PHN-life and death

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

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

There are no medications  to help  PHN when it affects the eye, and I have tried lots of drops, pills etc but with no relief of the awful itching and soreness in and around my eye and it is now a year since i was diagnosed. it makes life very miserable at times as the Dr told me that  the eye is the worst place to have shingles, I can certainly believe it!

Gabapentin is one.

The eye is so close to the pain center in the brain that I would imagine the only thing you might get relief from would be a gel ice mask. You can't put the creams on it so I suspect the aforementioned is the only answer for you. And the medication offers no relief at all?

I have PHN in the eye, eyelid, forehead and scalp. 27 years now. Yes, there is no cure. But, once you stop looking for a cure, you can begin looking for things that help. Things that either decrease pain/itching a little, or things that allow you to ignore uncomfortable sensations more effectively.

For me, Aspercreme has been a great help and continues to help. For others lidocaine gel helps. You can put a little on the eyelid without getting it in the eye. 

Itching:  I've discovered that, for me, my worst itching bouts are helped by drinking a large glass of water. I know...seems like it would not work, but it does. Takes about 30 minutes. I'm more careful to stay hydrated now. 

Some hope:  PHN definitely decreases in intensity with time. Very slowly, but it does. My pain is far less now than it was early on. So, the goal becomes to look for things that help a little, and use all of them that you can. Looking for a cure will result in very negative moods. Believe me, if one ever appears, we will all hear about it. 

I was glad to see your post..have it since 2012..scalp, forehead....I have learned to accept it, but when I have an attack, I want to die. How have you had been able to take so much pain for 27 years. I am 68..I don't want live like this for another 5 years..Right now I have spent 10 per cent of my life in misery. That is way too long. A female can live well into her 80s. I don't want to ,knowing that I am stuck with this. thanks for listening.

 

Hi Lisa,

We are the same age and have PHN in the same area!  My pain and itching were extreme in the early years, and I became very depressed rapidly, with thoughts just like yours. I'm a psychologist and knew I was depressed. So, I saw a therapist and got on antidepressant meds. Both things helped a LOT. I used cognitive behavior therapy (CBT), learning how to change thoughts to change emotions. I tried oral meds (Tegretol and another one) but didn't like side effects, so I settled on using topical creams and gels. Found Aspercreme and lidocaine gel. The combo of those with medication and CBT made my life not only tolerable but good. 

As years went went by I got better and better at managing, and I took some pride in that. Some people think you should never be proud, but it sure beat the heck out of being sad and depressed and angry!  

I thought the pain and itching would would never improve, but after more time I had to admit I was wrong...they both decreased. Now my PHN is not severe, it's an annoyance. Last year I discovered that drinking water would end an attack of itching in about a half hour!  After 26 years I was still learning to manage it better!  That's actually kind of funny to me. 

So, that's my story. I really hope his helps you, that's why I am on this site. When I see others not lamenting about pain but offering encouragement and coping strategies I'm really proud of them. Not that people shouldn't be sad and down and angry with this problem (all of us have been there), but that they are getting past that stage and working toward solutions and helping others. 

Charlie

Charlie's comments are so helpful for me, I hope they can help you. I've only been dealing with PHN for a year and have had to use his suggestions to get thru it. Mine is in my back and chest. Each location has it's own misery, for me, reaching, bending, lifting set it off. Right now I've been going thru a tougher time as my husband's recovering from knee surgery so he can't help like he used to. I do things I know will cause pain, which is very upsetting. I learned in another thread from me, that others feel that stress and exhaustion definitely make the pain worse. I had days where I just couldn't work thru it, but after even a few hours of relief, I remembered they were right and tried to focus on knowing that there is some relief, even if only a little. Then maybe tomorrow it will be a little more, then a little more. Then maybe there'll be a bad stretch but it WILL get better, even if it's only 5%..

Thanks everyone..it is so good to find people like us because 

NO ONE ELSE understands. I rarely get into it w anyone anymore... and Charlie it was reassuring to hear yr, words because we have the  curse in the worst possible place ever.

I was a fantastic swimmer. I cannot swim. I cannot wear a cap. I cannot let any irritant like chlorine get into my eye. I would probably have to be committed from being in pain...you understand..it's the optical nerves that are all messed up. I think I could manage the breads stroke but I would have to twist arms at a Y to allow me to wear a net and threaten with an ADA suit!  

