Information needed

Hello Hayleyjz:

Very sorry to hear about your Mom - I am sure knowing how much you care does help.  I have tried everything - drugs, various types of other interventions, neurostimulator etc and like with your Mom nothing helped.  Time - a lot of it - 10 years does seem to help but the pain is still there.  The only treatment (outside of opioids which have their own problem and lose their effectiveness over time)I found that has provided relief is cyrogenics - liquid nitrogen application to the area.  I found a paper and corresponded with the physician on the net.  It has helped but unfortunately I did not get permanent relief as some of her patients did.  I can't give you the website here but google calandria and cryoanalgesia and you will see the paper.  A dermatologist or doctor can do it - no different than the equipment for wart removal.  However the biological plausability is not clear and many will not want to do.  However it is a published sound paper in a medical journal.  Wishing your mom well.  jim

Hi Hayleylz

I can recommend a topical cream that I have found to be quite effective in giving relief from PHN pain.

My treatment removes most of the pain and allows normal life to continue unhindered.

There is no cure for this problem, so us sufferers have to manage the problem in the best way we can.

The mixture I discovered is as follows:

250 grams of Invite Vitamin E Cream (does not form a skin with continued use).

Two 5 gram tubes of Aciclovir Cold Sore Cream.(for a virus related to shingles).

65 grams of Dencorub Heat Gel (contains 26 percent salicylate & 7 percent menthol).

Mix thoroughly, and apply sparingly to the affected area. This quantity should last two to four months, depending on the frequency of application, so it is not expensive.

I have now been a sufferer from PHN for two and a half years and find twice daily application to be adequate to relieve most of the pain, so I do not need analgesics for further relief.

Try this mixture to relieve pain.

Kind regards, Ray.

 

I don't want to concern you, but this PHN has no easy solution. I manage by pain killers, either gabapenten, (neuratin) I am not a doctor but have had pain for 5 years and have been managing it.  

If you find a solution let me know.

Hi Hayleyjz,

I've had PHN for 27 years now, in eye, forehead and scalp. I also worked as a clinical psychologist with chronic pain patients for many years. In my opinion, opiates are a dangerous way to go. Once people are on them they tend to reject all non-opiate solutions, while still reporting lots of pain with opiates. Yeah, that makes no sense until you understand the process of addiction. 

There really are things that do help, and some have no significant side effects. Two examples lots of us here have found are Aspercreme and lidocaine gel. BUT, the person trying them has to be ready to accept partial improvement. Many people continue forever looking for a magic "cure," and none exist that I know of. 

The very best treatment for chronic pain is a combination of pain management skills (often learned in a pain management program) and cognitive behavior therapy (CBT). I've never, in 40 years of practice, seen a PHN patient with good control of chronic pain from opiates. But I've seen some of them totally disabled by opiates.  

Hi Hayleyjz,

Sorry to hear your Mum has PHN. I have been living with it for 13 years and it has now morphed into it's own, more widespread, neuropathic pain condition as it affected my spinal nerves.

I'm on lyrica (pregabalin), which has really helped me with the pain exacerbated by air movement. I also live in heat gen layers all year round to help with this. I'm also on duloxetine (lower dose). I use co-codamol for acute breakthroughs, but not very often. I am badly affected by cold temperatures but haven't found anything to help with this.

I manage to work full-time thanks to support from managers and occupational health.

I wish your mum lots of luck.

Greetings Hayleyjz,

?We are all different but I think most of us on this forum can sympathise with both you and your mom knowing a little about the consequences of PHN. I had shingles on my head and around one eye way back in 1984. initially recurrence of the pain was minor but over the years it has progressivly got much worse. Normal pain killers are useless. Creams helped initially but now Gabapentine seems to be the only medication which helps - patially.

 

?The most helpful thing I can say is that a postive approach, refusung to let PHN dictate live's patern is the most successful thing I have discovered. Try to get on with normal life despite the pain, try to get lost in other things, work, domestic chores, hobbies, whatever. Even when pain is at its worst if I get out walking, birdwatching, etc., I can loose the pain in other things.

BUT, and laugh if you wish for even laughing helps. I always sleep with a wooly night cap on. I never go out of the house without a cap on, and no my name it not Andy Cap!  My pain has gradually spread over much of my scalp and I do find that protecting it from the sun, heat, cold, draughts, etc., really helps - at 83 my hair is too thin to offer any protection.

?What has not been mentioned on this forum, the pain comes sporadically. I can go for several months with very little pain. Then it hits me and can persists for many weeks. So make the most of the good times.

Sorry for rambling on, but other folks experiences can sometimes help.

?Cheers Artman

 

Dear Haley I've had PHN for nearly 2 years. It's in the area of the right side of my head and causes headaches all the time. Some surface scratching but not serious. On 25 July this year I had the Pulsed Radio Frequeny treatment (PRF) and the headaches have gone - 3 weeks already. It's not a permanent solution, I will have to go back again, but the doc says the pain will be reduced sightly. So far so good, let's see how effective it is. There's also the Radiofrequency ablation (or RFA) treatment which is the same thing but the nerve is destroyed, a bit more radical. In your mom's case these treatments are worth a try. Start with PRF see how that goes, then go for RFA.

Hi Hayley, I read that there was research that laser light therapy was used to treat phn pain with positive results. However I have been unable to find any phn pain sufferers commenting about positive results with laser therapy. Having a family member with phn pain I was wondering if you can provide any helpful positive or negative info on laser therapy for phn pain. Any info you provide would be greatly appreciated.