PHN-life and death

PHN- what? where?when?and why? Lots of questions and very few meaningful answers. We who have this affliction are left to our own devices. In this age of technology and medicine you'd expect more. We are the forgotten few. Cut to the 🎻. I am grateful to be alive inspite of what I portray. Forgive my whining.

Your whining is justified. This condition ruined my life but I still manage to find a little joy in each day by appreciating those things in life that I have been blessed with. Although, as I stated in earlier posts there are those days where I don't think I'll make it but I always do. Fortunately, we have each other as stated in someone's post "the forgotten few" and have this forum to share new ideas that can ease this nightmare. Thanks everyone for your ideas!

yes one has to wonder why the medical community hasn't found a way to get rid of PHN pain a thing of the past. I am adjusted to the pain use my Aspercreme with Lidocaine. Wish I had the answer.

I hadn't seen this thread before, I wrote similar concerrns and disbelief about the medical community's lack of knowledge and arrogance in other threads. Luckily my GP was very good. I'm finally seeing real progress after 5 months, starting to drive and resume some normal activities.

That makes me wonder how many people see relief (without ever having anti-virals of course) at 3 months, or 5 or 9 or 27 etc.? Is there a much longer time-line for recovery before there is almost no relief?  When I detach myself and look at this, it really is a fascinating condition. Wouldn't you think SOMEONE would want to help us and sort out what works and what doesn't? One thing I do take in addition to the usual that I haven't seen mentioned, is Tyelenol. It was at a higher dose than recommended now (1,000 mg every 4 hours) but with the Gab, lidocaine pain cream and my previous prescription NSAID called relafen, after the first 5 days, there was was type of relief. So, as others said, there are things that for some people work to varying degrees, but it's a shame that the best info out there is really right here.

Please be careful with Tylenol. Anything over 4000mg a day damages the liver, and I worry about a cumulative effect as well. Some opiates have Tylenol in them, I stay below 2000 a day because I'm a very small person.

Thanks Sheila. I was doing my best to increase the time between doses as I was aware of that. I don't drink and don't take any other heck-let's just call it Tylenol, but of course I take the generic-Tylenol in any other products. The four hours was in Nov/December, then I pushed it to 4 1/2, now it's more like 5. I did drop down a few weeks ago with the 3 times a day, but I could feel it. A niece/pharmacist recommended using regular 3 strength 325, to get below the 4K level, I now do 1000 (two extra strength) twice a day, then 3 of the 325 and either don't do that last dose in the evening or just two 2 of the 325. I'm not small, 5'8 (ooh this is tuff) 175#. I've been worried about the Tylenol but it definitely does help me.

You are a brother in arms and I feel the pain and anguish. I am a decade older than you and have battled PHN for 5yrs this July. I would like nothing better than if we could wake one morning and it would be gone. Like the nightmare it is. I now realize that is what 'fairytales' are made from. We are more 'nursery rhyme' material. Like Humpty Dumpty. We've had the great fall and you know the rest. The question is how to heal oneself since medical science is lost for PHN cures. Or at least, how can we live successfully with this dreaded scourge? Charlie gives good advice on how to train ones mind to overcome by positivity techniques. I believe he is on the right track as he has seemingly overcome PHN of 26yrs. A great feat in my feeble mind. I have suffered a minute in comparison, although it feels an eternity. ' Keep on truckin', seems our best option cause the other is taking the easy way out. Our Lord has set the bar high with this affliction. I feel that we are learning from His example. We are enduring.

YES, the Lord. I am always told to think about Job, as in the book of...

his suffering, boils, loosing his family, his wealth, his land. God handed him over to the devil. To test one of His most rightous servent. So r. oka I ask God to have patience with me. I am really trying to deal with this. So is my family. So Lord maybe you give me a little slice of people that suffer, to help me understand the test that is set before me,,,just shy of warm gun.

I also own a couple of guns which remain cold but loaded for bear. It never crosses my mind to use one for curing PHN. Despair is an emotion which I rarely felt until this bad nerve deal. Now it seems more often a daily thing. Really ruins the moment which only a sufferer can truly appreciate. Until turning 60 with PHN I was very active physically. I have also skied CO and run 10k & 12k runs in CA. Bay to Breakers being my favorite. I was in the upper 5% of my age group but have since dropped to the bottom 5%. When PHN struck I was cross-fit training for the 60+ men's competition in CA each year. Haven't been able to train since and also now struggle just to rise each day. As a former athlete you know how important physical exertion is for ones mental wellbeing. If I could resume that part of my life it would completely alter my temperament. Enough so to get back a life worth living rather than just existing. So much for what life used to be. I recall Job regained his life. In spades if memory serves. Keep hope alive my brother.

