PHN TREATMENTS

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I’ve suffered with PHN damage for 3 years now. Since having my daughter 15 months ago the pain is more often and more server.  Some times bad enough for morphine shots at the hospital. I luckily do not suffer with this on a daily bases but it’s becoming more often then not now and I’m at a loss of treatments to try.  

I’m a nanny/cleaner and mummy to a 15month old so being bed bound on strong medication is not really a option for me, although some times necessary. 

I have tried and use some of  the following:

Physio 

Lidocaine patches

Chilli extract cream

amitriptyline

gabapentin

Slow release morphine

Codeine 

Diazepam 

Tramadol 

Back supports 

Heat patches 

Any other ideas/treatments that have worked for you would be greatly appreciated. 

Thanks 

Hailey 

 

 

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14 Replies

  • Posted

    Hi Hailey,

    I'm sorry that you are struggling with this. I have had PHN for over 6 years now and I am having treatment at 2 different pain clinics ( for 2 different pain conditions.) I am currently taking a synthetic opiate for a different problem, and this has fewer side-effects than morphine. I have been having high dose Capsaicin patch treatment for my PHN in the trigeminal nerve, and had a small amount of benefit from it. In January I will be having Botox injections which my consultant has had some success with in trials. It would hopefully not have the unwanted side effects that drug therapy has. I will report back.

    Other things that I have found slightly helpful have been mindfulness meditation and chair yoga. I am also having counselling because I have found the pain difficult to deal with, having had to take a medical retirement as a result of the debilitating effects of this. I think the solution will probably lie with a combination of treatments.

    I hope you have some success in managing this. I can't imagine how hard it must be to deal with while looking after your little girl, although I am sure she will be a delightful distraction!

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    • Posted

      Thank you Susanne, reading through other threads I’ve noticed so many people have had to stop work due to this. Unfortunately I’m only 33 so medical retirement is not a option for me but fortunately it isn’t a pain I have to deal with on a daily bases. If comes and goes as it pleases often coming on very fast and leaving me no alternative for the pain then Iv morphine. This has happened 4 times since having my baby and once whilst I was pregnant. I try manage it and maintain my gabapentin as best as I can but it’s all trial and error at the moment working out which dosage best suits me. I’m looking into Pilates classes and water based hydro classes for when I don’t have the pain to try and strengthen my core to reduce the flare ups. I’ve just ordered a back brace that is for back issues and nerve damage so I will give it a whirl and see how I get on with it. Where are you based? I don’t know if they will offer Botox injections on the nhs here but if it works well for you I will inquire privately. They are very hesitant to do any form of injections incase it sets the nerves off even more. I ended up having to be have a general anaesthetic when having my c section with my daughter as they refused to give me a spinal block incase it set it off or caused more damage. It’s been a pretty rocky road so far and I’m Hopful after joining this forum i will have other options to put forward to my pain management team that doesn’t include being medicated. 
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    • Posted

      Hi Hailey,

      I am in Birkenhead, but go to the Walton Centre in Liverpool for my treatment. I have been referred to the pain clinic on the NHS, and my GP leaves decisions about other treatment to the pain consultant. The clinic has been running a few trials that I am aware of, and Botox has only just been approved for use in PHN of the nerves in the face. (Mine centres on my right eye and goes across my forehead and cheek and into my scalp. For the capsaicin patch treatment I have to have my head shaved, so looking forward to having Botox and keeping my hair!)

      The nurse specialist at the clinic says that they are hoping to get funding approved for another treatment called Trans magnetic nerve stimulation I think. That was successful in trials. I was offered a stellate ganglion nerve injection for pain in my chest and they said it might work for both lots of pain. I was a bit scared because I have low blood pressure and the injection can lower your blood pressure by a third, so I will only try this if nothing else works

      I also take gabapentin, but I don't find it very helpful. My pain is there all the time, but flares up to be almost unbearable sometimes. I can't go outside in cold weather or if there is any wind. The consultant says that there's a lot of research going on, so he is optimistic that we will find a solution in near future. I certainly hope he's right!

      Good luck!

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  • Posted

    I'm so sorry, Hailey. I've been dealing with it for only a year and have learned a few things, which you may have too. First is that many of the meds don't give much relief, you need to have a mixture of meds, change in behavior and it mindset to find some relief. Go to the thread about depression and PHN started by Charlie, you'll get some suggestions and some positive news. There IS improvement, but it's very gradual. Where is your pain? It sounds like the back and chest, which is where mine is. Unfortunately for you, I've found the greatest help is decreasing stress and limiting activities which increase pain. But in your job and with a small child that's challenging. For me, reaching, bending and lifting increase the pain. That's probably what you do for most of your day, but are there ways to decrease it or modify it?

