Postherpetic Neuralgia

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I had Shingles in late May, took Valtrex for 3 weeks. The rash/blister went away in early June but the pain is still with me to date.  Doctor suggested to take Nortriptyline for 2,3 weeks with the hope that the pain will be much less or goes away completely. I will try that but does anyone have any suggestion on dieting and exercise  to ease the pain.

Thanks,

Al

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  • Posted

    Dear Al,

    POST HERPETIC NEURALGIA PHN

    I am so sorry you are still dealing with the aftermath of Herpes Zoster-Shingles. As you know, you are dealing with the pain of Post Herpetic Neuralgia PHN.

    I will list the meds according to how efficacious they are. Remember, some work better on some, some meds are better on others. Many work better when used together- a drug from two or three different classes.

    Sometimes, the Physician places on patient on a lower dose, but needs to increase it to help with the pain-itching. I would usually avoid Lyrica, as there are many adverse reactions, and it is difficult to wean off of.

    Gabapentin

    Venlafaxine or Cymbalta

    Sometimes, you need to be placed on a cocktail of medications as they will work synergistically to help you. These are all by prescription. I have grouped them according to class. A clinician would start with one from the Anticonvulsant class, taper the dosage up, then one from the Antidepressant Class, etc. This list is by no means complete.

    Anti-convulsants

    Gabapentin-Neurontin

    Pregabalin-Lyrica

    Anti-depressants

    SNRIs

    Cymbalta

    Effexor-Venlafaxine

    Heterocyclics

    Nortriptyline

    Amitriptyline

    2. I would find 100% cotton knit clothing. Make sure there are no seams to irritate your skin. The cotton knit is the most breathable, least irritating cloth to most individuals.

    3. Use Lidocaine Cream or Spray OTC topically to help with the pain- itching, eg, Solarcaine with Aloe. Many on this forum feel either Lidocaine or Benzocaine help with the pain-itching. The cream might soothe the inflamed nerve endings better and last longer. You can only use Lidocaine 12 hours on and 12 hours off, as the usefulness will extinguish itself.

    4. At home, use ice or cool compresses. Do not take hot showers, as it will only increase the pain-itching

    5. Most Importantly, get the Shingrex Immunization as the vaccine has been helping decrease the pain and itching of Post Herpetic Neuralgia PHN.

    It is a two phase vaccination two months apart. It is an intramuscular injection. It is highly efficacious in stopping recurrent Herpes Zoster-Shingles.

    It is available in the US at the pharmacy and covered by insurance. If you are younger than 50, and you have had shingles, it is still covered. You might need a note/ prescription from your Physician.

    If you are in the UK/Canada/Australia/NZ, I know it has been distributed there, but the national health insurance may not cover it until age 70, which is ridiculous. It is expensive, but I would have paid thousands.

    Google High Lysine Low Arginine diet and Herpes. The amino acid Arginine triggers Herpes and Lysine helps prevent Herpes. By Googling the above, you will find foods and the amount of Arginine and Lysine. This diet did help me avoid Herpes Zoster-Shingles for eight months.

    May I ask where was the rash and why did you need the Valtrex for three weeks? Also how old are you?

    I am a Nurse Practitioner in the States and have had Herpes Zoster-Shingles in my right ear every 3-5 weeks for the past 21 years. I have had it in my right eye twice. The Herpes Zoster-Shingles has now escalated in intensity in my right ear and spread to my right scalp.

    I just received the Shingrex Vaccination yesterday, and the side effects are similar to the influenza vaccination: soreness at the site of injection, general aches and pains, mild fatigue, but easy compared to shingles.

    Best Wishes

    Merry Juliana

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    • Posted

      Hi Merry,

      Thanks for the reply.  I am 56 year old. Mine started from the back and it expanded to the under arm and to my chest.   About High Lysine Low Arginine diet and Herpes, I fount this out after the rashes occurred but does this still applicable with PHN as the rashes had gone over 2 months now.  Basically with PHN do I still need to consume food with low Arginine  and high in Lysine ?