Nutrient deficiency is an understatement for the food that is available for the masses. Processed, polluted with toxins, genetically altered and the list goes on. My original diagnosis PUC (pan ulcerative colitis) I believe was caused from nutrient issues which led to the colonoscopy which led to the PHN. An immunosuppressant infusion (Remicade) administered to save me from the PUC, allowed the herpes zoster virus to come out of dormancy. It sent the PUC into remission but PHN was the final nail in the demise of 59 yrs of perfect health. I now eat like you do. With the additional fermented foods and probiotics such as home brewed Kombucha. The GI tract is healthy but the PHN keeps me from being a complement to humanity. 🌞

Thanks for sharing that r.oka, sorry you've gone through all that. It's too bad how even "healthy" foods can be deceiving depending on how they're treated and grown, and why I try to encourage wholefood organic to make it a little simpler.  I'm learning about probiotics too.  You didn't mention taking daily vitamins. C, D3 and Omega  3s to me are imperative, in particular as one gets older.  Vitamin C alone I've known for years as an amazing natural antiviral, and may be something to help with the PHN.  I am talking about a few thousand mg a day.  

Take this with a grain of salt, because I don't have the citation/reference and go from memory here.

But I read a report/article about the vaccine for Shingles and scientists seem to scratch their heads why the occurance of PHN seem to have increased.

Inituial studies have shown that the vaccination against Shingles, seems to be effective for only a few years, much shorter than anticipated.

One theory of increased findings of PHN, is because of the introduction of a vaccine against Chickenpox.

The part of the population that already had Chickenpox aren't regularily exposed to the virus as in the past, so the body does not have any antibodies against the virus, if Shingles should appear.

Fiurther, they theorize that this enables the virus to do more damage, once Shingles appear.

I cannot find the article that discussed these issues anymore, to take it with a big pinch of salt, but it's interesting information none the less.

Personally, I don't find that hard to believe, and very possible. Thanks docmartin.

Very welcome.

Although, every (well, most) clouds have a silver-lining; There are ongoing trials on improved vaccines, that should be longer-lasting and more efficient, safety-trials has been performed:

https://www.ncbi.nlm.nih.gov/pubmed/26865048

(In the description above, the issue with the longivety and efficiency  with the current vaccine is mentioned).

Though, I would still take the current vaccine if I was offered it, because it does provide some protection and any protection is better than no protection.

While I understand, considering the pain and grief caused by PHN and shingles that I hear here, why one would want a vaccine,  I'm still convinced organic foods and vitamins are working for me.  The only vague vaccine I remember is the polio vaccine as a child, had all the normal childhood diseases, and doing pretty well thus far with only a mild case of shingles one time.  Actually, polio, if you look of Klenner, was treated very successfully with IV vitamin C too.  Guess that's how I roll

I try to eat healthy but nothing appeals to me. Don't feel well enough to cook much, reach for bottles of Ensure to get me through those days that I just cannot chew. I am still holding out hope for the stem cell therapy but what we need is not legal in this country yet, as I mentioned in a previous post there is a center in the Bahamas.

I've always had a relatively healthy diet but am trying harder now. I'm doing an update here, as yours was the last post. I had a really good week two weeks ago and considered dropping the gab by 100 mg per day again, but then tried to have a "normal" life, got too active and set myself back a few weeks. You know how that goes. I honestly thought I was at the very end of this condition, but now I know better. So, the last couple of days have been better, so I'm grateful that my situation is easier than others. But I still need to watch it. I'm still hopeful that I'll be continue to move forward in additon to those set-backs.

In my case most days are difficult, however some not as bad as others. Nonetheless the condition renders me useless apart from trying to accomplish one or two small things the day. Stress and activity exacerbates, weather fluctuations can also increase the pain. I have yet to have but one day in eight years that I can honestly say I was pain-free. I am not trying to discourage anyone because were all different in terms of size & location of damage . I had already been struggling with some neck and back diseases couple with degeneration which accounts for some of the days where I cannot get out of bed. I too have titrated down on all the drugs as I had determined a more natural approach preferable and each time failed miserably, would take me weeks to recover. I so hate the drugs but life without them is more than unbearable! We all have to be realistic and know that what is happened to us is horrific but we could never give up hope! Find a little joys in your life and focus on those and we will all continue to search for help. Keep the faith my friend!

My sister has DDD and has had fusions and complications, so I understand. Thanks for the positive words, I've been having a bad stretch. I've been trying to get back to more activities but putting dinner in the oven, did me in. Had to rest for 20 minutes before the pain got better. I am revising my expectations every day, not in a positive way. Plus I had an attack of vertigo the other day, which was frustrating. It's happened a few times over the years, it's benign, but scary and leaves me with "motion sickness" That happened a few days ago when I was already having a really bad day. I'll keep trying Sheila!

I am so sorry for you and I completely understand your ups and downs. I too, am suffering from a particularly bad patch both physically and emotionally. Stress and lack of rest seem to be the catalyst, to include activity. But what are the alternatives? More pills? I've started to pray, more like beg for help because I'm not in a good place. A flashback to my past active, happy life sets in motion a cascade of tears and hopelessness. Currently researching a healer/Shaman for help. Has anyone consider this type of therapy? What do we have to lose?