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

@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

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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.

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@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?

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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.

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@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?

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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

Liked by Lisa Lucier

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@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

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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. .

Liked by Lisa Lucier, barbarn

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@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?

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@sjsmall5286 You may wish to join members talking about trigeminal neuralgia in this discussion group:
– Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

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My compound was prescribed by anesthesiologist originally. Now my primary care doc orders it. It comes in a pump tube. The only breakdown I have is Keta/Gaba/Top/Mel/Lido/Prilo. If I can find the specific amounts, I will post. I had the strength increased after the first tube & it works well.

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Thank you for your reply. The amount for each ingredient will be very important. If you can possibly get that for me I will appreciate it. Thanks again.

Oran Baughn

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@1977lizzy

My compound was prescribed by anesthesiologist originally. Now my primary care doc orders it. It comes in a pump tube. The only breakdown I have is Keta/Gaba/Top/Mel/Lido/Prilo. If I can find the specific amounts, I will post. I had the strength increased after the first tube & it works well.

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Hi

I would also like to have "The amount for each ingredient will be very important"

Thanks

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@oranbaughn

Thank you for your reply. The amount for each ingredient will be very important. If you can possibly get that for me I will appreciate it. Thanks again.

Oran Baughn

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Hi, @oranbaughn – wondering how things are going with the postherpetic neuralgia?

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Looking for help with PHN

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Does spinal cord stimulation relieve PHN pain? I had a very mild case of shingles in 1999 but the discomfort continued for months after, just a feeling of a binding around my rib cage. (I can't wear anything tight around my back muscle area) After about ten months of this discomfort I saw that a local hospital advertised a trial treatment so I signed up. After the first set of injections on half of my back, I went from a discomfort level of 3 – 4 to a pain level of 7 – 8. I was assured that this was just temporary, so I agreed to go ahead with the injections on the other half of my back. That was almost ten years ago and my pain level has never decreased. I have tried all the drugs that two different neurologist have prescribed most of which just mad me "Looney". The only one that has helped at all is Lyrica, but at times that doesn't work either. The only blessed thing about this is I don't hurt when I am sleeping. My back feels like I have a severe sunburn, but the strange thing about it is, a heating pad is the only relief I can get. I don't have anyone to put the patches on my back and I'm not sure how much help they would be. Any advice would be appreciated. JoanLee

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@joanlee

Does spinal cord stimulation relieve PHN pain? I had a very mild case of shingles in 1999 but the discomfort continued for months after, just a feeling of a binding around my rib cage. (I can't wear anything tight around my back muscle area) After about ten months of this discomfort I saw that a local hospital advertised a trial treatment so I signed up. After the first set of injections on half of my back, I went from a discomfort level of 3 – 4 to a pain level of 7 – 8. I was assured that this was just temporary, so I agreed to go ahead with the injections on the other half of my back. That was almost ten years ago and my pain level has never decreased. I have tried all the drugs that two different neurologist have prescribed most of which just mad me "Looney". The only one that has helped at all is Lyrica, but at times that doesn't work either. The only blessed thing about this is I don't hurt when I am sleeping. My back feels like I have a severe sunburn, but the strange thing about it is, a heating pad is the only relief I can get. I don't have anyone to put the patches on my back and I'm not sure how much help they would be. Any advice would be appreciated. JoanLee

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Hello @joanlee, you may notice I moved you discussion and combined it with another one titled, "postherpetic neuralgia (shingles) nerve damage around eye, eyebrow, forehead & scalp." I did this so the members already discussing this topic would see your message and so that you could see the conversation that was already taking place. If you are replying by email, click VIEW & REPLY to see where your post is in the new discussion.

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To add to my old posted info, I've seen a new neurologist & increased my Gabapentin to 300mg morning & 600mg bedtime. Plus, the compounded topical cream on face. I tried acupuncture with no effect. After 9 years of this, drugs are only things that help and that is Not total relief.

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How effective is nerve ablation for postherpetic neuralgia?

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@nighthawk50

How effective is nerve ablation for postherpetic neuralgia?

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Hi, @nighthawk50 – welcome to Mayo Clinic Connect. You'll note I merged your post with this discussion, "Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp" so that you could meet other members talking about postherpetic neuralgia.

I had postherpetic neuralgia after shingles myself, and it was tough. I remember wondering if the itching would ever go away.

Please meet @1977lizzy @joanlee @sjsmall5286 @oranbaughn, as well as @johnbishop. I trust these members will have some helpful input for you on postherpetic neuralgia and on the effectiveness of neural ablation for this condition.

Here is some Mayo Clinic information on postherpetic neuralgia that may be of interest: https://www.mayoclinic.org/diseases-conditions/postherpetic-neuralgia/symptoms-causes/syc-20376588

Will you share a little of your story related to postherpetic neuralgia, @nighthawk50?

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