I have tried many medications/treatments... Topamax, Lyrica, Famvir, Carbatrol, Carbatrol + Baclofen, and acupuncture. None have worked. I have had PHN in my face for about a year now, and the only thing that sometimes helps is Percocet (makes me very, very ill). Any suggestions? I know I haven't tried tricyclic antidepressants or Neurontin yet.
Postherpetic Neuralgia - Has anyone had success with curing their PHN?
Question posted by AKParham on 8 Nov 2010
Last updated on 5 March 2023
13 Answers
btsbhall
22 Dec 2022
Since these messages are old now, I am interested in starting the conversation again. My mom is 84 years old and is suffering with PHN. She has tried hydrocodone and lidocaine patches, along with two Nerve ablation treatments that only made it worse. She has been going for laser treatments for 5-6 weeks now and it is not doing anything. Presently, she is scheduled to have a Medtronic Spinal Cord stimulator test run. Looking to share information on this awful condition. Thank you.
Zeila
4 March 2023
I, too, tried everything after my second shingles attack. Then I saw a show on acupuncture. O M G... some relief after first visit! After a couple more, PHN was completely gone. No, it does not hurt. Ultra-fine needles smaller than a hair. You just lay there in comfort with nice music playing for a few minutes. The only problem is insurance only covers acupuncture for certain areas. I pay out-of-pocket $80... well worth it.
CH1
18 March 2018
My husband has had shingles nerve damage on the side of his head with constant burning pain since 2015. Totally changed our life. He has been on several medications, had steroid injections into the nerve and had radiation on the nerve. No relief. One neurologist told him-if you think of a nerve being shaped like a tree with branches and leaves, his pain is generating from the leaves. So even cutting the nerve won't help.
Best medications have been amitryptilene (antidepressant) and narcotics. He could not tolerate gabapentin or Lyrica. Best treatment so far was having a Motor Cortex Stimulator implanted at University of CinCinnati. It runs a current that blocks the pain. He did great with that for a while but not working as well as it did.
I truly feel for everyone who battles to have some kind of life with this endless exhausting pain.
kywoman1961
28 Nov 2016
I have tried every thing that the doctors have suggested! Nothing at all has helped with my Postherpetic Neuraliga! I was wondering if anyone has tried cannabis oil for treating Postherpetic Neuraliga? I am desperate! The only thing that helps are frozen baby wipes or wet papertowels that are frozen. I have tried over 22 different treatments including epidurals and lidocaine patches and prescription creams and many Rx medications with out any relief! I have had this complication from the shingles for twenty weeks with no sigh of relief! I got the shingles 2 weeks before my shingles vaccine! See, I had AML which is a Blood and Bone Cancer 3 years ago. To live I had a Bone Marrow Transplant 2 and a half years ago. The transplant wipes out any immunizations I've ever had. So, I have to go to the onocologist every 4 months and receive 6 immunizations at a time.
I've been told the reason I got shingles is I have a compromised immune system due to Chemo and radiation! Anyway, I am desperate for relief! I wake up everyday and my right breast feels like I have hot lava thrown on it and my back shoulder itches and burns too! Please, if you have any suggestions for relief please let me know? I would greatly appreciate any suggestions. I thank you in advance. Angie from Kentucky.
SullysNana
22 Aug 2016
My husband has had PHN for approx. 3.5 years Mild rash but heavy duty nerve pain in his left butt cheek and down his leg. At this point has tried all of the drugs mentioned here. Cannot take Lyric or Gab. It affects his mood seriously. At this point he has gone off of Norco which gave him some relief but took away all interest in most things. After going thru a rough withdrawal to get off of the pain meds we are finding he is miserable with pain now and may have to go back to the Norco. Was hoping to find some remedy here but it looks like everyone is in the same boat. He sometimes gets a little relief from the prescription 5% Lidocaine patches--but it only takes the edge off and not always.
