me another 200 pounds that I don't really have! Thanka again.

      Barbara

    • alexis99772
      alexis99772 barbara30771

      Posted

      My sister in law's mum from Argentina is checking out alternative medication for me, will keep the site informed.

      i am having up to ten minutes relief tonight. Lying flat without movement.

      back to Dr tomorrow.

      regards

      Akexis

  • alexis99772
    alexis99772 barbara30771

    Posted

    Hi All

    i am now in my ninth week of very painful PHN. It's driving me crazy. Been out 6 times, not able to drive and really fed up. Taking 1,200 mg gabapentin and 20mg amitriptyline per day. Cannot stand anything  on the tummy. Walk around pulling my loose top from my torso.  Can anyone suggest anything please? 

  • alexis99772
    alexis99772 barbara30771

    Posted

    Hi 

    from taking shingles 1st April 2015, I developed PHN. Now on gabapentin, lidocaine patches - 5%, pain management and acupuncture. The pain on left hand side of my torso is really bringing me down. I am driving a little more than before - but it is painful when I go over a bump. I am still off work. 

    Does anyone have any further suggestions please? I also do relaxation for 15 mins per day with intention to increase. 

  • mark59490
    mark59490 barbara30771

    Posted

    Having had shingles about 3 years ago I have just developed what must be PHN and it is very painful. However I have been taking a combination of pain killers for another condition consisting of a dosage of 2 x 15/500mg of Co-codamol plus 2x Codeine Phosphate 15mg. According to my GP this is a safe dose that can be taken not more than 4 times every 24 hours. If you try it let me know the results.

    Mark

    • Merry19451
      Merry19451 mark59490

      Posted

      Hi Mark,

      Usually, you don't "just develop" post herpetic neuralgia 3 years after you have shingles. PHN is a continuation of the shingles pain. If the pain is in the same area as the last episode, it is more likely you are suffering from a second occurence of the Herpes Zoster virus, especially if you had/have some of the other symptoms of fatigue, malaise, muscle and joint aches and pains, headache, low grade fever. It is also possible to have "Zoster sine herpete" or Shingles without the rash.

      My suggestion is to go to the physician's office for antivirals ASAP ie TODAY if you feel the pain is in the same location and is the same as the prior shingles rash. Usually, the pain precedes the rash, anyway.

      I hope this helps.

      I am truly sorry for your suffering.

      One can take Codeine 64mg po every 6 hours per 24 hour cycle. The amount of acetominophin is based on the liver function and 1500 mg per 24 hours is considered reasonable if you have no liver disease.

      Merry Juliana

  • mmsmith
    mmsmith barbara30771

    Posted

    I've had several weeks of PHN. I tried just about every topical out there for the burning, itching and internal shooting nerve pain. BioFreeze worked - numbed me out for 30 minutes or so and I could fall asleep. Acupuncture helped immensly. I am finally better. Good luck.
  • Hellokitty11
    Hellokitty11 barbara30771

    Posted

    Hello Barbara, I have just joined this support site as I read your post and am wondering how you are going with the PHN? I hope you have had some relief.

    When I read you had shingles in Oct 2013 it was like I had written the post myself.

    My first experience with shingles lasted for about 10 weeks. As you & others have described, the pain was absolutely debilitating. Especially in the first two days. The muscles under the rash kept spasmimg & I could not move without causing extreme pain. The first attack was on my left side erupting from the middle of my spine & extending around in a wide band nearly to the middle of my stomach. Because the initial symptoms started on a back lower rib I thought it was costochondritis which gave me hell for about 4 months in 2012. A couple of months later I had a second attack that started on my right side of my back, level with my 2 nd lower rib. Without any exageration I suffered this outbreak for over 5 months of pure hell. Since then I have horrible PHN with occasional 'flares' of shingles that last 2 to 3 weeks at a time. My immune system is corrupt as I have several autoimmune diseases & am on 10 mgs of prednisone. Also I did not receive the antiviral in the first 72 hours because I was misdiagnosed by 2 Dr's.

    At times when the PHN is severely affecting me I really struggle to keep fighting. Reading your post has helped me not feel so alone. For that I am very greatful to you & the other members who replied to you. I live in Australia in a country area of Queensland. My 3 children are all leading busy independent lives. They have no comprehension of what I deal with on a daily basis. It does hurt me that they think I have just gotten lazy because I am not able to keep my place all mowed, trimmed & tidy like I used to. In fact I don't really give a F what people think, Lol. The next time someone tells me that I could control the pain with my head if I just had a more positive attitude about it, I am going tip boiling hot water across their back & tell them "it's all in your head". Lol. Not really Barbara, I am not a cruel person at all. It just peeves me how people think it's so easy to control this type of pain when they have never experienced anything like it themselves.