    I use a regimen of Asperceme/Lidocaine pain cream 3 times a day (the pain patches can only be used once a day), Gabapentin (I was at 2700 mg per day, now down to 1400 mg), two extra-strength Tylenol three times a day and a prescription NSAID for a previous issue. But I did have to quit working and I'm careful with what I do to my body as far as lifting etc. For you, it must be one continuous pain stream, due to you activity, how hard that must be!  I've had stretches like that, but I'm able to rest.

    Are you on any meds right now? I HATE Gab, but it does break up the pain signals and helps with the pain. However, it takes a while to get to a therapeutic dosage. If it is on your back/chest, limit tight clothing or bras. When it all hurts, it may be hard to tell what's making it worse, but soft, light fabric has helped many of us.

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    • Posted

      Hi babs, thank you For your response yes mine is in both sides of my back from my shoulder blades downwards any where in that area. I’ve unfortunatly had shingles 5 times so my nerves in that part of my back are mostly effected. I’m lucky in the fact that it isn’t constant but unlucky in the fact that the slightest thing can spark it off. I’ve ordered a back brace for when I’m working one that specialises in nerve damage but it’s all trial and error for me at the moment. I agree a good mind set helps me knowing that it will pass but I’m pretty much at the end of my tether being fobbed off with pain medication all the time. I find the chilli extract cream works well and my tens machine when I’m not using my lydocaine patches, I’m still trying to find the gabapentin dose that works for me. All trial and error at the moment. I’m looking into starting Pilates and hydro exercise when my back calms down abit. Have you tried any thing else that I’m not already trying? 
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    • Posted

      I'm sorry, not I don't have any other suggestions. But I am surprised that a back brace may help. For many of us you don't want anything touching your back. However, I have noticed that sometimes if the pressure is spread over a wide area and dispersed well, there isn't any pain. But other times wearing a tight jacket is uncomfortable. All I know is it seems to be an unpredictable sonuvagun. Whenever you think you can't take it, it can improve OR when you think, hey, it's under control, it sneaks back.

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    • Posted

      Hi Babs:

      You are so right - it took me a long time to find the right fabric with the right fit.  I could never wear shirts ever - had to have a soft cotton t shirt underneath that was snug but not tight.  As you know loose fitting clothing is torture and if that is rough even faster torture.  I also found with the right clothing it extended the time before the pain became unbearable and one had to rip it off.  I have PHN on the torso - above the belt from and back in an ellipse shape.  Also had to sleep on the opposite side and could not have covers on me.  Difficult in colder climates.

      You are right a very elderly doctor told me and hugged me "i am so sorry for you but after 5 or so years patients do find it becomes easier to live with".  He was right after about 5 years there were fewer hours of down time and the overall pain was lower per day - fewer hours of 8plus pain and more hours of 4 level pain.  But far from getting one's life back.  

      regards

      jim

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    • Posted

      Hi Babs,

      I am rather sceptical about the back brace but I do find that when the pain strikes having something putting pressure in that particular space helps a little so I’m thinking of using it and putting a scrunched up warm compress in to that area to apply pressure and heat. (Cold compresses spark the nerves off even more for me) Also as I’m a cleaner, nanny and Mum the brace should help with my posture and movement so hopefully it will support my back enough that I don’t spark the nerves off when doing certain movements. Right now I’m just about ready to try anything as when it strikes that’s me out for at least a week or two and it causes many issues for me. As I’m sure you all understand life doesn’t stop when you have a toddler! I’m finding this forum really helpful and I finally have others to talk to that understand that intensity of the pain when it strikes. My heart goes out to all of you that have this daily! 

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    • Posted

      I've found too that just coming here helps. No matter how supportive family and friends are few of them understand. It's interesting that for you heat helps, which is the opposite of so many others. But wait a day or two, like a toddler it can change, right??

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    • Posted

      Haha yes pretty much so. 