Male50
22 Aug 2016
It's an absolute shame that modern medicine can leave us so hopeless with this illness. I often wonder about the accuracy of the diagnosis as well. Never had the rash, but I see some are in the same boat. Depressing to consider being on pain meds the rest of, surely shortened lifespan.
Deeholman
4 Sep 2016
Try ice packs for the pain. They do work for a while as they numb the pain but relief of any kind for any amount of time is worth a try. alternate with a hot pad. 10 to 15 mins on then off.
SullysNana
28 Nov 2016
Update on my post above. My husband is back on the Norco, the pain was crippling. He describes it as being burned. The Norco will give him minimal relief for 3 hours at a time and at this point is on 8 Norco per day (down from 12). So far we have found nothing that give significant relief and like others here he describes his pain on most days as a 8, flaring up to 10+ some days.
Male50
10 Aug 2016
3 and a half years no relief. Never had shingles myself either. It's terrible. I work as a financial advisor, and some days I wonder why I even try.
DawnieB
9 Aug 2016
I see that this discussion is 4 years old and am wondering if any of you have found success during that time? I am almost 5 years in to this lovely adventure after having Shingles with no rash so I didn't get a chance to treat it. I am taking Gabapentin and Topomax and tolerate most days but sure would love to go through some days without stabbing pains in my side again one day. A girl can dream right??
Idontbelieveit
16 Aug 2016
I had scalp shingles without any rash but developed terrible phn after... tried acupunture but it didn't work for me. Finally took Lyrica which was miraculous... 75 mpg twice a day. I have no pain and no side effects. However, I've been taking it for 10 years and would like to know if the pain ever disappears so I can discontinue ... It's very expensive. The only way I can find out is to stop the medication and if the pain comes back, it takes three weeks of Lyrica to stop it. I'd like to know if the pain ever goes away?
margieann
14 Nov 2012
In 1996 I developed a case of shingles, which left me with postherpetic neuralgia. My shingles was in the center of my chest through to my back just to the left of my spine, crescent shaped rash front and back and the most severe pain. I thought before the rash that it was my heart, few days later the rash appeared. Since then, in 2008 I underwent a Cervical Laminectomy for Syringomyelia in my spinal cord at levels C3 - T2. This left me with a good bit of nerve damage, about 60% of my body, mostly left side and midsection, down left leg to my foot. I have said all this to say that I was referred to a concerned and caring pain doctor at a pain center. I have been on Lyrica for the nerve pain and Cymbalta for fibromyalgia pain. Now I take Gabapentin and also Pramipexole for restless legs. I can sympathize with anyone who suffers with pain of any kind.
Recently my doctor at the center suggested that I do a "Spinal Cord Stimulator" trial for 3 days. That was the most pain free I have been for years.
I am now awaiting approval from my insurance to have the SCS implanted. Hopefully this will be soon and am looking forward to giving up some of my pain meds. I was able to control my pain while on the trial stimulator. Do some research on Spinal Cord Stimulator, ask your doctor about an SCS. This procedure is reversible. If I am approved and have an SCS implanted I will be glad to report my results.
I hope you have found some relief from your pain, if not research a stimulator. Sincerely, margieann
TangoAnn
1 July 2012
AK, I am wondering if you have had any success with treatments since your post in 2010. Have been dealing with PHN in the mid-section for 17 months - have pretty much tried it all . . .
My best to you -
Alexandera
2 July 2012
I am currently taking 1500 mg of Neurtontin daily, as well as 60 mg of Cymbalta. I had also been taking Elavil, but found I could not tolerate it, i.e. I could not function cognitively at work. While the pain has increased since stopping the Elavil, at least my head is clear. But bottom line is the pain is still there 24/7 at a level of 5 to 8. I'm at a loss as to what else to do at this point. It's been 3 years.