    I really hope your PHN has improved & I would love to hear how you are going now. Any tips would be greatly appreciated as well. Best wishes,

    Kitty smile

    Ps. I wrote a new Christmas song this year. It's called 'Shingle Bells'  Haha

    • barbara30771
      barbara30771 Hellokitty11

      Posted

      Hi Kitty - lovely to hear from you. To be honest, I haven't commented much of late on this forum simply because I am so fed up with PHN and talking about it. However, when you said that after reading my first comment you felt an empathy I felt I should respond. 

      In January 2015 I decided not to bother with prescribed medications any more. To be honest all they did was sedate me, doing nothing for the pain and I was sick to death of having become another person, I.e. a zombified gibbering wreck!! Since then I have resorted to over the counter pain killers.

      I now use soluable Solpadeine containing only paracetamol and caffeine and also take  Ibuprofin. I also take Omeprazole to protect my stomach. I find this does take the pain away albeit for only short periods of time. 

      I am sick to death of the attitude of GPs and have vowed that when I die I will com back as a seagull and sh..t all over them! I am under our local Pain Clinic but have to wait months for appointments but I cannot get across to them exactly how painful and debilitating this condition really is. My life has really changed, much as you have described. I cannot offer you anything positive I'm afraid, here in the UK it seems PHN is as alien as it is in Oz. 

      I wish you the bet of luck with this dreadful condition. What amazes me is that with PHN being so prevalent worldwide, as proven with this website,  that no body has come up with a solution or cure. Take care and best wishes to you. X

  • Jay48383
    Jay48383 barbara30771

    Posted

    I'm grateful to have found this posting as I can see it is an empathetic group.  While my case is slightly different, perhaps someone has come across something similar and can offer suggestions.  My shingles were along the V! nerve, right side of my face through my eye; this was how I rung in the New Year of 2014.  What has remained is diagnoses as "some form of PHN", but nobody can quite pin it down for treatment.  My symptoms are a sense of an oily outbreak on my scalp and all areas originally effected by the virus, to the point that my hair is greasy within an hour of shampoo and my eye makeup is smeared within a similar time frame.  There is a constant burning sensation, similar to fever.  Three Dermatologists, an Endocrinologist, a Neurologist and an Internest have all confirmed it is not thyroid or hormone levels.  While my symptoms are mild by comparison to what you are facing, the odor and appearance I have have left me a hermit.  Fatigue, depression, lack of sleep are on the list of complaints as well.  

    Has anyone experienced or heard of such an experience with similar symptoms?  

    • Merry19451
      Merry19451 Jay48383

      Posted

      Hi Jay,

      I am so sorry for your suffering. What you are saying is that the ophthalmic branch of the trigeminal nerve (Cranial Nerve V)was affected on the right side, correct?

      While I only had ophthalmologic Herpes Zoster-Shingles twice, and have Herpes Zoster-Shingles in my right ear every three to five weeks for the last 20 years, I am well versed in the excruciating pain, diagnosis, treatments,

      for this. May I ask your age and if you have other diseases? I am a nurse practitioner in the States.

      Are you on any medications to alleviate the PHN?

      As I have recurrent Herpes Zoster-Shingles, I take Topamax daily to decrease the intensity of the neuropathic pain. Neurontin

      (Gabapentin) or Lyrica are recommended for PHN, as well as some additional meds. Also, have you seen a pain management physician? I am wondering if the odor is actually a true odor from your hair vs stimulus from an aural migraine causing the odor, if that makes sense...I also am a migraneur, and one can have auras involving scents, instead of flashing lights.

      I look forward to hearing from you.

      Best Wishes

      Merry Juliana

  • Jay48383
    Jay48383 barbara30771

    Posted

    Thanks for the reply.  You are correct on the diagnosis, let me fill in the blanks.  At the time of occurence I was 49, female, T1Diabetic for 45 years using pump therapy.  Minor kidney damage, so outward signs of cardac problems but have gone through dozens of invasive and laser procedures due to retinopathy (new growth vessels and leaking existing vessels in both eyes) which takes any form of blood thinner off the table for medications.  Through years of trial and error, prior to the shingles situation, I now have a protocol that keeps me balanced on a regular basis.  

    My situation has been deemed "cosmetic"; none of my doctors feel it is worth switching/adding drugs to test theories for relief when there is no intense pain involved.  There is no concern that it has caused my eyebrow and eyelashes to fall out, that being in public later in the day draws unwanted attention to me and that my quality of life has diminished.  I've had headaches most of my life, and while some are intense none have risen to the level of migraine.  

