PHN things that help

I have been battling the PHN since summer of 2008. I have tried so many meds...What works best for me is Lidocaine cream. I find the heat makes it worse. My breakout was left side navel to spine. I retired in May 2016. So I am able to dress casually as I can't wear anything tight around my waist. So house dresses are my friend. I rub the cream at night so I can get sleep. Thanks again in the morning so I can do some things around the house. I stay out of the sun, and dread the summers, which is difficult as I live in New Orleans...Good luck ....

I remember what it was like for me in the first year--Very difficult.  Got very depressed.  One thing to be aware of:  It is very common but dangerous to see things in black and white, when there are really shades of gray and colors in the PHN improvement world.  I used to think "nothing helps," but it was because I was looking for dramatic improvement.  When I decided to look for small improvements, I started feeling lots better.  You're already seeing help from lidocaine cream for sleep, and from optimism for mood. 

I used lidocaine for years, but found Salicilate cream to work a bit better.  But, I also used both for awhile.  You might try that and give it a good chance. 

I wrote earlier on using CBT for mood improvement.  Not sure if you read that.  It might have been on another thread on this site:  The one on depression and PHN. 

its been 4 years updates?

Kimberly,

Can you expand on the Spinal cord Stimulator implant nyou refer to please.

I've had PHN now for nearly 3 years and have tried everything.

(I have it on left side of forehead, eyebrow and scalp) I havnt heard of this form of treatment and am very  interested.

Thanks

Catherine

You are right about PHN in saying that "no matter what, some level of pain seems to be there."  The goal then becomes lessening pain rather than getting totally rid of it.  This goal is achievable, and well worth the effort.  Also, the goal of mood improvement.  My post just before this talks about both. 

Hi Catherine,

I have PHN in the exact same area as you, but right side.  I used to work with a doc who did spinal cord stimulator implants, and have seen many patients who had them in my work as a psychologist in a hospital setting and outpatient rehab settings. 

The surgery is not minor.  They implant a "stimulator," which is really a sophisticated TENS unit, under your skin, then run a wire from it inside the epidural space along the spinal cord, to the area where the particular problem sensory nerve leaves the spinal cord.  The idea is that the electrical impulses interfere with the pain signal.  Kimberly can give you her personal experience, as it sounds like she's had a pretty positive experience.  Most of the people I saw had very limited results.  Any time you do surgery near the spinal cord you risk spinal cord injury [even bumping it a bit can cause paralysis].  But, I actually never have seen a case of paralysis from that surgery. 

Have you tried Salicilate cream and lidocaine cream?   Those are the things that I hear good results about from most people on this site. 

Kenalog injections:  Gail's posts above talk about that.  She's the only one I've heard who has tried this, and I have never heard of it before, but she's getting good results.  I think her injections are within the skin, and therefore much less invasive than a surgery.  Should be less expensive too.  Something to check out. 

It works pretty well. My doctor said it can only work 50% of the time but better than nothing. My doctor is in charlotte NC. Hopefully you would have good insurance because not cheap. I do need hydrocodone at night sometimes. They will do a trial implant before a permanent to see if it will work.

What is E45?  Are you in the US?  Does this have another name?

As well as Ruth enquiring I also do not know what E45 is?

I desperately need something for chronic itch, I am in Sydney, Australia.

Catherine

E45  is a cheap cream extensively used and  available in the UK. It's basically for relieving dry, flaky, irritable skin. It's just an aqua  liquid parafin, glycerine based cream (or lotion).  Very good for ordinary skin problems but can't imagine it would do anything for really severy itching. 

I did look up E45.  It appears to be available on Amazon.  I think it may ship from U.K.  Not expensive.  You can also read reviews on Amazon.

thanks for the information. I think I will stick with the Aspercreme with 4% Lidocaine

The ONLY thing that works for me is the lidocaine 4% cream and I have tried everything.  Even got cannabis cream 91 mg CBD and that did nothing except make my skin red and worse!

