Postherpetic Neuralgia (Shingles): Any successful treatment?

I am new to this group and this is my first post. I have had TN for 3 years on the entire left side my face and head..even into my mouth and nasal passages. this was left to me by shingles. I have had 2 nerve blocks, pain stimulator in my spine, gabapentin, pregabalin, duloxetine, oxycontin 10 (sometimes takes the edge off my pain) vitamins (all B). Nerve remedies or other over counter, atlas orthogonal chiropractor, now thinking about acupuncture. I also use a lotion that a doctor prescribed for me. It is filled by a pharmacy that puts it together but it needs a prescription. It contains, lidocaine, ketamine, and some other pain killers. If I did not have this I would have killed myself! not kidding! It is the only thing that will ease the pain somewhat. I will be glad to give you the pharmacy name, but you must get a prescription first.
I'm sure pain management knows of this. This is the only thing I can go to in the middle of the night. please take care!

I have tried about everything I have ever heard of. If only I had all the money that my insurance has spent. It also has cost me a fortune, and has made me hermit who wants to die sooner than later. I have it on the entire left side of my head and face and into my mouth and nose. have had it for 3 years. I read something on the Mayo site about an operation thru the skull that relieves the nerve from pressure. oDp you know anyone who has had this. the info says it is the only thing that cures this

For me it worked for 9 months. Now, suddenly I have a bad relapse. I did Botox every 12 weeks. I tried gama knife, twice, glicol rizotomy, twice and MVD. If anything, my pain level increased after each procedure. I cannot tell for sure yet if the 9 months of pain relief were because of Botox, but I am inclined to say so. I use oxcarbamazepin to keep the pain manageable, sometimes even 4200 mg per day. They recommend max 2400 per day.

Having TN, does anybody have icy cold feet right before a massive pain attack?

My life changed in Jan. 2017. What began as an awful headache, accompanied by eye pain, was misdiagnosed as a migraine. After a CT scan and a prescription for Imitrex, I was told to go to a neurologist if it didn’t help. It only got worse. Not knowing a neurologist, my husband took me to the ER. Unfortunately, it was misdiagnosed again, this time as trigeminal neuralgia. Now given a prescription for Tegretol, I was sent home. The headache and eye pain only accelerated and now I could add a very upset stomach to the mix. Back to the ER. An old doctor declared “It’s just shingles”, prescribed antivirals (though I was now nearly 4 days into this) and sent me home…again. While in the ER, I was put on a morphine IV to control the pain and bring down my blood pressure, but as soon as the diagnosis was given, I was literally unplugged and sent on my way. It was only getting worse. The paramedic team instructed us to go directly to the ER. I was 69 and had gotten the shingles shot almost 5 years prior. I have since gotten the 2-part Shingrix shot.
My routine is one of 400mg Gabapentin: 8am, 2pm, 8pm. It has never eliminated the pain, rather turns down the volume a bit. Lyrica has been tried a couple times, but it wasn’t an improvement and simply offered more possible side effects. Since the shingles involves the upper right quadrant of my head and my right eye, it involves the trigeminal nerve….so Tegretol was tried, with the Gabapentin, but also proved useless. Nortriptyline (an anti-depressant) was also added for several months. Also Duloxetine. They didn’t help the pain, but I guess I felt happier about it! A couple years after the onset, I woke with one pupil teeny tiny and the other so large it obliterated the color of my eye. Simultaneously, my tongue was very swollen (very difficult speaking) and my mouth felt “on fire”. A quick trip to our eye clinic resulted in a 3 hourlong MRI to rule out a blockage in a blood vessel. Shortly after my doctor contacted Mayo Clinic, they called and set up appointments for me to visit their neurology dept. More tests and doctors later, I was given pain blocker shots in my forehead and back of my head. The other goofy things going on are called Horner Syndrome and Burning Mouth Syndrome….and (you guessed it)..no know cause or cure yet. Unfortunately the pain blockers wore off quickly. The nearby hospital’s pain specialist did a second round and they did no good at all. I have also undergone 3 treatments of electrically-assisted acupuncture…not fun & no help!
I know, ENOUGH!ENOUGH! I tell myself “Everybody gets Something!”
Bedtime protocol: slather forehead with Aspercreme with Lidocaine, spray affected part of head with Aloe Vera, and (like a very old version of The Princess and the Pea)….Sleep on 2 pillows with a towel on top & 2 ice packs on top of that. I change them for cold ones and take a couple extra strength Tylenol about 3am.
Always Always wear a hat outside….winter or summer.
Eat healthy as you can (alcohol & French fries will make you miserable)

Many people are now getting osteopaths as their primary doctor now that insurance companies are allowing that, and are getting lots of benefits on better diagnosis and treatments. Less drug solutions, more healing.

@johnbishop

@ruthec
I just stumbled across this support group and feel encouraged just knowing you are out there. I’m an 82 yr old woman and had shingles in early September. Terribly painful and turned into PHN. Otherwise I’m in good health although have had various illnesses as I’ve aged. The PHN is across my shoulder blade area, armpit and across upper chest. Generally a burning pain with spikes of stabbing pain. I’m currently on gabapentin 600 mg and Tylenol. I was tried on supplemental Nortriptyline and also Tylenol with codeine. Both had unpleasant side effects so stopped. Can’t take Advil because on an anticoagulant. I’m feeling very discouraged as I realize this could continue such a long time! I look fine and people don’t realize how hard chronic pain is. I’m wondering how much gabapentin others have found helpful. When I increased my dose, I felt light headed and unsteady. Help?

@ruthec
Hi, I had a very bad case of Shingles at the end of April 2024. It settled into the areas where I had had previous surgery: right middle back, right side under arm and under right breast to middle of stomach. I now have PHN. I take Gabapentin 300mg 3x day lidocaine patches as needed. Sometimes a Tramadol. I find exercise and yoga to be my best friends. I get a massage quite often. At first I couldn’t let anything or anyone touch me, but it’s tolerable now. I am going to try physical therapy soon. You might ask your doctor to switch to Lyrica it sometimes works better than gabapentin. Weather affects mine.
I’m 73 years old in good health. I try to keep optimistic, but it is a really tough sometimes. I know what you are going through. I just keep on walking, exercising and yoga these things keep my sprits up.

Welcome @ruthec, I'm happy to see that you have already connected with @layla123 and received some tips on how to manage the shingles related pain. You might also find it helpful to scan through other discussions on managing gabapentin side effects. Here's a search link that lists the different discussions - https://connect.mayoclinic.org/search/discussions/.