AKParham
16 July 2012
I have tried more acupuncture, Indomethacin (made my pain MUCH worse!), stellate ganglion blocks, steroid occipital blocks... I'm not sure if this is still PHN or some kind of facial neuralgia. Right now I am doing Cognitive Behavioral Therapy. I have learned how to breathe to relax while I'm having intense pain, focus on other things. Before trying this, I wouldn't have thought it was possible. I'm also on 200mg of Lamotrigine a day. One or both of these things are helping!
Alexandera
16 July 2012
Where did you go for your Cognitive Behavioral Therapy? A pain clinic? It sounds very interesting. I am glad you are getting some relief.
sunshine1109
14 Sep 2012
Alexandera, have you had any luck in treating your pain, Im on my 3rd year and Im about to lose my mind... Just wondering if you have had any success..sunshine
roxbjane
1 June 2012
How many acupuncture treatments did it take to notice relief? Even the beginning of relief???
Sweetrose
29 Nov 2012
Hi roxbjane. I could NOT post on your question re your elederly mother's 16 month ordeal with post hepartic neuralgia [PHN] - so I am POSTING HERE. My mother is 81 and has had PHN for 12 months. And yes, we have tried everything!!! [incl. capsacain], gabapentin, tramadol, oxycodone, and more, plus ALL topical ointments to help her. Nothing worked well, or had extreme side effects]. She is now trying Lyrica [pregablin] - and says the pain has eased enough for her to do [some] things around the house, and pulling weeds in her garden!!! - I think it takes one to two weeks to feel better - AND dosage can be increased, depending on your mum's size and health. [My mum has always been very small and thin.] But she has always been a 'tiger' to physically 'do' things, inspite of living with life-long pain:- [polio at 8 yrs; osteoporosis; broken nearly every bone; hip replacement; crushed back vertebrae etc. etc.
but nothing could ever stop her!!! - EXCEPT the awful Shingles, and worse - the PHN!! which really took their toll both physically and mentally. I don't know if pregabalin will help your mum, but it's worth a try. P.S. I hope THIS POST is irrelevant and your mum is ALREADY back to normal ♥♥♥ Pat [user name: Sweetrose - Australia]
A_mRCarmichael
7 May 2012
acupuncture has brought great relief. In fact has brought the most relief over time. non-traditional therapies. additional courses of acyclovir due to return of rash has helped. for traditional therapies prescription strength advil can help, as can tramadol however I prefer to avoid tramadol. Good sleep habits. Good nerve support: Hyland's Nerve Tonic (available Rite Aid, CVS, Vitamin Shoppe, etc). Having fun and relaxation is important. Good sleep habits. Light exercise (which can trigger it) can also help but do it in support mode - do not over do. Vitamin support - multi's, B's, C, calcium, iron and supplements (Omega's). Good nutrition. Dehumidifying can help if living in damp climate (I do). Get plenty of rest and take it easy. Also talking with someone who has been through any kind of severe physical pain can help in discharging stress and can learn from them what worked for them.
I would like to try "silverdyne" which is the slang term for burn medication (cream). Wonder if anyone else has tried that?
If one thing doesn't work try combo. If acupuncture is cost-prohibitive look for acupuncture community clinics (which I recommend) for cost-effective and professional treatment.
Junielle
22 Dec 2011
Hi, AK, You sound frustrated. I have PHN also (12 years) and feel for you, with your pain, your life going haywire, and the way pain patients are often made to feel these days by the very professionals trained to help!
I would recommend using the best sources you have, to get to the best possible pain doc. Incidentally, It is not safe to use acetaminophen (Tylenol) with opiates or alone, due to the liver toxicity. My current PHN treatment includes a treatment with 8% capsaisin patches - takes about 3 hours to prep the area with lidocaine cream, then placing the patches. So far, this treatment has calmed all the nerve endings in my left chest and all around to the thoracic spine. I am still taking the other meds: Oxycontin, sleep meds, Celexa and Neurontin, 100 mg. Benefit expected to last 90 days, after which, an expected treatment at the 3 month time.
After 12 years of persistent pain, level 7-8, disturbed sleep and buckets of misery, I have had RELIEF! Hope is crucial. I believe you will find relief.
