PHN-life and death

Brain and nerves
1

Recently read that PHN is the leading cause for suicide among seniors. Having suffered with PHN since 2012 and being over 60 myself I can understand how that can be. Since the shingles virus has been around for decades my question is how was this horrendous affliction dealt with 75/100yrs ago? No cure and no relief. With even less help from professionals than exists today. How many of us sufferers are out there in the world today? I feel alone and am very grateful for discovering this forum. It helps fend off the isolation. My apologies for whining but am saddened that there are so many more of us who suffer with this horrible nerve damage. Hang in there. We must overcome.

"All that we need for health and healing has been given by God in nature. The challenge for science, is to find it." Paracelsus, 16th century, AD

2

There is cure and medications for the painful disorder of PHN

3

I wonder the same thing. With the amount of people that contract this problem it appears that there is little interest in research, the medical industry's answer is throw pain killers at it. I have been down the road of most of the "treatments" which all boil down to pain killers, no one wants to look at the root cause or even come out and tell you there is nothing they can do.

Been to doctors, pain clinics, neurologist and it is always a new pill. Oh, by the way, none of them work.

All you can do is hang in.

4

You have a cure? PLEASE let us know!!!

5

The conditions has many different names, among them, names that points towards ending your own life and so on.

It can easily cause depression in behaviour and thought, that is why communities like this are so important, not being alone and getting some good tips and help from fellow sufferers is a good thing, all in all.

I probably should not speak too much here, since I don't have it myself (my father has and I see how he struggles with it).

100 years ago, people didn't live as long as we do today, and looking at various statistics, PHN seems to be worse the later you get it. (statistically speaking, there are variations). Morphine has been around for a very long time, so I suppose that (and other things) may have been used as pain management, probably similar to how various (maybe less adictive) opioids are used today, when there are no other bright ideas on the table.

Pain management in general seem to have been a field of slow discovery and invension, but it is related to the fact that science still struggle to understand the brain and the nevrous-system properly.

Proof of that point, is the slump that some antidepressives supress pain, as well as changing the mood, for some.

My advice to my father is to try everything, every cream, spray and gel and possibly alternative treatments (botox, other), since I do believe that one can be lucky and find small things that work and if used in combination, maybe can make it bearable in the long run.

Never stop trying and keep reading online about people's experience with various treatments, there may be something that also works for you.

All the best.

6

You are so right to wonder what was done for PHN in years past. My Dr gave me Gabapentin which is clearly for this condition. I took it for over a year. I received relief at first but it hit a plateau, so I weaned myself off. I am 69 and have been dealing with this since 2008. It's a day by day struggle.

7

I dont have a cure... but there are medications that your doctor can prescribe for PHN

8

2012 is my downfall to say the least. I got MS in  2002. This is enough trust me. I was prescibed an oral medicaiton for the MS.  Which undoubtley brought on the shingles. I figured out that the medication lowered my immunity. Then zap..a rash on my back.  Pain, and with MS this causes more nerve problems. I have tried nerve blocks, thinking wow I finally foud something. This was short lived pain was back that night. yes today is my birthday. I was born the year Kennedy was shot. I am the person that did everything before 13...Now at 2012 my life is bleak. Pain every morning in my lower torso on the left side. 

The year I got MS I  ran a marathon, the Big Sur. I skied Colorado, and Montana.

Now I at 54 I struggle to get out of bed. Suicide I own two guns, but I am not selfish just in pain. I own a house, have two grandkids. I am Christian, but for last four years, I have been less  than graceful even though Gods grace is enough, I am still waiting for God to open my eyes. I am not ungreatful just angry. Where is the shot, that takes it away for good. Peace. God will not gives us anymore than we can handle. It is written. I wonder if God ever heard the cries of someone with PHN for years.....

9

Odd that you say that since my parents, nor anyone I know of their age had PHN even though most had chicken pox as a child.  It really was unheard of.  I also had chicken pox, and did have a "mild" case of shingles about 12 years ago. Nothing since.  What I think it is (even PHN) is a nutrient deficiency.  I do take a lot of extra Vitamin C (a natural antiviral), D3 and Omega 3s daily.  And I have a wholefood organic diet, cutting out most any regular processed foods. I do believe that's part of the "natural" way of healing and health.  I'm 67 btw. 

10

There are some doctor specifically researching this and they're working with Stem Cell centers as well. I've visited 27 different doctors which include neurologists, acupuncturists, orthopedic surgeons, pain management etc. over the course of 7+ years and they all admit they are baffled and the nature of the damage makes it impossible to cure. Each and everyone of them remind me that I have to take the drugs the rest of my life, however they do sympathize. Only sufferers understand what are horrific condition this is, it ruins our lives!!

11

Sheila,

Your journey sounds like mine, only I have covered just about as much ground in 14 months. There are those clinics that claim a stem cell remedy but their claim falls apart when you visit. There is a clinic in Phoenix that advertises on the web page but they just don't call you back. I followed up on some University Stem Cell studies that claimed success in trials but they don't return calls or emails. 

I am wondering just what it takes for the medical community to react. If I were a doctor I would think that I could retire early knowing the number of people that suffer from PHN. I would have patients lined up for miles.

My most recent "doctor solution" is muscle relaxants. He is a highly recommended Neurologist and claims that treating the muscle will work. After 3 weeks of building up dosages of Baclofin, nothing; but I am willing to stay the course.

I will keep you all posted of results

12

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.

13

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. 🌞

14

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.

15

Thanks for the positive feedback. I haven't reached the end of my rope and will continue to look for ways to live with PHN as well as encouraging others. It is a tough row to hoe for PHN sufferers but one that needs addressing in forums like 'patient'. I think it's a solice in numbers thing.

16

No problem, this painful situation causes so many emotions

17

 I have to hold  back from the glorious whining. Of course I am just reminding myself just how much this pain sucks, four years. I just turned 50. damn now I  am 54 this crap is going to take me to my grave. MS was more of an emotional adjustment. This pain is more of tolerence adjustment.

18

roka, I have no idea what that acronym stands for, but O.K 

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.

19

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.

20

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.