Posted , 46 users are following.
If anyone has found things that help, please share them. I know everyone wants to talk about their pain, which is all I'm finding on here, which I totally understand. But Please if anyone has found any little things that help please share.
5 likes, 125 replies
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docmartin66 deblalnza
Edited
Well, the drug EMA401 has showned to have an effect with PHN.
I am a little uncertain about the status of the development of this drug, but as far as I can gather from the wikiperdia-article, they plan several more trials:
https://en.wikipedia.org/wiki/EMA401
I have no idea how these things work, but if I lived in the US, I would surely try and see if I could be a part of these trials.
Does anyone have more information on this?
I got hold of Aspercreme with 10% Salicylate (on eBay of all things) for my father who is a sufferer of this condition, but after 8 days of steady use, we have concluded that this does not work for him, unfortunately.
I did get him to get hold of 4% Lidocain (spray) and this works, he says it takes the "edge off", but he still has pains that runs "deeper" than the lidocain somehow, not sure what he means, but every trickle helps.
Lidocain has been proven in many studies to relieve pain with PHN, so IMO it should be one of the default suggestions for every patient. (patches, gel, spray or cream).
ruth57682 docmartin66
Posted
I had heard of this drug. Unfortunately the clinical trials for this were discontinued in 2015, I don't know why. Too bad!
docmartin66 ruth57682
Posted
Hello Ruth, thank you for your answer.
This put me on the path of googling and I actually found some information on this very site (who knew
)?
Seems like the original company was bought up, so that was the reason why the trials were halted.
There is some more information here and it seems that all is not lost after all
(fingers crossed!)
https://patient.info/forums/discuss/ema401-drug-trials-449501
ruth57682 docmartin66
Edited
Guess we'll just have to hope that eventually this new drug will go to trial. I am not optimistic that this will happen in my life time! At age 84 next month, I am learning to deal with this nightmare. I certainly don't enjoy the social and active life I once had but I am not depressed and do what I can. Fortunately I am not having to deal with other health issues as many my age do. I still find that distraction and hobbies, walks outdoors, a good movie once in a while really help. My daughter, who is in the medical field cannot believe there has been so little attention to nerve pain. I guess because it is not life threatening!
gail09802 docmartin66
Posted
Your father is right about the 4% lidocaine not penetrating deep enough. When I told my doctor that Lidocaine didn't work for me, he nodded his head in agreement and said that it doesn't penetrate deep enough to reach the inflamed nerves which cause the pain.
ED6072 gail09802
Posted
Gail,
Get your doc to write rx for 5% lidocaine topical. It has more penetration than spray. It almost acts as transdermal.
Tony2018 deblalnza
Edited
To all with PHN you have my sincere sympathy. My 89 yo mother has had phn pain going on 12 yrs now. The prescribed drugs just made her dizzy. Now she also has to deal with chemotherapy for a recently diagnosed cancer.
I am also trying to find relief for her. I recently found that patients with other kinds of pain are getting relief with laser therapy. Also known as cold laser therapy, low level laser therapy, and or level 4 laser therapy and or infrared laser therapy. The laser wavelength isn't the kind that burns but penetrates the skin and supposedly repairs damaged tissue.
I can't find any info with people using laser therapy for PHN. If anyone with PHN has tried laser therapy please reply with your results. Your response is very much appreciated.
docmartin66 Tony2018
Posted
Hello Tony, sorry the hear that your mother has to struggle with such things at this stage in her life, wishing that things will indeed work out regarding the cancer.
As for Laser and PHN, there have been clinical trials done, I found a very good summary/short review of several trials that have been done in the past on The National Center for Biotechnology Information, a site that I use often, to check if there are new trials/tests on treatments, or if any claimed treatments have any clinical trials listed or not.
The summary seem to indicate that laser does have some effect in some of the patients in the various trials done (I haven't read trough it all in detail). The summary is in the main column of text, the trials refereed are on the right column usually..
Crossing fingers that this post isn't censored,
Best wished to your mother, may she overcome this challenge and have a milder form of PHN.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4091693/
docmartin66
Posted
Tony2018 docmartin66
Posted
Rose098 deblalnza
Posted
Please do not be afraid of a high dose of Gabapentin! I wish I had heard that sooner. It gave me no recognizable side effects, I did not become addicted to it and I feel like it saved my life.
My PHN began a year and a half ago. It felt like I was electrocuted and tortured 24 h all day and i could not wear clothing. It was unbearable. I tried every kind of medication, including many natural things like acupuncture etc. Nothing seemed to even touch the pain. I went to three different doctors. Finally did my own research and showed my doctor research on large amounts of gabapentin. I had been taking a smaller dose which was not doing anything.. Finally he raised it to 600mg three times a day. That made a huge difference! While I still felt it some, it was actually manageable. I stayed on that high of a dose for about eight months. I don't like taking meds so slowly lowered it. My Doctor suggested applying Ketaprofen cream to ease the remaining occasional itch. This seemed to help a little, but one day I exposed the area to sun and my skin reacted and it caused me to have another shingles outbreak. So I went back on the higher does of Gabapentin. I stayed on that for about 4 months. About 5 months ago I weaned myself off of it completely. While I still have occasional moments of irritation, it is nothing a little itching and stretching cant fix, even without any medication at all. Please try a high does of Gabapentin.
darlene64285 deblalnza
Posted
I'm only 7 weeks into shingles recovery but so far what helps me is an ice pack and 4% OTC lidocaine cream. They help somewhat but that is better then nothing.
ED6072 deblalnza
Edited
deblalnza,
There are several things I have found to help subside the pain of PHN. I take 300mg of gabapentin, 3 x daily. I take it with 2 Aleve. I am not effected with any "dizziness". I do get relief from 4% lidocaine spray or 5% lidocaine topical, but requires Rx. Very surprising, get relief while in the saltwater swimming pool. According to CDC, taking the Shingrix vaccine will help, but saw no effect from my one dose. Will have my second vac in November and hope ithe PHN is healed.
scrouch deblalnza
Posted
I have given myself hundreds of B1/B12 injections, both intramuscular and subcutaneous. Not a dramatic improvement for me, but I don't take pain meds and I think it resolved a trigeminal neuralgia that started developing about a year ago. I have injected as much as twice daily if the symptoms were bad and as little as monthly otherwise. I now have sensation in the skin, but subcutaneously there is paraesthesia still. The main bother is an itch which responds somewhat to antihistamines. I see so many people with phn addicted to pain medication.
william83656 deblalnza
Posted
So can I just decide to up my Gabapentin from 1800mg to 3600mg or did those of you that are taking the high dosage get clearance from your GP? I find the Gaba wears off after two hours - and its not really helping a whole lot anyway. But I'm only taking 600 x 3x/day. I'm trying the lidocain patches tomorrow. I'm starting to get a bit mental about this thing