    During the outbreak, I took Lyrica but did not tolerate it well and stopped it as soon as the outbreak cleared.  It raised my blood pressure, elevated my kidney numbers and gave me heart palpatations.  

    I am fortunate that I work from home and don't NEED to be in contact with people on a regular basis in order to function.  I have sought advice from Eastern medicine specialists and the concensus is that the blood flow needs to be increased to the cranial nerve and recommended herbal blood thinners.  I am not willing to risk losing my sight over this.  (After countless retinal hemorrages, the surrounding tissues are unable to absorb any further blood or excess vitreal fluid; next hemorrage will cost my sight.)  

    None of the DIY remedies I have tried provide relief.  I'm used to being in the "we have no explanation" category of multiple medical problems, was just looking for someone else who may have experienced something similar.  I hate being a trailblazer.  (Oh, I'm funny too!)  

    Thanks again for your suggestions.

    • Merry19451
      Merry19451 Jay48383

      Posted

      Jay,

      Regarding the odor, I was wondering if it was a true odor that other people smell vs an olfactory aura ie olfactory hallucination of a migraine. As your Trigeminal nerve is affected re Herpes Zoster-Shingles, and is also implicated in Migraines, you also have PHN. It is difficult to tease out what is what in these cases.

      Regarding the medications, Topamax, which I take daily to prevent Migraines and also as a adjunct for neuralgia, has no blood thinning properties. (I am on Coumadin as I have atrial fibrillation and have had two strokes. Topamax might be better tolerated. Fortunately, I received the clot buster drug tPA each time. Otherwise, I would be paralyzed on each side and aphasic with tunnel vision.) I know you are a complicated patient, as am I. Everytime a new physician sees my chart, he or she inwardly groans. I can still give an excellent history, however.

      Have you thought of using tattoo to your one eyebrow, nonmetallic?

      The other option to explore is Botox. I am not recommending it, just for you to see if paralyzing the muscles involved would stop the flow of oil. Just a thought of thinking outside the box to help get you socially active.

      I hope these ideas help!

      Know that you are not alone. If you need to chat about anything, we are here for you.

      Best Wishes,

      Merry Juliana

    • Jay48383
      Jay48383 Merry19451

      Posted

      Thanks for all the suggestions and I will look into Topomax.  

      The odor is real; my pillow requires Fabreeze each morning and washing each weekend.  As far as the tattooing, I use an eyebrow pencil when I have to go out or thick framed glasses are a good camoflage.  

      The dermatologist I saw wants to shoot the nerve endings with Lidocaine, but that is only an extremely temporary fix if it works.  I'll ask about Botox next time I go.   

      It's such a pain in the a$$ to train a new doctor; they don't understand that while THEY have lots of patients to care for, we have only ONE patient.  And don't get me started on the medical students who come in with a doctor during an office visit.  rolleyes

      Thanks again for the suggestions, hope you are well.  Jay  

    • Merry19451
      Merry19451 Jay48383

      Posted

      Jay,

      Please know that I was not questioning your state of mind, as I am well aware of patronizing physicians. My identical twin has olfactory auras and I have visual and taste auras.

      Let me know how things work out! It sounds as if your DM-1 is under good control.

      Regarding your eyes, I had Scleritis bilaterally several times, as well as Zoster Ophthalmicus twice. Very scary...Chronic disease takes it toll, and only the ones who have diseases can truly appreciate what we go through.

      All the best!

      Merry Juliana

    • phred3
      phred3 Merry19451

      Posted

      Hi,

      Recovering from Herpes Zoster Trigeminal nerve V3 - right side. Started out with numbness in scalp, progressed to numbness of tongue, then sores on tongue, more mouth involvement (gums, teeth), then large sores on lower jaw, sore in the ear, rash on cheek and behind the ear. Over time sores are gone, constant head ache and neck ache are gone, shooting pain from ear into the brain pretty much gone. End of week 4 and my problem is I need some sleep. Tongue and lower lip are constant "pins and needles" like when novocaine wearing off after the dentist. Where the sores were, including one in ear, ok/tolerable during the day but can't stand having anything (pillow, covers) touching. Prescribed  oxycodone 10mg at bed time doesn't get me to sleep, prescribed  codeine 30mgx2 is better for pain but causes itching which also prevents sleep. Any suggestions for some knock-out drops/pain relief at bed time?

      Cheers

      Fred

    • mmsmith
      mmsmith phred3

      Posted

      I used a product called BioFreeze to numb out the sensitive areas so I could fall asleep. If I woke up in the middle of the night I would reapply. It comes in spray or gel. I also used a silk scarf. Good luck. Shingles suck.
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