Treatment for Post Herpetic Neuralgia

Carol

Yes, the topical mixture works just as well on the skin itch and the small

irritating pimples that appear from nowhere. The Aciclovir Cold Sore Cream destroys the eruptions and itches in about two weeks. 

My shingles keeps trying to return so the Aciclovir is an essential ingredient in the mixture. It is an ongoing problem, but the mixture can

cope with it.

Best of luck in your treatment.

Regards, Ray.

My PHN is SKIN, meaning all of my bod.  I needed and got Percoset, which does the trick.  Should PHN ever leave my system, I would, undoubtedly, have to detox -- happily.

Wow,  I have it in the areas where I had the shingles rash which is pretty much my whole right torso front and back.  I can not imagine having this all over.  Glad you can get relief from the percoset.  I didn't t know you could get that all over your bod!

Yes, the 'tender" areas of skin in particular.  Even the wind blowing on my skiin was painful.  Will it ever go away?  One can only hope.  I'm glad I found this website.  Few people I know really understand siince PHN is rather exotic.  

I tried puting on the ceiling fan once and couldn't stand that.  This kind of pain can't be understood by someone that has never had it.  I too am glad I found people I can relate to.

Hi Carol

I have PHN for almost 3  yrs, like you my skin is very sensitive,

wind, clothes, touch.

Tomorrow going to purchase some topical cream, using one now

its, helps little.

January going to my 4th pain dr for a consultation as I feel my present

dr is not compassionate, rushes thru exam, never gave me a full exam.

Money hungry.

Hope you feel better

Paul

Hi Paul:  I feel for you. Trust me.  What I've found is that 99% of the doctors mean well but know nothing about PHN.  they don't know how to help.  My pain doc here tried many things, but none worked. In the end, he put me on percoset and Gabapentin (for nerve pain).  It's 2 years later, and I'm able to hold the amount I take.  I did try once to get off of the Percoset, but it became clear that the virus was still alive and "well" so there was no point to detoxing.  If I ever see an indication that the virus has "gone away," I will get off of the percoset.  In the meantime, I live a relatively pain-free life, and I think that's important.  As for side effects, I do forget a few short time things... but all in all, I'm doing very well.  Good luck to you.  Carol

I know (commiserating helps).  Have you tried TENS or any other electrical stimulator?  If my pain were centralilzed, it might help, but that's not the case.

Carol

Hi Carol

Thank you for your kind words.

My dr told me he would increase the dosage of Lyrica

Then he told me I was at the top dosage.

After doing about 15 mins of research  I found that

he can increase the doage one more time.

Now I printed out 2 websites giving the proper doesage

of Lyrica for PHN

They are not up on the dosages.  He is very arrogant.

Wishing you the best

Paul

Hi Paul,

I researched dosages at Drugs.com and under Postherpetic Neuralgia people who can tolerate "Lyrica may be treated  with up to 300 mg two times a day or 200 mg three times a day (600 mg/day).  In view of the dose-dependent adverse reactions and the higher rate of treatment discontinuation due to adverse reactions, reserve dosing above 300 mg/day for those patients who have on-going pain and are tolerating 300 mg daily."

I am now taking 500 mg/day (100 mg in the  a.m., 100 mg in the afternoon and 300 before bed.) I moved up very slowly. I started at 50 mg., 100 next two days, 150 mg next six days, 200 mg next six days, 250 mg next four days, 275 next 12 days, 300 next 14 days, At this point I was having a dispute with the insurance people due to quantity limits of 300 mg./day and my neurologist wanted me on 500 mg/day.  It took 19 days from the time of the original Rx from the doctor until I finally received the new quantity of 150 caps for only a 30 day supply.  Hurricane Irma delayed the shipment part of this time. The next 4 days I took 350 mg/day, 400 mg the next four days,  450 mg. the next three days and finally I am taking 500 mg. day. Please note that all of these dosages were spread out throughout the day to avoid most side affects. Hope any of this helps.

Roberta

Hi Charlie:

Thanks for your comments. I can't imagine having PHN for 26 years! I know it can last a lifetime and, sadly, those of us with it are legion. I'll try Aspercreme as well as other creams that have been suggested. So far I've tried Capsaicin (various strengths), LivRelief, 15% Lidocaine,, and several mixtures from the pain clinic, with no relief from any of them. They don't seem to penetrate deeply enough. After a year of drug treatment from one pain clinic  and a Nerveblock injection - none of which helped, I was told to go home and "change my brain". My brain isn't co-operating!

I've read books on how the brain changes and heals itself, but have been unsuccessful in attempts to harness the findings.

I'm currently taking Naltrexone and Palmitoyletholanamide (PEA) as recommended by my current pain clinic, but have no positive results so far. Will keep trying. Thank you to all of you who are participating in this forum for your comments and support.

