I have suffered with post herpetic neuralgia since Febru...

Brain and nerves
1

I have suffered with post herpetic neuralgia since February 2001 when I contracted a bad case of shingles. The shingles affected my left hand side; I had a rash from groin to hip which also became infected.

The pain at the beginning was so severe that I could not function beyond it. It took up all my resources just to get through the day. One week after I contracted the initial shingles disease my mother had a stroke. She died within three weeks. I do not know if my emotional pain had anything to do with my subsequent long term neuralgia. My doctor did eventually prescribe famciclovir, but I think it was too late to prevent the phn. It was not until three months had passed without any great lessening of my pain that my doctor referred me to a specialist.

This doctor prescribed amytriptyline and gabapentin which I then continued to take for the next few years, along with 7.5mg dose zopiclone pills (later reduced to 3.75mg)when I really could not get to sleep. I developed an intolerance to the gabapentin eventually. Itchy skin rashes which burned, expecially when I went out in the sun.

A further specialist at the pain clinic I was referred to tried a couple of different drugs and I eventually found that clonazepam provided the same relief as the gabapentin but without the rashes. I am now developing an intolerance to this as well though.

I continue to take amytriptyline and have started cutting my clonazepam pills in half to try and cut down. Although the skin rashes have reduced the pain relief is also lessened and, whereas the evening and nightime (I suppose when my mind was less absorbed with work, etc) used to be my worst times, I am now finding myself increasingly distracted by the pain during the daytime.

I have a TENS machine which I often hook up to in the evenings but all I am really doing is swopping one sort of pain for another. I have to turn up the dial quite high for it to give me any sort of relief.

I don't know what my prognosis is. I sometimes think that the pills I take must be shortening my life but that I wouldn't really have a life without them.

I have been taking this cocktail of medication for five years now. I try different combinations and strengths. I try to get to a balance of maximum pain relief for minimum pill taking.

I have not been back to the pain relief clinic for over a year and my pills are on repeat prescription so I haven't seen my doctor either. Mentally I cope, just. I don't think that my pain has lessened that much since the first year, I have just got used to it - what else can I do.

If there are ever any new drugs or treatments which anyone wants to trial then I am more than willing to be a guinea pig. I've got nothing to lose.

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I am so sorry to hear about your suffering and that you have found no cure. I am searching for my mother as she has been suffering now for three years and yesterday was crying with the pain in her leg. She has been through a lot in her life including getting over cancer and she has told me she would sooner have the cancer again than the pain she is living with at present. My mum is a fighter and never gives up, she has problems with her kidneys now so cannot take too much medication. Yesterday she was crying, so I have been doing some reasearch on line for her as our doctors are pretty useless. So when I came across your experience my heart went out to you as it doesn't look hopeful for a resolution.

i just wondered have you tried, coconut oil? Lidocaine patches? Anecream lidocaine 4% or terracil cream?  These are what I have found this morning and I wondered if you may of tried them and if so did they help at all!

oh, and tens machine or acupuncture? 

I would really appreciate a reply if you can and if I can help you as well as my mum I will of achieved some help for this debilitating illness that leaves people suffering in silence!! It's only now that a vaccine is available to prevent shingles and I will be pushing for it after seeing what my mum has suffered and still suffering like yourself and many other.

thanks Karen 

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Hi Karen, my heart goes out to you. My mum's been suffering terribly for over a week now with PHN and I am horrified to feel so helpless (and so despondent after reading this forum). It is heartbreaking watching her scream and cry though the attacks. I am so angry at her doctor for not prescribing the anti virals for the shingles that might have helped her avoid PHN "because you're already halfway through the shingles". He never even mentioned PHN, so I shot a heart-rending video to show him the extent of her suffering. Hoping and praying that we can find the right cocktail of drugs (or something better) eventually and that this passes soon, for both our mums and everybody else on here. If you find any great tips that you haven't already mentioned above please do share them. My mother's skin is still too tender to use the patches. Big hugs to you. 

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So sorry to hear of your suffering. I've had the same problem for 16 years now. I've been on the high dose of Neurontin, Elavil, Clonazepama, and Ultram since first diagnosed. It's like living a nightmare with no end. The pain never goes away and it changes your life in every way. All you can do is try to cope the best you can. Please don't give up, maybe there will be something new developed soon. Remember you are not alone, and sharing your experience helps. Hang in there and keep checking this forum 

 

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So sorry to hear of your situation. I'm in the same boat with the PHN pain for 17 years now. A combination of Gabapentin, amitriptyline, Clonazepam, and tramadol helps me to half-way control the pain. Have you tried Lyrica? I've heard that works for some people that can't take Gabapentin. Maybe you could go back to the pain management doctor and ask? If it's been a year, perhaps they can adjust your meds.

good luck, please don't give up!

