... and came across this support group. I've been suffering from this PHN for over 20 years now, and it seems to be getting worse. I got the shingles on the side of my neck and to the top of my head. After they went away, I started having all these strange ailments (mostly in the neck) and it took me18 years to find the right doctor who could tell me what was wrong. What are some of the things that you suffers do to relieve the pain. I'm on gabapentin, have had several nerve blocks, physical therapy, and many other things that the doctors had suggested. Thanks, Keith
I have PHN on the right side top side of my head, right forehead and right eye and have found that Lyrica is the best thing available, but it doesn't do enough to make a dent in the pain. I found a doctor who shoot up the top of my head and part of my forehead with Botox, not approved by the FDA, so insurance wont cover it, the results were incredible. Before that I was on a very heavy dose of the Fentanyl patch for nearly 2 years, which took me two months to get off going through withdrawals.
There was a trial study done in Australia on 10 patients and 10 out 10 got relief, I contacted the manufacture and they said they are not doing any study's any longer and that the studies prior were below the shoulders and are stopping all studies on using Botox for Neuralgia ( They have a new pill that is undergoing clinical studies now), so I decided to be the dummy of my own trial and find a doctor that would do it for me, after sharing the Australia study results, I found a doctor that said she would do it, as she uses it for migraines all the time.. Since the first injections, which I had to go back two weeks later to do it again, she has since learned that it takes twice the amount as a Migraine user in all the injected areas. It has changes my life, I am no longer on the Fentanyl patch or any other type of pain killer, it numbed the pain out of the area's that could be treated, exception, is my eye area and eyebrow area, as there is nothing anyone can do for the eye or the area around it. but for 75% of the PHN, it is near pain free. The studies done using the Botox were on the body below the shoulders and as I mentioned, 100% of the patients found it to help them.
I hope this info helps you, as my doctor was very excited that it help me.
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