I am sticking to what works best. After 11 yrs. I have tried so much.....

Catherine,

Don't remember if I've said this to you before in this thread, so please forgive me if I sound like a broken record.  I have severe itching from PHN, and Aspercreme works best for me.  Lidocaine gel also worked some, but I just use the Aspercreme now.  It has an anti-inflammatory in it [salicylate] , so I think the source of itching is inflammation in the nerves just under the skin.  Drinking extra water also prevents my worst itching symptoms.

I have upped my water intake. Fingers crossed.

My husband has 4% lidocaine patches (2 in his chest & one on his back) for 12 hours per day. He says they do give him some relief from the terrible pain, which he'said ad for over a year now. It'seems he only thing that has really helped.He also has capsicane cream after taking off the patches + high doses gabapentin, oxycodeine & ametriptaline. He tried 3 months of acupuncture,but the only thing that has really made any difference are the lidocaine patche's. I can only witness his pain and pray they soon find a cure for all of you who suffer so much.

I was on Gabapentin but after awhile it didn't do anything more than Tylenol . I have had it 11 yrs. For the most part the Aspercreme with 4% Lidocaine is the best topical. Other than that I have learned to try and live with it.

I also tried the patches.  They were by prescription and had 5% lidocaine.  Yes, they did help but they kept falling off and were expensive.  I find the 4% cream better for me even though it doesn't last long.  It really calms down the itch as well as the pain.

I used Lidoderm, which consists of patches containing lidocaine, years ago when my PHN was fairly new.  The patches helped, but they were expensive [$60.00 per large patch] and did not stick well.  Plus, my area includes my scalp, and patches and hair don't do well together.  So, I switched to lidocaine gel [I don't know what percent], which I thought worked just as well and cost about $10.00 per year. 

Hi there Charlie,

Yes you did mention Aspercreme but Im unable to get it here in Sydney, have tried pharmacies, no luck.

It's just the severe itching I experience most of the time and sensitivity, even a strand of hair on left side of forehead is a cause for great pain and itch. I can actually cope with the pain but it's the itch that causes me most distress.

Thanks for keeping in touch.

Hello. I did a checkup on this, as I wanted to get hold of this to my father. We live in Europe.

According to the pharmacist at one of the pharmacies in town, Aspecreme with 10% Salicylate is only sold in the US, Mexico and Canada, nowhere else.

It contains an Aspirin-derivate and in my own country, it's controlled/restricted somehow.

The pharmacist did explain that they can order things trough their supply-lines, but it needs to go trough a doctor and a prescrition, I am not sure how things work in Australia.

As for purchasing it yourself, they have it both on Amazon and other web-stores, but all of them were restricted to shipping to my own country. Therefore I ended up getting a pack of 5 from eBay, which worked very nicely. My father tried it, but it didn't work on him (he has severe pains though, no itching).

Try various sources online, shipping to Australia may be less strict.

Catherine,

The itch and pain sound familiar, it is the same for me.  A strand of hair brushing across the skin sets off severe pain. 

Do you have access to Amazon in Sydney?  It is available on Amazon.  Two types, the original [has salicylate] and "Aspercreme with lidocaine," which has lidocaine instead.  If you have Amazon, order the original.  There are other brands that have salicylate, such as Sportscreme, Myoflex, and others.  If you can't get Aspercreme, try googling "salicylate creams," and see what else comes up. 

Many thanks for this docmartin.

I also have tried to get it here in Sydney from a pharmacy, they were unfamiliar with it.

I've had a response from Charlie who has informed me about trying Amazon, which I'll do.

Catherine

E45 Anti Itch cream is in a tube very similar to toothpaste tube also it can be purchased at Boots the chemist or any reputable chemist in the U.K. If you live in any other country I would still expect you you would be able to buy it as it is a popular product 

Someone on this site recently said they were able to get Aspercreme through eBay.  So, if amazon doesn't offer it, you might look there.