PHN-life and death

Thanks for the positive feedback. I haven't reached the end of my rope and will continue to look for ways to live with PHN as well as encouraging others. It is a tough row to hoe for PHN sufferers but one that needs addressing in forums like 'patient'. I think it's a solice in numbers thing.

r.oka: I am thinking about getting my father to try out capsaicin-cream, I have sent him the information, not sure if he is going to go for it or not though.

Capssaicin is used in different ways in relation to PHN, most know the patches they sometimes use. This has to be applied by a doctor (with masks and breathing-protection) and is supposedly capable ot numbing the pain for about 3 months at a time.

This is pretty radical.

However there is a cream-variant that is less strong and that patients can apply themselves. ( se http://www.mayoclinic.org/drugs-supplements/capsaicin-topical-route/description/drg-20062561 for various names and brands if you want to talk to your doctor about it).

The thought here is, that you apply 3-4 times a day and over time deplete the nerve-endings from a substance (p-substance??), so that the pain-signals cannot be sent to the brain. Initially, the cream will probably cause a bit of pain and stinging, but this should start subsiding after a few days to 2 weeks. After 3 weeks, the pain-releaving effect should start becoming noticable.

I have read various clinical tests that seem to point toward an increasing pain-rleaving effect, as the patients keep using it for several months.

I am not sure if it helps if you have the itching-variant, it seems to be more geared towards the pain-issue.

It's extremely important that one keep applying this cream 3-4 times daily, beause if you stop, the p-substane levels will get back to normal pretty quickly and you need to start from scratch again.

Of all the things I've seen around treating the pain, capsaicin seem to be one of the better options, it is well suited when you don't have it near the face/eyes. (do not get it into your mouth or eyes).

There is no treatment of the damaged nerve-endings as of yet (EMA401 and similar treatments seem to be a few years away still ).

I am not certain about the exact numbers, here is a link to one such clinical trial of capsaicin-cream: https://www.ncbi.nlm.nih.gov/pubmed/1779253

I know it's not very uplifting that you need tio cause pain to releave pain, with no certainties of the results, but to give it 2-4 weeks and see, perhaps an option...?

(sorry for any spelling-mistakes, it's not my native language and for some reason, the spell-checker in my browser doesn't work here).

Please note that the study I linked to, was for 0.025% cream.

The cream I see available in my country is 0.075%, which is stronger.

Here is an extract from a study on the 0.075% cream:

https://www.ncbi.nlm.nih.gov/pubmed/8364943 the trial is longer term, double-blind etc, to rule out placebo and unrelated variables.

As with anything, this doesn't work for everyone, and if it work, it doesn't work the same for everyone, but in general, the study shows that it does have some clinically shown effects on the pain, so it can be worth looking into.

(easy for me to say, incredibly hard to do for those affected, I would assume).

I have tried over-the-counter capsaicin cream but my skin is so sensitive I cannot tolerate the burning. When I'm having a particularly bad night I use a large ice gel pack which provides relief. I also use lidocaine patches or gel. The drugs help but the side effects are horrific. As I stated in another post Diazepam, generic for Valium, helps a great deal with pain but I don't recommend it because it is highly addictive and unhealthy. I also use Gabapentin and opiates. I have titrated down on the opiates because of their addictive nature but I can't tolerate the pain! My battle is seven years long but somehow I've managed to stay alive😢

Sorry to hear.

It's supposed to be less hurtful after a few days to a couple of weeks, before it actually starts to work properly.

How long did you try it for?

Do you know the strenght you tried?

Here, we can only get the cream (0.075% ) trough a prescription.

Some tips I did found regarding this, on a Irish health site, was that you can experience most pain during use if:

- You put on too much cream at a time.

- You use the cream right after or right before a varm bath.

- If you put the cream on less than 3-4 times a day.

I have found information that does say that some patients simply experience the side-effects (pain, burning-sensation) to be intolerable and have to abort using it, so I understand that it's no cakewalk "just trying it out" either.

I have used a capsaicin topical at .1% strength available over the counter here in the U.S.A. It was used during the first year of my five with PHN when the scarring was still fresh. While I could handle the burning felt on the skin, it was the damaged nerves which went into a frenzy, that stopped me from continued use. Since then the scarring has faded and it may be worth another try at a less liberal application 3-4 times per day. I'll give it a week. This may give it time to deaden the impulses sent to the brains pain receptors. I'll post my results. Thanks

Doc, I failed to mention that I have scarring from surgeries in the areas of the nerve damage which heightens the sensitivity and pain. I can assure you I am not one of those whiny individuals but rather what I would deem a tough woman who's been through some painful and difficult health issues in the 66+ years of earth habitation but with the incessant pain of PHN and no relief in sight it is beginning to wear me down but will continue to search for a new means to an end.🤦🏼???

Hello and thank you for your reply. It was not my intention to insinuate anything, I wanted to check out of interest, to see if the procedure or usage was wrong in any way, and hear about your experience.

My father has similar issues, PHN on the left side, where he was, off-course as faith would have it, operated for cacerous cells in the lung, causing pain and issues.

Crossing fingers that you will find something that helps you better.

I found the capsaicin unbearable. Whereas with the Aspercreme with 4% Lidocaine cooling.

I only use the Aspercreme and the lidocaine gel. An ice pack is very helpful as well.

where are you finding the Lidocaine gel?

I find it at my local Walgreens drugstore. There's a vast variety of creams and gels to include patches.

tks. I will check it out.

We are fortunate to have this forum to share ideas and products to assist us in coping with this horrific condition. Those around us have no idea of the suffering we endure every hour of every day so having our friends on this forum helps us cope emotionally knowing that we are no longer alone. I am very grateful. We have no choice but to continue to try and find a way to eliminate our suffering.