Junielle
roxbjane
11 Jan 2012
My Mom's pain management specialist offered treatment with the Capsaicin patches, but had absolutely no feedback from other patients to share with us. She is 87 and was healthy as a horse until shingles at age 85 and has PHN in the right hip for 16 months. Do you base your success mostly on the Capsaicin? Is the treatment painful? Thanks for any advice...
angryfrank
1 April 2011
In my experience, none of the "neurological" drug benefits outweighed their significant side effects. I couldn't recall the breed of my dog when someone asked me when I was on Lyrica. Neurontin is very bad for your dental health care - very bad. And it's not as effective as Lyrica. Many people react badly to Percocet; I would get to a pain management specialist who can try another drug more suitable to you... for instance, many people with chronic PHN use Norco or Vicodin without the stomach trauma caused by Percocet. Everyone is different, but I would suggest trying Vicodin. And hypnotherapy can definitely help as well. Unfortunately, I've come across no "cure" after 8 years with a very severe case around my midsection. Best of luck to you. Get to a Pain Manager...
general PCP's are too inundated with misinformation on opiods and tend to promulgate the horror stories of addiction, which are very few cases when compared to those of us who need stronger medications and utilize them properly.
Take care,
Frank
Alexandera
25 Sep 2011
Frank,
Your answer really alarms me, particularly how long you have suffered with PHN. I have had it for 2.5 years on left side--from neck, front and back of shoulders, down arm to finger tips. It is actualy getting worse--I've had 3 days in a row at level 8 pain. I've tried lyrica (allergic to it), neurotin, elavil, cymbalta and tramadol. Just recently, 8 sessions of acupuncture. (Oh, and site injection and a nerve block.) A visit to a pain management clinic last week was thoroughly disheartening. Told me to add Vicodin to my routine when needed, and see my PCP for an anti-depressant or anti-anxiety medication as a supplement. I am not despressed or anxious--I'm in constant pain! Maybe I just need to find a better pain management clinic. Despite how I feel, I can't give up.
Deeholman
4 Sep 2016
Alexandria, I am 72 and have had shingles, PHN for more than 15 years. Some months are good and some not so good. If I get stressed really badly I can break out and have a shingles incident where I have the terrible pain with the skin feeling very sensitive to touch. I can have these for days on end. It is hard to control. I take Hycodone with tylenol, Vamvir, amtripoline, Gabapentin. When speaking to my Dr. She has recommended the Gabapentin as one of the best pain relievers for PHN. I take a very low dose, 200mg so If I need to she can help me up the dose which has helped me a lot. I also use a cream made with CBDs no THCs and it helps too. I have also found that vaping some cannabis at night before bedtime help me sleep. I do try to exercise but it is not easy to do this for me. I have lower back pain from a car accident as well as the site of my PHN pain which is in the upper back just under the shoulder blade on the right side. I use Aromatherapy too when possible.
and I make up creams made with peppermint, tea tree essential oil with a carrier oil like jojoba. I have also found that a hot pad can bring relief for short periods. My biggest pain relief comes from ice packs that I wrap in a dish towel and pace on the site while lying down. Hope some of this information can help you.
suzanne66
13 Dec 2010
There is no single treatment that relieves postherpetic neuralgia in all people. In many cases, it may take a combination of treatments to reduce the pain.
Antidepressants such as nortriptyline and amitriptyline affect key brain chemicals that play a role in both depression and how your body interprets pain.
Anti-seizure medications also can lessen the pain associated with postherpetic neuralgia. These medications stabilize abnormal electrical activity in your nervous system caused by injured nerves. Doctors may prescribe gabapentin (Neurontin), pregabalin (Lyrica) or another anticonvulsant to help control burning and pain.
They are worth trying.
All the best.
Related topics
carbatrol, famvir, lyrica, topamax, persisting pain, shingles, neuralgia, baclofen, postherpetic neuralgia
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