      Heat only helps when I first feel the niggle of a spasm coming on. A full on nerve spasms only medication works and heat and cold can set it off even more. When I am having a full on nerve attack only morphine can stop it. It literally takes over me and I’m screaming in agony. I literally do not understand how people can deal with this every day sad

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  • Posted

    Hello Hailey:

    I am very sorry to hear about your struggles.  I know first hand as many on this site the impact on quality of life and on trying to be part of and participate as a family.  I have tried all of the above drugs plus fentanyl and oxycontin.  Fentanyl dose was very high at a 100 mmg patch every 48 hours.  The narcotics started to become a competing problem with the pain.  I also tried mindfulness, hypnosis, acupuncture etc - one tries anything to relieve the pain.  I also went on disability and ended my career.  The only treatment that I have found that has actually provided relief is cryogenics - application of a liquid nitrogen spray to the impacted area.  The biological plausibility is not clear and most physicians and dermatologists will not believe in it.  The Dr. in South America that has published says many patients have had a total cure - I have found that the treatments provide relief and they have had to be repeated but no cure for me.  Key is that the spray is sufficient enough to make an impact but not freeze the skin.  Dermatologists are concerned about the cosmetics of it and will typically not apply enough.  I am fortunate my physician who has seen me struggle for years is now doing the procedure an takes it to the point it helps.  I cannot give you the link on this site but if you google:  post herpetic neuralgia Calandria and cryogenics you will see the paper.  The Dr even sent me a video showing the spray intensity.  

    Keep trying.  Has been over 7 years for me.  And I did get the shingles vaccine recently just to make sure another bout doesn't happen.

    jim

     

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  • Posted

    Hailey I forgot to add I also had a neural stimulator implant - unfortunately at the end it didn't provide much relief and I need to see the neurosurgeon to have it now removed.  Also at the end of its battery life.  The device sends impulses into the spine to the brain and the electrodes are implanted to direct the signal to same pathway for the area of pain.  The idea is to compete with the pain signals.  Unfortunately it didn't really deal with the sensitive touch pain of shingles but did help with a secondary deeper pain that is intense and stabbing for me.  It was a major procedure and they even administered truth serum - to ensure I wasn't faking the pain for insurance purposes.  As if one wants neurosurgery to begin with plus for me there was no insurance payout per se - disability from my employer. The insurance company actually used the stimulator implant as an excuse saying I must be cured after having the operation.  Be very careful in how you position yourself.  Most of us don't like to constantly complain - even a casual phonemail to update my address and when asked how are you today - I said ok.  That was used against me in an update of address call.  One doctor said be clear:  "I am in terrible pain and God willing one day I will be able to work and be a productive member of society as I was before this terrible disease".

    jim

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  • Posted

    I am an Anesthesiology trained Interventional Pain Physician who trained at the Mayo Clinic. 

    There is an article in ASIPP Pain Physician magazine that reported early intervention with subcutaneous injection of Lidocaine 1% with Kenalog has significantly reduced pain from PHN shingles and also reduced the percentage of chronic pain from PHN (shingles). This procedure is very easy to perform and can be done by your primary care provider. 

    The success of long term relief is based upon how early this modality of SQ injection of local anesthetic and steroid is performed in relation to the diagnosis/discovery of the onset of shingles.

    Dealing with chronic PHN pain can be very difficult. As health care providers, we usually utilize oral medication such as Gabapentin, Lyrica, Cymbalta, or older TCA medications such as amitriptyline or Nortriptyline.  We sometimes prescribe Lidoderm or other topical agents such as capsaicin type of creams. These pharmacological agents seems to help some patients with various levels of success.

    Sometimes, we perform fluoroscopic guided epidural steroid injections (ESI). If the pain is severe and intractable to less invasive treatment options, we sometime resort to dorsal root ganglion (DRG) or spinal cord stimulation (SCS). 

    Information in this article is not to be construed as providing medical care. Please be aware that you should always seek guidance from your health provider for your medical treatment.  

    Hope this helps. 

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    • Posted

      Thanks for the info Doc. It does confirm for me, that most of us are doing the correct thing regarding our treatment. The sad reality is that most people don't realize they've got shingles and/or the doctors don't diagnose it in time for the early interventions.

      Despite diagnosing it in both my husband and father over the years, I had no idea that the pain I had (without any rash) was shingles,14 months ago. Then there's confusion as to where the pain is, believe it or not. It can be so diffuse or referred that even though my doctor explained the nerve location along the bra elastic line, I have pain on the upper right shoulder, upper left shoulder, chest, lower right and left back etc. Wouldn't be very difficult to find the correct nerve to inject?

      At least they're doing some research on it. Are you familiar with the work of Dr. Robert Dworkin? I learned about him from another researcher. He's been doing work in the field for many years, but hasn't quite found the answer yet.

       

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