You must be dealing with this since yr. 40s.. I am so so sorry for everyone.

when things get rough, maybe once or twice a week, I shut down, put an ice pack on my head, lay down, take opiates and Medical marijuana.,,,only thing is it is so so Expensive.

i am entitled to get as stoned as I possibly can and having been doing so since 2012. I will ask about the crewmen.

yes water is a great idea. Whenever I get anxious like always I have a glass of water.

i am Glad I found the board.

 

Please be really careful with the opiates. You don't want another long term problem. 

Charlie

Thanks. I take them when I need to do so ...for many years..I am not an addict...famous last words. And I don't take them unless I am ready to throw myself I front of a car because when I use to take Percocet my tolerance was enourmous and so I threw them away. I take tramadol when I. Am ready to die, My greatest pleasure is marijuana and is the best substance available out there..and we ALL QUALIFY for it.

Charlie, I still don't understand how you have had it for half your life.if you get a chsnce let us know your stages and degrees of pain.. I think we would 

benefit. My attacks are not infrequent but they do subside. My head feels like a giant pin cushion and when I am tacked now it is by those voodoo pins sticking my scalp. Sound familiar.. My life since PHN had been spent a lot of time lying down in pain, I am tired of beating myself up over it.the pain has really messed me up. When I feel better, I can get thingsdone, 

when I am under siege, I simply lie down , with the ice pack and get stoned.

thanks everyone. Glad to listen to all reports of being tortured by PHN.

Lisa,

You asked about the history of my pain, and I think you mean how it has changed over time.  I have pain and itching, but itching has always been worse.  I have pain with touch, especially light touch, and sometimes have shooting pain.  Itching is constant, with exacerbations that are extreme.  The first few years my symptoms were quite extreme.  I often scratched my scalp open.  Eventually I trained myself to rub rather than scratch.  Then to use Aspercreme rather than rub.  Then discovered that itching exacerbations were relieved within 1/2 hour by drinking a large glass of water [I guess mild dehydration is a main factor].  Both itching and pain have decreased over the years, and I have learned to manage them better, so now they are just an annoyance.

A huge change came after I began practicing cognitive behavior therapy [CBT].  This involves changing thoughts, which changes emotions.  I discovered that changing thoughts also decreased my pain, oddly enough.  Words have extreme power, over both emotions and even physical sensations.  Thinking catastrophizing thoughts ["This is unbearable...I can't live with this pain...I might as well be dead...this pain is ruining my life...my life is hell"...etc.] has the effect of not only creating equally horrible emotions, it also magnifies pain.  Curiously, we "frame" our experience by labeling it with thoughts, and those thoughts either make our experience worse, or better.  So, when we change thoughts to be more helpful, BUT ALSO 100% TRUE, our emotions and our pain improve.  This was the most important change I made in my PHN journey.  My new thoughts were more true, and more helpful to me:  "This pain is really hard to take, but I can and will manage it better...I can live with this pain, it's just difficult...I will not let the pain ruin my life, I will learn how to live with it and have a good life...Being dead is not an option, so I'll learn to manage it better and enjoy my life." 

Most people think of CBT as positive thinking.  It is more than that.  Positive thinking may or may not be true.  If it's not true, you will know that and it will not help.  BUT, if you make it 100% true, and you keep yourself to thoughts that also MAKE YOU FEEL BETTER, NOT WORSE, it really really helps. 

So, once I started changing thoughts, my life actually did get better.  And, now that my pain is lessening more and more with time, my life keeps getting better and better.  And, I know that I've been through something really difficult and I have managed it well.  This makes me stronger, and assures me I can handle lots more than I once thought I could. 

I now know that I can have a level 10 pain, but only suffer at a level 3.  Pretty nice, huh?  I'm not bragging, I'm talking about a system of pain and emotion management that we ALL can learn.  Because I can assure you that in the first few years my pain/itching was 10 and my suffering was also a 10. 

Most of the time my itching/pain now would be rated a 1 or 2.  I often don't notice it at all, especially when I am busy doing something.  I am very active for a 68 year-old, but I also rest a good deal. 

So, that's my story.  Hope some of you will decide to go this route.  CBT can be learned with the help of books [explore online, buy there or elsewhere], or with a therapist who specializes in CBT.  If you decide to go to a therapist, ask her/him if CBT is their PRIMARY METHOD OF THERAPY.  Almost everyone will say they practice it, to get referrals I guess, but few are good at it. 

