PHN things that help

Hi Tamara,

I too have opthalmic PHN from shingles.  You seem to have a good and healthy attitude toward the problem of PHN:  Accepting that nothing is 100% effective and finding things that work partially to manage the discomfort.

Besides what you've mentioned that helps, I've found two other things that help.  Aspercreme or any other topical cream that has salicylate, and hydration.  I occasionally get severe bouts of itching, and have discovered that these occur when I'm a little dehydrated.  A large glass of water results in relief in about 30 minutes.

The "nerve stimulators" you talk about sound like spinal stimulator implants?  These involve a surgery in which an electrode wire is implanted inside the epidural space along the spinal cord, and currents are supposed to interrupt the pain signal.  I used to work extensively with a doc who performed this surgery, doing pre-surgical psychological evaluations.  Though I did not get to follow up with many of his patients afterward, the general story I have heard from many other patients who underwent that surgery was that it seemed to help initially and then did not work so well.  It's not a problem-free surgery.  Any time you mess with the spinal cord you risk a lot. 

Thanks for sharing what works.  This is a very helpful thread for a lot of people. 

I think different things work differently on different people.  I tried acupunture twice a week for a couple of months.  The first few trips seemed to lessen the pain for a couple of days.  But, after that, there was no noticeable help so I stopped.  I have tried about everything there is that does not involve pils or topical cream.  Nothing seems to have worked for me.  So, I medicate and apply topical cream.  

I ve never thought about acupuncture. I very had the PHN since 2008. I seem to be able to function with just the lotion. I have been through Lyrica and Gabapentin....Lidocaine creams work for me. I have to just try not to get overheated as this flares up the area. Can't wear tight anything around my waist ever...

Hello. It's been a while I know, but I was checking these contributions and came across yours. How long did you suffer from PHN? Did the blood plasma trick really end up eliminating all your pain?? Can you give me an update? What exactly did they do and at what type of facility did they perform this intervention?? Thank you, Deb. 🌺🌻🌺🌻🌼🌻🌺

so sorry you aren't finding anything to really help you. I find that anything warm makes my area itch and hurt. Everyone I have to shower to wash my hair it's followed by pain. I take baths unless washing my hair. I got off the Gabapentin as well for small reasons. Sure wish Dr's better understood the pain.

Terrie, I'm so sorry for your suffering. I have been there. Fortunately I am better now. My doctor, a dermatologist, has been giving me steroid shots in the most painful areas and it has worked. He uses a medicine called Kenalog. He explained to me that he uses 5mg and also puts a numbing medicine in it too. Initially my painful areas hurt too much for him to inject me in those spots so he first gave me 1 shot in my hip. That shot was designed to bring down the pain a few notches in all of my painful areas and it did. Two weeks later he injected me several times with the Kenalog on my back, in my underarm, and the top of my breast. It took almost 2 weeks but I got more improvements. Two weeks later I went back to him for another round of injections. I'm so much better now that I can lead a normal life again. I only have a minor irritation now in those spots. Hope this helps you and others. Hang in there. It is so hard.

Hi Terrie,

Welcome to our thread on this site, "PHN Things That Help."  People on this site generally are focused on how to best manage PHN, since it is such a difficult condition.  It sounds to me like you are in the early phase of PHN, so I'm sorry...I know, however, that this is the worst it will be.  It does get better with time, but very slowly, not fast enough for any of us.  I'm 26 years out from my PHN.  It is LOTS better, but I still have to manage it.  Some people find it goes completely away after some period of time. 

I'm glad you are going soon to a pain management program.  They are sometimes very helpful.  I'm concerned about the opiate [Tylenol with codeine] and tranquilizer [lorazepam] you're on, as they are addictive and will generally provide less and less relief with time.  Most pain programs will try to find, with your help, non-addictive solutions that will work longer term [I have worked in such programs as a psychologist in the past, am now retired]. 

Gail's suggestion of the steroid injections is interesting.  I've not seen that before but she says she's lots better.  There are many things that others on this site have suggested that help them, but I tend to look at the things that more than one or two people find helpful.  The things I have heard most frequently here are lidocaine gel, Aspercreme, and some form of gabapentin [this one you're already on]. 

A BIG deal in management of long-term pain is to NOT look for things to immediately relieve ALL the pain.  Nothing will do this.  So, you have to look for things that help a little, and use several of them.  This adds up to significantly better control of pain, and a better life.

Effexor:  I'm sure your pain program will work with you on this.  It's a good antidepressant.  These all take about 3-6 weeks to kick in, and it's important to work with your doc on adjusting dosage to find the right dose FOR YOU.  Most people I've seen on Effexor get good results between 150 and 225 mg., but everyone's different.  Work with your doc on this. 

Watch out for opioids, please.  After 35 years of specializing in pain management, I've seen almost no one whose long term use of opiods gives them a better life.  Short term, yes.  Long term use tends to result in a person who is always sedated, and uses more and more until they need help with addiction. 

