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linda61644 linda61644

PHN at 6 months post shingles

Looking for encouragement and advice for 87 year old father who is at the 6 month mark for PHN in area of left scalp, above left brow and in left eye.  He also has generalized myasthenia gravis which was very much under control until docs added immunosuppressive drugs to his regimen and in spite of receiving the shingles vaccine a few years back developed the shingles and subsequent PHN. Tried Gaba,Lyrica,Cymbalta but did not tolerate these oral meds well because of the MG.  He has been using the cold compresses from the start, but it is only a bit of relief.  The pain and extreme itching, particularly above the left eye are unbearable.  He sometime takes a half of a narcotic pain pill, which I'm not sure really helps.  He has the 5% lidoderm patches which he has not given a consistent trial. Is it worth trying nortriptyline?  I am leaning more toward topical treatments from a safety standpoint.  It is so heartbreaking to see him go from a totally active lifestyle to being home bound and suffering for 6 months.  Will appreciate any and all suggestions. 

5 Replies

  • gail09802 gail09802 linda61644

    I'm so sorry about your father. I took Nortriptyline. I'd read about it and asked my doctor if i should use it. The first thing she said was that it's a great sleep aide. I wasn't sleeping much due to my PHN so I was grateful for it for that reason. I don't know if it helped the pain, but it definitely helped me to sleep. 

    Good luck.

     

  • lennybread lennybread linda61644

    Hi, so sorry to read about your dad's PHN.

    What a nasty thing Shingles is .

    No one deserves it, especially not at his age.

    I had body shingles on the left and now PHN

    and I am controlling it with Lyrica but on the face is another story.... 

    Please let your Dad know that he is not alone and that he has people on the other side of the planet thinking about him and wishing him well asap

  • raymond24308 raymond24308 linda61644

    Hi Linda

    Could I strongly recommend a topical cream for your fathers problem, as it is not a drug that will affect other parts of the body, unless he is allergic to aspirin.

    I have recently posted my normal formula for relief from PHN pain, but for treatment close to the eyes I have a different analgesic which still has good painkilling features.

    My alternative formula is as follows:

    250 grams of Invite Vitamin E cream(does not form asking with continued use).

    Two 5 gram tubes of Aciclovir Cream(an anti viral cream for cold sores).

    65 grams of Dencorub Arthritis Cream(aspirin like pain relief).

    Mix thoroughly, and apply sparingly to the affected areas. Rub in well for maximum affect.

    Try this treatmen, but be sure to keep it away from the eyes.

    Kind regards Ray.

     

  • charlie58834 charlie58834 linda61644

    Hi Linda,

    I have PHN in the same area, but on the right side.  I also have both pain and intense itching.  I've had this since 1990, 27 years.  I'm a retired clinical psychologist with 40 years of clinical experience, much of it dealing with chronic pain. 

    A few things that are very important for your dad to know:

    1. PHN is not considered "curable."  That is, cessation of all pain is not going to happen.

    2. While this may sound pessimistic and negative, knowing this truth opens the path to pain management.  Most people early on with PHN, and this was true for me, focus desperately on getting rid of the pain totally.  Then, when they try things that only help partially, they discard them, hoping for a totally pain-free lifestyle.  Once they accept that it is not curable, they can focus on decreasing pain, and they can accept partial improvement. 

    3. PHN pain does generally decrease with time, but very slowly, over years rather than weeks or months.  But, this gives one some hope.  Mine is now more of an annoyance rather than a crisis.  I am very active, and it does not curtail my lifestyle. 

    4. There are methods of managing the pain better, and they really work, if we focus on improvement rather than a cure. 

    From my experience, opiates/narcotics are a dangerous path to go on.  I've never seen anyone with PHN get good control of pain with opiates, but I have seen several folks become totally disabled from the opiates themselves.  PHN is notoriously difficult to treat medically, so docs often resort to opiates.  I think this is a mistake.  Once people are on them, they will get less and less effect, causing them to increase dosage and often become addicted.  Also, opiates are well known to cause "rebound pain."  This is a well known medical syndrome, and I've often seen people on long term opiates stop them and find that the pain actually is less without them. 

    My own experience is that I've found that topical creams/gels work better than the oral meds, with fewer or no side effects.  My favorites are Aspercreme and a prescription cream for eczema called triamcinolone acetonide.  Other folks on PHN sites here have found lidocaine gels very useful.  The Dencorub that Raymond talks about in reply to you has the same basic ingredient as Aspercreme:  Salycilate, which is basically aspirin.  All of these work fairly well to decrease itching, and to some degree pain, for me.  They help me sleep better.  

    I get severe exacerbations of itching sometimes.  Over the years I have learned that if I start to get one of these and immediately drink a large glass of water, the itching will stop.  So maybe those are related to mild dehydration?  Worth a try with your dad!  Won't hurt, and it's free.  

    The various nerve-pain meds like gabapentin, Lyrica, Tegretol, and neurontin can be helpful but usually include sedation as a side effect.  I see lots of complaints about that on these PHN sites.  But, they might be worth a try.  They are not addictive. 

    Antidepressants:  The older ones like nortriptylene [Pamelor] and amitriptylene [Elavil] are sedating, and may help with sleep.  They are not great for most people for depression.  In my opinion, they do not really help most folks with pain itself, as some docs believe.  The sedation usually lasts into the next day though, making them questionable as sleeping meds. 

    Newer antidepressants work better on depression.  They are usually not sedating [Remeron excepted], and they have more tolerable side effects for most people.  The best in my opinion and the opinion of the docs I've worked with are Celexa [citalopram] and Wellbutrin [bupropion].  Once the depression is under good control, most people report decreased pain.  I personally am on bupropion, 300 mg. XL, and it works quite well with no side effects for me. 

    Psychologically, the best therapy for chronic pain is CBT [cognitive behavior therapy] according to most of the research.  It involves recognizing unhelpful thoughts and changing them.  It has been shown to be more effective than antidepressants.  It's helped me a lot, and my patients too.  I've started another forum on this site to help folks learn and use CBT. 

    So, a lot of info here.  Please let me know if you have questions.

  • mervyn3507 mervyn3507 linda61644

    Hi Linda. Greetings from Canada.

    I've had PHN on my left hip/flank for 4 1/2 years. Have gone through all the drugs you'll find on any list, plus a variety of nerve injections. None have helped in any way. I've used Ray's formula for cream and it helps me marginally. I'm also using 15% Lidocaine cream from the pharmacy, which also helps somewhat.

    My wife and I attended a granddaughter's high school grad the end of May, which involved a 2 hour flight and 2 1/2 hour drive to the U.S. and have just returned from visiting family for 10 days ( a 75 minute flight). These are the first trips I've taken since I developed PHN. It took a lot of "self talk" to make those trips, recognizing that the nerve pain is not likely to go away, but staying at home did nothing to improve my condition. While visiting family, I was not thinking about my pain.

    Try the creams on your Dad. May they bring him some relief.

    Merv 

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