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I understand how you feel, you've certainly been thru a lot! I've had PHN for 16 years now affecting my leg and foot. Makes it very difficult to get around or go anywhere that isn't just a quick trip. I'm still on the gabapentin, amitriptyline , clonazapam, tramadol. I think it helps some, I'm afraid to stop and find out! The pain never goes away it's just somewhat controlled. I think all we can do is keep researching the internet for possible clinical trials and new medications. Hang in there, maybe one day there will be something to regenerate the damaged nerves. Wish I had better news for you, but you are not alone!

P. Morris 

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I'm so sorry to hear all the suffering ... I had shingles twice when I was 12 then 13 .. Once on my back 2nd lot on my ear and neck . Now I have terrible neuralgia in my head down my face . The pain is awfull . Lucky it lasts maybe a week then returns maybe 6 mnths later . I very been given tramadal painkillers not tried these yet as not good on painkillers . I'm suffering at the moment 😞

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I am so sorry but I have further bad news for you.  I had the shingles and terrible post shingles pain.  I used a tens unit and it did subside.  Now it is back and no one wants to help me.  The doctors here are a bunch of egomaniacs and all they care about is money.  As soon as I came in, he (the great one) said "I know what it is".  Wants to cut the nerve off my back.  Can't do that.  Am trying to relax.  I should use my tens unit every day but at 69 and in a lot of "other pain" just don't have the energy to figure it out.

I have some elavil (amtripiline) here but it makes me hungry and am trying to lose weight.

Sort of given up on the doctors.  Most don't know what they are doing, run around in circles and nobody cares.  

BEST WISHES TO ALL MY FELLOW SUFFERERS.

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 hi  i got the shingles in sept 2016  and was a few days ( 3 or 4)late to get the meds  my rash/blisters on my left torso.not as bad as some pictures ive seen. 3 weeks  in / major pain my wife has a nervous breakdown. so major stress .hardly any sleep. everything that could go wrong did. so i have phn where the blisters were. i have some scarring but they seem to be disappearing slowly. i take 600 mil of gabapentin 3 xs a day. also medical mj.  i have a nutri bullet that i load up / with kale spinach,braccoli almonds,apples, chia seeds ,coconut oil, bananas,oranges rasberries ,blackberries etc.  it seems on days i drink this my pain is less. if i have like bacon /eggs/milk meats and im thinking suger is way  way bad. i have more pain. i also started taking t NerveRenew  a week ago im going to stick to it 4 at least 4 mo. they say it does work in time it has an oil base b-12 which apparently doesnt get flushed out like a waterbased b-12.so it can build up to high levels . they say it works, i suggest calling them . they have a one year money back gaurranty .  also im learning to deal /stress and when im working on a project like  painting actually rolling out walls i thought id be in more pain but actually the opposite.(i read that on a forum) im 61 so odds were against from the get go.   my loving dog of 14 years passed  a year ago   and that might have been part of it . she was my best friend of my entire life. i took it pretty hard and still cry alot like now writing this about her. so i try to thinkof all the happiness she brought me.    so  i found the gal who supplied the mom, and she still had the bloodline and now we have a5 mo old  pup thats like her great,great niece.what im getting at is she brings me such joy A big positive.!  a kitten would do to   were suppose to try our best to keep our heads up. and it can be very  hard to do.   i think at least 10 or more people have got the shot cause of me.  i would give any thing to have got the shot and when im better i guees its a good idea to get it, i would like to see the commercials show the nasty side, phn side of this sleeping monster .the pot really helps,diet is big, stress is bad, excersise is good. i walk my 2 min australian shephards and am going to start more excersising. plenty of sleep and rest.,,sleeps a little harder  gabapentin kinda messes up your  routine your body has been use to all  its life. i also have a jacuzzi tub i take a epson salt (magnesium kinds) baths  it seems to help. also 1/2 teaspoon of powdered magnesium. in a glass of water. i hope this helps you and any others. and sometimes i think just corresponding to others  might help this is myfirst reply.   and i welcome any correspondence if any one needs to talk . thanks jeff schneider