Hi Charlie,

The steroid shots I wrote about is hard to find online. Once I learned the name of the medicine in the injections (Kenalog), I googled that and, for the first time, I read about the exact procedure that my dermatologist used on me with great results. More doctors should have training in this, as it was a miracle for me. I'm still on a low dose of Gabapentin and Nortriptyline. I asked my dr. last week if the effects of these shots would eventually wear off, or is it permanent. He said it's permanent. 

You made some very good points in your message to Terrie.

Gail,

I found some info on Kenalog injections online.  Sounds like it's pretty new.  I'm not sure if it's a common treatment yet, but it sounds promising. 

Looked up Kenalog.  It's main ingredient is triamcinolone.  I have a tube of this that a dermatologist prescribed several years ago, to use for occasional outbreaks of eczema!  Maybe I'll try using it topically in my area of PHN to see what happens.  Interesting also:  Kenalog is not a new drug.  My dog's veterinarian prescribed it about 40 years ago, for what I do not recall!  The tube of triamcinolone I got a few years ago was not expensive, a few dollars with my insurance. 

Go for it, Charlie! I hope you get some relief with the topical triamcinolone. If it helps you, maybe others will try it. That's what i was hoping for when I posted about my Kenalog injections. My doctor is not young. I'd guess late 50's or even 60. When I asked him why I couldn't find anything online about the injections, he said he didn't know, but that he got his training on the West Coast. His training would have been decades ago. Good Luck!

I will certainly let you know the results.  I'll wait until I've had time to give it a good try, at least a couple weeks.  Used it last night, had no significant problems in areas I used it, but one night is not an adequate trial. 

I still find the Aspercreme [Salicilate is the active ingredient, a non-steroidal anti-inflammatory] works well to decrease itching and pain.  I buy it at Target, get their knock-off brand, as it's cheaper.  Even if you buy the brand name, it is cheap though. 

Hi Charlie,

I was very interested to read your comment about Aspercreme especioally for itch, as I suffer the most incredible itch and itching on left side of forehead, eyebrow and scalp.

I live in Sydney, Australia and we have Target stores here, so that's where I'm heading today. Anything that'll give me even the slightest relief.

I'm now going into my 3rd year with PHN.

Thanks Catherine

Yes, I have the severe itching too.  Being 26 years out, it is occasional now, but it used to be constant.  Another trick I've learned just this year [finally!]:  If a serious bout of severe itching comes on, it means I am getting dehydrated.  If I drink a large glass of water, the itching stops after about 30 minutes.  So, I use Aspercreme and hydration with good results. 

That's such positive news Charlie in bleak circumstances!!!

I do drink a l;ot of water, but never thought to drink some during severe itching.

Thanks again, I'll certainly be trying out your remedies.

Catherine

Charlie, I am finding the lidocaine cream in my armpit causes extra irritation because of the rubbing in that area. The other arm does not do that. I want to try the capasian cream there, but the instructions say not to use it on damaged skin. I am off all creams in the armpit for now and taking codine for the pain until it heals. Then I will try capasian on that area. The strongest I found came in a roll-on like applicator. I suspect the base for the cream they use causes the irritation, not the lidocaine itself. I will post again after I try it awhile.

I'm not sure if this was posted before, but my skin is sensitive to things going across it. Things pressing on it do not hurt. So instead of wearing loose clothing as some are, I actually wear things that are really tight, so they don't move around and stay put instead. The trick is getting them so they cover the entire area.

I can relate to you cause I have pain in the same area.  I find also I can not put cream of any kind in the armpit area.  I totally avoid that.  At nite I put the lidocream around that area but not where skin touches skin.  I made a little silk pillow that I tuck in my armpit to sleep.  I have mastered the way I sleep without moving plus a Tylenol pm and temazapan and I sleep well. Amazing what we do to fight thus pain!  Also I agree that something tight over the most painful spots helps.  I have tried going bare and surprisingly even the air movement sets it off .  Don't know if this is helpful but I wish you luck.  Like me I will try anything!  I gave up on pain prescription as they don't work.

I also avoid clothing that moves, but find that constant pressure is not so painful. If you try capsaicin, try it in a small area first. It set off severe itching for me, but it does help some people. 

Aspercreme may not cause the irritation where skin rubs. Let us know what works best. 

I have tried the capsaicin but found it caused me great distress (severe burning sensation on area where I put it and only a very small amount) so did not continue.

agree w the opiod warning as you can see fr most posts on here they do not really work on phn you stated "oxygen", but Im afraid you mean "oxycodone". Taking this may "feel" like it helps but it is most likely the euphoric effect. Even some THC (medical marijuana) could provide a similar effect without the risk of addiction

Effexor is a great medication but has a short half life meaning you must never forget it or tge side effects of withdrawl are awful

So just be careful. A good approach is trying one thing at a time. THen you know what helps

Lisa

Caseysue

I now prefer Aspercreme with Lidocaine in the no-touch spray can. An occasional use of the Aspercreme cream when the skin is feeling dry instead.