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Postherpetic Neuralgia (Shingles) nerve damage

Posted by oran baughn @oranbaughn, Feb 27, 2012

Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp (8 years) has anyone had any sucessful treatment other than drugs

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Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 7, 2018

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)?

REPLY
barbarn | @barbarn | Aug 7, 2018
In reply to @oranbaughn "I never did receive a worthwhile reply to my shingle problem. it has now been almost..." + (show)
@oranbaughn

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

Jump to this post

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???

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 7, 2018
In reply to @sjsmall5286 "I am a 55 year old female and I am just getting over shingles, I have/had..." + (show)
@sjsmall5286

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?

Jump to this post

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?

REPLY
1 reply
sjsmall5286 | @sjsmall5286 | Aug 8, 2018
In reply to @sjsmall5286 "I am a 55 year old female and I am just getting over shingles, I have/had..." + (show)
@sjsmall5286

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?

Jump to this post

Sorry, I have to learn to leave a stress free life. I dont take meds for stress.Thanks for the information.

REPLY
sjsmall5286 | @sjsmall5286 | Aug 8, 2018
In reply to @oranbaughn "I never did receive a worthwhile reply to my shingle problem. it has now been almost..." + (show)
@oranbaughn

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

Jump to this post

Please be careful of those Free Trial sites for hemp Oil, Alot of them are rip offs

REPLY
sjsmall5286 | @sjsmall5286 | Aug 8, 2018
In reply to @sjsmall5286 "I am a 55 year old female and I am just getting over shingles, I have/had..." + (show)
@sjsmall5286

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?

Jump to this post

I think I have trigeminal neuralgia. Anyone else have this?

REPLY
1977lizzy | @1977lizzy | Aug 9, 2018
In reply to @oranbaughn "I never did receive a worthwhile reply to my shingle problem. it has now been almost..." + (show)
@oranbaughn

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

Jump to this post

He said it would make problem much worse. I don't use anything IN my eye. I, too, have the worst pain/itching at inner corner of eye. The cream is rubbed on the top of skin starting at inner corner of eye, across eyebrow and forehead. That's where top branche of the trigeminal nerve is located. Before prescribing the compounded cream, my anesthesiologist/pain specialist injected lidocaine to determine exactly what nerve are affected. I got total relief from injection until it wore off. So he had the cream made at a compounding pharmacy that I can use 4x daily if I need to. It calms the trigeminal nerve.

REPLY
1977lizzy | @1977lizzy | Aug 9, 2018
In reply to @sjsmall5286 "I am a 55 year old female and I am just getting over shingles, I have/had..." + (show)
@sjsmall5286

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?

Jump to this post

I take Lexapro once daily for stress. See my post about the compounded cream also. Many pharmacies do compounding for humans and pets. I keep the large gel first aid cold packs in my freezer. Wrapped in a dish towel and placed on my scalp or eye area helps me sleep if things get really bad.

REPLY
Ron Rubenzer | @user_cha272278 | Aug 9, 2018
In reply to @sjsmall5286 "I am a 55 year old female and I am just getting over shingles, I have/had..." + (show)
@sjsmall5286

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?

Jump to this post

Believe it or not, stress aggravates some skin conditions. I had shingles. When I was stressing out, my shingles really acted up. The trick is to learn how to relax before your shingles start acting up.

I would see one of the many fine experts you have on learning how to relax, under your control. The more you relax the better you will feel. I guarantee you will heal from this. Have hope. Dr Ron

REPLY
oran baughn | @oranbaughn | Aug 9, 2018
In reply to @oranbaughn "I never did receive a worthwhile reply to my shingle problem. it has now been almost..." + (show)
@oranbaughn

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

Jump to this post

Your cream sounds like something I might be able to use. I would go to a doctor and ask for the cream but since yours was compounded, I would need to know what to ask for. Do you know the ingredients and the amounts of each component. If you do please furnish them to me and i will see if i can get a doctor here to have them compounded for me. This is the best thing that i have heard of since i have developed shingles and PHN. Thank you for the information. .

REPLY
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