PHN TREATMENTS

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!

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.

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

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

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.