      Thanks so much,

      Al

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    • Posted

      Hi Alfoon,

      Consuming the High Lysine Low Arginine diet lowers the risk of recurrent Herpes Zoster-Shingles. It does nothing for Post Herpetic Neuralgia PHN. I would eat a Mediterranean diet, which is a healthy diet. If you cut out chocolate, beans, and legumes, and eat a Mediterranean diet,you then will essentially then eat a High Lysine Low Arginine Diet. To help reduce the Post Herpetic Neuralgia PHN or risk of recurrent Herpes Zoster-Shingles, if you are in the States, I would get the Shingrex vaccine after six months. If you are in the UK, you are out of luck regarding the Shingrex vaccine.

      The nortriptyline may help you, or other meds that I suggested may work. Each person responds differently to the meds. What is important is finding a clinician willing and knowledgeable to work with you who knows how to titrate and combine meds that help reduce the Post Herpetic Neuralgia so you can function.

      Best Wishes

      Merry Juliana

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  • Posted

    I had shingles in October 2016 in my back/chest and have dealt with PHN since then. Merry gives some very good suggestions on treatments, but I have to caution you on the meds. For many of us Cymbalta and gabapentin (Neurontin) have caused more problems than they solved. The confusion, zombie feelings, memory loss, fatigue, depression, suicidal thoughts etc. are worse than the pain. Then in order to get off them many of us go through "discontinuation syndrome" which is akin to withdrawal. It will take me almost 3 years get off the drugs. I was at 2700 mg of gab, couldn't function between the PHN pain and the side effects and had to quit my job. However, as I taper off the gab, I'm doing much better.

    Many of us do eventually have a decrease in the PHN. Even minimal improvements, which can be hard to notice, in the first 3 or 4 months point to a possible recovery. I'm at that point. Nortriptyline and Amitriptyline may pose fewer problems than the gab. I was/am on gab, Aspercreme with Lidocaine 3 times a day (at four times during the worst of it) Tyelenol 3 times a day (again, previously at 4 times a day) and a previously prescribed anti-inflammatory. Sadly, you need to figure out how to adjust to a life with a chronic health issue. Therapy may help, avoid situations or activities that worsen the pain is also important. I'm VERY careful with bending, lifting, twisting, sitting to long etc. I don't want to exacerbate the problem. Keep as active as you can't without over-doing it. It's good for circulation and as a distraction. Some people have good luck with changing to a more healthy diet. I didn't bother. I'm sorry you're dealing with this, there are both great similarities and differences for each of us in this condition. Some people see great improvement in the first 6-12 months, others after several years, others have little improvement. I had about accepted I wouldn't improved when I realized that previously I couldn't do XYZ, and now I could. I kept track of these tiny improvements, then noticed they were bigger improvements. I'm NOT an overly optimistic, sunny person, but I realized I HAD to focus more on the positive or I was only hurting myself and my family.

    Find something you enjoy, a TV show, a book, watching birds, video games, knitting, gaming, whatever and find a respite. For me, it was ballroom dancing. PHN took that away, but when I could start dancing again and feel like me, it was the start to real recovery.

    Good luck!

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    • Posted

      Babs,

      You make wonderful and life affirming points. You are so correct regarding the medications, that the side effects can be worse than the pain.

      Merry Juliana

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    • Posted

      Hi Babs,

      Thanks for the encouragement. I will start taking Nortriptyline soon and hope this will help.  I am able to manage the pain without the meds but still very painful and feel tire easily.  I hope that my taking Nortriptyline will pain will ease somewhat but don't know yet.

      Thanks,

      Lloyd

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  • Posted

    Hello - I'm suffering from Post Herpetic Neuralgia following 2 bouts of shingles.  My doctor advised that normal painkillers would do little good as its nerve pain.  She prescribed Amitriptyline which is an anti-depressant but can be effective in dealing with nerve pain in low doses.  The only problem is the side effects (it makes my fatigue even worse and gave me a stomach upset), so I had to balance the pain against the side effects, and have now stopped taking it, and so am hoping that the pain will subside.  Sorry I don't have a lot of answers for you but can only share my own experiences.

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    • Posted

      Hi Sjm,

      Thanks for sharing the story. I hope you get better soon.  Mine is close to 4 months now and I don't see any sign of getting better soon.  How long have you had PHN and what is the time gap between w bouts of shingles ?  My doctor  told me that at least it is 1 or 2 years apart but I guess everyone is different.

      Thanks,

      Lloyd

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