So, what happened with our PHN group?

I have no idea what that is. Can you explain how you heard about it and why you think it may help?

Hang in there. I've been getting bouts of PHN for the past 12 years yet I know someone who suffered for 6 months and that was the end of it. I take Amitriptyline and Tramadol, it seems to work for me.

wow, I mean 12 years is a lot to grasp!! Well I usually take advil and panadol! THX

Myrna

I'm sorry the anti-virals didn't prevent of minimize your recurrences, they help a number of people. There's no answer to your question as to how long this may go on. Has a doctor offered any other options for why you keep getting shingles? There are other forums for that topic and they may have some suggestions.

my drug are Tramadol and Nortriptyline. 2.5 years. Pain is constant, as in every second of the day, but only severe at night and with storms.

My shingles was October 2016, and at about 3 months I finally noticed a tiny improvement, and I've continued to have incremental improvement. Mine is in my back/shoulder area (bra line, shoulder blade) but of course the pain extends. I am on an RX NSAID, was for years before my PHN, and gab. The gab has caused hell, as every time I VERY slowly decrease the dose I go thru withdrawal, which greatly increases the pain. So I can tell the PHN is much better, when the WD ends, but I still have some problems. I also use Aspercreme with Lidocaine 3 times a day, along with Tylenol. I avoid bending, twisting and reaching movements that worsen the pain. I guess I'm just lucky. I know several other people who over time had almost a complete disappearance of their PHN. However, I had to quit work due to the PHN and the gab side effects, so I can rest and avoid stress than many others can't.

Hi! I know a girl who had PHN for two years on one leg, and the TENS machine was the answer. She used it faithfully and after a while, the PHN was gone! I tried it and it didn't help for me, but wanted to encourage others it is easy and worth a try.

I've had PHN on my trunk for ten years, and tried many things. Although none took it away for good, some helped wonderfully for a while,and then my body rejected them, odd, but true. I want to share some things that helped, in case it helps somebody else:

First: Peppermint essential oil, rubbed in straight. This gave a lot of relief for several years. Also, as others have mentioned, ice cold beanbags I keep in the freezer are terrific. Lately, I am using Cryoderm Gel. Because of my ongoing condition I buy it by the gallon on Ebay, and I am blessed to have a husband willing to rub it in when the pain starts to escalate. Recently, after applying the cryoderm gel, we started rubbing in a dropper of essential oils clove bud, & tea tree in a carrier oil(I use olive oil), and end up with a dropper or two of DMSO, which is warming, and takes the other products in deeper, so the whole little massage treatment takes about 7 minutes, but it would be hard to do by myself because I can't reach that well.

This combo stops my pain for hours.

Now I have a question: If any of you knows of people who actually got permanent healing from PHN how did they do it?Also, have any of you tried accupuncture (I did see one comment), and are you willing to share more about it, how long you'd had the PHN and how long it took before the accupuncture showed relief? I need some encouragement, feeling like we have tried almost everything (even frequency specific microcurrent), and I still have this drag down pain. Hope this post isn't too long for you all!! Blessings! Charity

Q. Now I have a question: If any of you knows of people who actually got permanent healing from PHN how did they do it?

A.I know several people who had PHN for a year or longer and eventually it almost totally healed. They felt that under extreme stress or physical exhaustion they'd still get twinges. I've been told by a researcher that if you see ANY type of improvement in the first 6 months it bodes well for further improvement. I do know of others who had it for 10 years and had sudden healing.

It's been 3+ years for me, I was on gab (at my highest 2700 mg/day) and have tapered slowly for 3 years. I took my last dose 6 weeks ago. As I decreased the gab, I noticed that my pain improved. During the withdrawal from gab, the pain would intensify, then after several weeks it would be better than when I decreased the meds. I have learned (mine is in my back/chest/torso) to avoid twisting, bending reaching and lifting motions that increase my discomfort. I also avoid any clothing that adds pressure to my back. I have allodynia i.e. extreme reaction to any slight pressure. So yokes on clothing, hoods, turtle necks, even heavier sweaters will cause pain. I wear loose soft clothing like large fleeces and down vests.

Q. Also, have any of you tried accupuncture (I did see one comment), and are you willing to share more about it, how long you'd had the PHN and how long it took before the accupuncture showed relief?

A. Never tried acupuncture, I've heard of mixed results with it. All I've done is used gab (HUGE mistake) Tylenol, Lidocaine pain cream (OTC) and an NSAID I've been on for years. I did have to quit work due to the pain and memory/cognitive problems from the gab. I think not having a job (while depressing and isolating and times) helps, and our daughter is married, so I'm not raising children.

I don't know why some people heal more than others. It could be age, over-all health, the location of the PHN, who knows. But it can still happen. If my pain worsens, I try and stop what I was doing, take it easy and usually changing my top helps. Good luck!

thanks for the ideas, Charity. I am still suffering plenty. It's been 2 years and 9 months. I can't even imagine having this for 10 years but unfortunately my pain has leveled out and doesnt' seem to be improving. I haven't tried the cryoderm gel or peppermint oil and am game to try new things. Yes, I have experience the same thing you have - that a product will work for a while and then stop being effective. I tend to get more relief with products that have a heating element. I like a bean bag warmed in the microwave, I use Icy Hot and Tiger Balm. My favorite product right now is Mary's CBD with THC (50/50). I get it at a local dispensary in Colorado where I live. CBD doens't work by itself but combined with the THC it is helpful. I stopped using Lyrica, Gab and other drugs that made me feel like I could all asleep standing up. I take Nortriptyline (daily) and Nucynta (opioid) when needed. I also do Epson salt baths and I get incredibly itchy so I scratch the hell outta it. The area wraps from my spine around my back to my chest. i hate light touch, can only sleep on one side and the barometric pressure changes every time wind or storms roll in make me absolutely crazy. I still have to work full-time because I carry out health benefits. I feel exhausted most of the time but am trying to make the most of the rest of my life, which is wonderful. I feel like a different person because of the pain. I haven't' been very active with the chat lately because I get down reading about pain lingering for so long. Thanks for sharing your story and ideas! It's really helpful. Kris

Kris, I see you had used both gab and Lyrica and it's possible that you're still dealing with withdrawal symptoms from those drugs. Not everyone has problems with them, some can stop them rather quickly with few or no side effects. But for others, they have to go very, very slowly and then still have withdrawal. That can last many months and pain, exhaustion and emotional issues are part of the withdrawal process. For me, taking 8-12 weeks between decreases of gab, I could tell when I felt better (improved memory, waves of fatigue disappearing, pain greatly decreasing). So at the end of that last drop from 400 to 300, I had several weeks with no pain at all. Now that I'm off gab for good, I know I'll have good and bad periods, but hope to be pain free in a few weeks or months.

It can happen, but the hard part is not knowing if it will. But there IS hope. When I got shingles, then PHN I kept reading that PHN never goes away. Then I met people who DID see improvement. It just goes so incredibly slow (like months) that it doesn't seem like it. I have to look back to 6-12 weeks ago, then I notice that it no longer hurts to brush my teeth, I can carry more things in my purse etc. I've made a LOT of adjustments to avoid increasing the pain which I truly believes helps with healing. Remember for some, the "pain" is no longer from PHN it's from the drugs. I hope you can and will get to that point.