Mayo Clinic Connect
Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp (8 years) has anyone had any sucessful treatment other than drugs
I never did receive a worthwhile reply to my shingle problem. it has now been almost 14 1/2 years since i developed the PHN. it has not gotten any better or any worse in the last 10 years. It still hurts, stings, itches and burns 24/7, also it has blinded me in my left eye. (lot of infection and scarring of the cornea) As previously stated, I have tried every drug available, all they do is mask the pain on a temporary basis and make you goofy. if there is any kind of help out there, i sure could use help. The only new thing that I have heard, is the radio frequency ablation. That is a new one on me, if anyone has any experience or knowledge about this type treatment especially concerning the radio frequency ablation vs. PHN or any other treatment vs. shingles and PHN I would appreciate any information I can get. I would like to hear from any Doctor, Clinic or individual concerning any information about shingles and PHN. Thank to everyone. Oran Baughn
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Thank you for your comments. I have used gabapentin, as well as every other kind of med available and as I said they dulled the pain as long as i took them but they also made me goofy. As you might imagine, I cannot use any type creme in my eye and that is where most of my pain is located,right where your tear duct is situated. Did the neurosurgeon say why not to try radio frequency ablation. Do you know what it is suppose to do or what would happen if you did try it. If you have any info about that please let m e know.
Where do you put these drops and what do the suppose to do. Most of my problem is in and around my eye.
Liked by barbarn, marystefy
I had nerve block injections in the nerves that had the PHN. No drugs ever worked for me and I suffer from Chronic Shingles Outbreaks. I had 9 outbreaks in 3 years before Mayo’s Infectous Disease department put me on a daily regimen of 1600 mgs of Acyclovir when I was 30 years old. I had 3 Spinal Band breakouts before they repeatedly started attacking my 5th nerve and occipital nerve. I am too young for the vaccination although Mayo did help develop the vaccination & applied for an exception to my age; we weren’t successful. But I know how overwhelming PHN is, especially in the location you & I have experienced.
Liked by Lisa Lucier, marystefy
I am a 55 year old female and I am just getting over shingles, I have/had in my left eye area, My issue is I get a very hurtful burning, my eye waters & closes down, Its like my left side is having a seizure. It has me in tears for at least a minute , This happens to me about 4 times a day , ,
I am on Gabapentin 600 mg, But I can only take that at night because it knocks me out. I am also on oxycodone 30 mg every 4 hours .OTC meds also put me to sleep.
This happened to me while I was driving, I had to pull over till it passed. Is this happening to anyone else?
What can I do to stop this?
Thanks for the reply. I will keep everyone informed .
Liked by Lisa Lucier, Ron Rubenzer, marystefy
"I had a severe headache and no blisters until the fourth day." That is what happened to me, But my eye was just about closed. I went to the ER and was told I had shingles, The ER only gave me a Motrin & 1 antibiotic pill & told me to go to a eye DR. I made a appt that day to my Primary care DR, & he prescribed Doxycycline & Acyclovir.
The next day I went to a eye Dr and he checked my eyes and said it okay, But sometimes I have blurred vision & light sensitivity . I wear sunglasses 24/7
Liked by marystefy
" topical compounded cream" Can you tell me more about it?
I was told Stress is what brought this on. I have to learn to live a stress free life.
I am looking for recommendations for my wife's postherpetic neuralgia on her back. We recently relocated to the mid-south to be near our grandchildren. My wife has suffered terribly for nearly four years. Her medications (gabapentin, Lyrica, and various creams/ointments, opiates) have had nasty side effects and/or provided no relief. Would someone recommend a treatment or a good physician in the mid-south? Thank you.
Hi, @stephenluptak — welcome to Mayo Clinic Connect. I had postherpetic neuralgia myself following shingles, and it was indeed awful. I am so sorry to hear your wife has suffered terribly for nearly four years from this.
I merged your post with this discussion on postherpetic neuralgia that was started in 2012 and is still ongoing, so you can meet members like @menville @oranbaughn @barbarn @1977lizzy and @sjsmall5286 who've been talking about this topic this week, as well as other members. Though they have experienced postherpetic neuralgia manifesting in a number of ways and places on their bodies, I trust they will have some input to offer on treatment options for your wife's suffering on her back, despite her treatment with gabapentin, pregabalin (Lyrica), various creams/ointments and opiates. Hoping someone will also have a suggestion of a physician for her in the mid-South.
Also, here is some Mayo Clinic information on this condition that you might find useful: https://mayocl.in/2M3WJ2V.
@stephenluptak, would you and your wife have any suggestions of things you've found provide a little relief (e.g., activity/less activity, rest, foods)?
Liked by John, Volunteer Mentor, marystefy
take the drops orally – under tongue – or, with ice cream? Not sure these drops will help any eye problem – I was hoping they would help with restless leg and pain, but last night was the 2nd time I tried it, to no avail. I do take gabapentin also, and Requip for the restless leg. But have such a problem with balance – created by the drugs???
Liked by marystefy, sjsmall5286
Hi, @sjsmall5286 — @1977lizzy mentioned the topical cream contains lidocaine, gabapentin and several more drugs. Sounds like an anesthesiologist prescribed it. She may have more information on it, as well.
Here, https://bit.ly/2n1ILjD, the U.S. Food and Drug Administration (FDA) describes compounding: Drug compounding is often regarded as the process of combining, mixing, or altering ingredients to create a medication tailored to the needs of an individual patient. Compounding includes the combining of two or more drugs. Compounded drugs are not FDA-approved.
@1977lizzy — you also mentioned something about taking a stress medication. Would you provide more information on that and how that's working?
Sorry, I have to learn to leave a stress free life. I dont take meds for stress.Thanks for the information.
Liked by Lisa Lucier
Please be careful of those Free Trial sites for hemp Oil, Alot of them are rip offs
Liked by Colleen Young, Connect Director, barbarn
Have to read up on trigeminal neuralgia ?
I think I have trigeminal neuralgia. Anyone else have this?
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