Merv

I have come to the conclusion after 5 yrs. with PHN, that healing as you say, comes from overcoming this terrible affliction with ones mind. I have tried everything from bee venom therapy to steroid injections without success. No topical has worked either. Opioids through titration have been whittled to 20mgs per day from 80mgs. One has to believe the only way to a normal life is to live with the PHN and come to embrace the battle to overcome the mental health disruption that comes with it. I have yet to regain a lifestyle that resembles what I had before 2012. You sound as though you have fought your way to normalcy after 26yrs. How long did it take before you felt as though you were winning the struggle? You are to be commended on showing those of us who are struggling, the path to recovery. Keep on that path for all of us. Thanks my friend.

Hi R.oka,

I felt that I began winning the struggle against PHN when I got my depression under control, and when I changed my thinking from thoughts like "I can't live with this...This is horrible and awful...My life is awful" to thoughts like "I WILL find a way to have a good life even with PHN...This is not horrible and awful, but it is a great challenge...My life will be good again as I learn better ways to manage the pain." 

Two things helped the depression:

1. Antidepressant medication [not tricyclics, SSRI's or other more modern ones].  The best for me has been Wellbutrin.

2. Cognitive behavior therapy, which basically involves changing your thought patterns to be 100% true and helpful to you, not allowing more negative thoughts, and working toward solutions rather than focusing on pain. 

I decided I would search for solutions other than oral meds, and did find some that worked well.  But I also accepted that I will not get rid of the pain, I will just tone it down a bit and then learn to live well with what pain is left. 

Thanks for your support. Mind over matter is not something I am trained for but I have a brother who served and retired from Army Special Forces. He has shown me how that is possible even when chronic pain is the issue. I hope you can provide techniques as well with your background in psychology. Your help is greatly appreciated by all who suffer. Thanks again.

R.oka,

Techniques you asked about:  Cognitive Behavior Therapy [CBT] is, in my opinion, the most effective and fastest way to alter one's emotions, as well as one's experience of pain.  When I began changing my thinking, not only did my mood improve, but the pain did not seem as severe.  It did not seem to interfere as much in my life.  So, you can access CBT from two sources:  A therapist who specializes in CBT, or books on CBT.  Books:

Change Your Brain, Change Your Life, by Amen

Mind Over Mood, 2nd Edition, by Greenberk and Padesky

Retrain Your Bran:  CBT in 7 weeks, by Gillihan

Cognitive Behavioural Therapy for Dummies, by Branch and Wilson

Feeling Good, the New Mood Therapy, by Burns [good but long, one of the first books on CBT, published in the 70's].

CBT seems complex at first, but once you kind of get the hang of it, it is easy to use.  There is more research, showing this therapy is the most effective, than any therapy I've read about in the research on psych therapies. 

Yes, our mood follows our thoughts. Seems so simple, but a lot of people don't "get it". and realy get themselves in emotional stews. The 7-day mental diet by Emmett Fox won't cost you a thing. You will find it in a Google search and can read it online or print it if you prefer.   if you are trying to change your mood and outlook, you need to go on the mental diet. It was wildly embraced a couple of generations ago.  I went on it years ago and it works. It is a technique so effective that it lasts a lifetime. I think the reason it would help one feel better is because the mind becomes so active and "unleashed" after dwelling on negative thoughts. Once those are abandoned then the mind entertains other things which are positive and optimistic. Charlie has expressed great advice. The 7-day mental diet printed is just a very small booklet. You won't have to study the whys and wherefors with the 7 day diet. It gets right to how to change your thoughts.  

A lot of people think CBT is too simple to work, that to make good change we should have to spend months or years in therapy.  They think of it as "positive thinking" and believe that somehow that would be lying to yourself.  CBT is a little more complex, but still pretty easy to learn.  It's effectiveness has been proven many times over. 

My rules for healthy thoughts:

1.  The thought must be 100% true.

2. The thought must make you feel better, not worse.

If a thought fails either rule, it must be changed to satisfy both rules.  Then, the thought must be practiced, so it becomes a habit. 

Example:

Original thought might be "This pain has ruined my life."

1.  100% true?  Well, maybe partially true, but for a life to be ruined you must have no enjoyment at all, ever, not even for a few seconds or minutes.  Not really true...all of us have at least moments of enjoyment.

2. Make me feel better?  No, makes me feel much worse, drags me down in mood.

So, it fails not one, but both rules.  Has to be changed.

Change:  "This pain is really difficult, but I still have some times I can enjoy."

1. 100% true?  Yes.

2. Make me feel better?  Yes, a little better.  The pain is still difficult, but it helps me feel a little better.

Now I know it's a healthy thought.  Now I practice the new thought, and don't allow the old thought since it's an unhealthy one. 

So, CBT is not simple "positive thinking," but that has something to do with it.