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!!

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

Daily starting about 2 PM the severe pain starts to set in and the opiates start going down my throat. I feel like a junkie and resent it! I've had to have a couple of surgeries since the onset of this condition which has unfortunately exasperated the pain. I have no answers other than I am considering a Stem Cell center in the Bahamas that is promising, but of course there is no guarantee. And it's outrageously expensive, 35,000-40,000 cash.

The only advice I can give you is to try anything to get some semblance of relief, but admittedly there are nights where I don't think I will get through it! I have other painful conditions in my back and neck as well that are troublesome in and of themselves and then add the PHN nerve damage and there are no words to describe the pain! I wish everyone luck, and feel blessed to have this forum to exchange information and know that I'm not out there alone!😢

Sheila,

When the Nurologist suggested Baclofin I thought maybe this guy knows something. I am ready to try anything, I have been on this build up dosage routine and so far nothing. 

Hi, I am new to this site. I have had phn on my upper back since 2012. I truly have also tried everything. In the beginning I did not know that there was any help out there at all. I had had phn for over a year by the time my family doctor said "oh you shouldn't still be suffering from that" and sent me to a pain clinic. That began my long road of trying to find a treatment that would alleviate my pain.

 My journey began with intercostal injections which did nothing. Many, many drugs including opiates, gabapentin (2700mg), lyrica, antidepressants and various combinations of drugs...nothing. Capsaicin patch administered by an anesthesiologist, acupuncture, 2 separate spinal cord stimulator trials, Botox injections, topical compound creams and on and on. I wear an eight by five inch lidocaine patch 5% everyday for 9-12 hours which allows me to wear clothing. I have cut holes in the back of many of my tops to allow me to wear clothing without a patch while I am at home. I have a wardrobe of pull on dresses also. The patch allows me some semblance of normalcy on most days. It is not perfect by any means as I still have burning while wearing it when I move my arm and shoulder and if I get warm it really burns. In order to wear the patch outdoors when it is warm, I carry an ice pack and wrap it around my back to cool it down. 

I joined this forum because even though I just carry on as normally as I can, there are days when it just gets the best of me. I have a pity party day. Cry and wallow in my sorrow because no one understands. You can't understand what you can't see. My husband suggested I find a support group. So here I am. 

I don't know that I can add anything of value to this discussion, but maybe it will help me put my feelings down and know that other sufferers do understand. 

I am also amazed ar the lack of knowledge about phn. I have had 3 orthopedic surgeries in the last 3 years. While in the hospital I tell the doctors, nurses and staff that I cannot have anything touch my upper back (hospital gown) and everyone I came in contact with wanted to tie my gown up. So I would have to tell them I csnnot have anything touch my back over and over. Last year when I had a shoulder replacement at a large well known hospital they put a notice on my door that I had shingles so every staff member entering my room put on a hazmat gown and disposed of it when leaving my room. When I left I asked why they were doing that. They thought I had an active case of shingles. No one gets what phn is. When you say it is nerve damage from having had shingles four years ago, all they hear is the word shingles. So I guess what is baffling to me is, if the medical community doesn't understand phn, how can I expect my family, friends and acquaintances to understand. 

I hooe and and pray that someday soon there will be something that actually helps enough to make me feel normal. I know that 5 years is not that long in the scope of my 68 years of life. But to me it seems an eternity!!

i want to live long enough to see my grandchildren graduate, get married and have children. But... there are days....

"Welcome"??? Kmc. Well you found us, but I know you wish you didn't need to. I've only been dealing with this since October and my PHN is not as severe as many others, but your post hits on many things we all agree on. The medical community is clueless! I worked in healthcare for over 30 years so that's helped me deal with this a little better and know when to ignore their "advice" and comments. You may find other support of information groups out there, but this one is outstanding.

Yes, 5 years is a long time, don't think that your problems don't matter. I like the old saying "your broken leg doesn't cure my pneumonia!" (or something like that). Everyone's problems are hard to deal with and no-one, including ourselves, should minimize what effect ths has on our life--their pain doesn't minimize your pain. I had a pity party the other day, and looking back I think, wow, that was a terrible day! I had to say almost the same thing to my husband. "I'm not thinking of "anything" but, but this is hard.  Welcome.