PHN Survival Skills

I fully understand wht you are saying and how you are experiencing life.  All I can say is try everything possible - although I agree it is difficult to balance pain and side effects.  I took some of those nightmarish psych drugs that have pain relief potential in small numbers of people - the impact on my psycholgical health was HUGE and no reall pain relief.  Even if there was a bit the side effects were just not worth it.  I am currently scheduled for medical marijuana in mid sept and also will be seeing a dermatologist in Oct re: the cyrogenic technique from Uruguay that reportedly helps big time.  Will report back on that.  A current challenge for me is the high levels of fentanyl that I am taking is not helping as much as before.  Currently fentanyl is getting huge media attention due to misuse and deaths and this is making it difficult for me/my doctor in getting additional patches when needed.  There was also a recent scientific paper on long term narcotic use and suicide particularly for men that has also created issues.  The media reporting on the paper should have been clearer - these are not druggee getting high suicides or misuse - it is about (mostly) people having sever pain from illnesses or accidents that have radically changed their lives - of course some will choose to end it.  Opioids are not the answer to chronic pain but unfortuantely there are few alternatives.  For me this site has given me extra info - like the cyrogenic procedure and more importantly strength in knowing I am not alone.  THat the impacts on our lives and on how we impact others - friends/family - is not unusual or limited to just myself.  Of course that doesn't change the suffering but it helps one feel not alone.  Lastly it is important to be really clear with your health provider on the type, duration, frequency of the pain.  It is complex - not just "it hurts too much".  No one likes to complain or feel vulnerable but one has to speak about it in a factual way to get attention and find alternatives.   thanks jim

Pamela here, back again at last.  Thank you so much for your helpful comments in reply to my post.  I wanted to acknowledge them earlier, but have been struggling to hold on to my sanity through another rash which suddenly broke out where the old rash had healed.  No-one knows why it should have happened just now, with the old rash only recently gone and PHN in full swing. And my doctor insisting that you can only get shingles once!  Where has the medial profession been all this time!  Not enduring shingles, that's for sure.  I was interested that you are going to try medical marijuana and would be keen to know whether it helps you.  I have heard that it is very effective against pain.  My worry is that it might induce a kind of euphoric daze, where one wouldn't be functioning on full brain power.  The idea of the cryogenic treatment sounded very promising.  It seems to make sense to numb the nerve ends in some way without attacking the brain of the patient, as most of the other treatments do.  However, I managed yesterday to get to a neurologist for the first time and unfortunately he completely dismissed the possibility.  I could not tell if he was just ignorant on the subject, or whether he based his opinion on having learned that it is inapplicable to sufferers from PHN.  I should have asked him, of course, but realise I am not good at tackling doctors.  Unfortunately he also did as I had predicted, and prescribed pregabalin (Lyrica) for me.  This seems to be the most popular and accepted treatment, as several doctors have recommended it.  I don't think I can bring myself to take it, having read in the patient information leaflet itself about the possible side effects - also basically tinkering with the brain/mind.  I wonder if you have experienced this med, and how it affected you.  The doctor did warn me that it stimulates the appetite and leads to weight gain, which would be a disaster for me in itself as I already have a weight problem, but I could possibly overcome that.  However he fudged over my query about withdrawal symptoms and refused to admit that there would be any difficulty stopping it if I realised it was doing no good.  He also tried to reassure me that it would not affect my cognitive powers.  My family thinks it is worth giving it a try, but all my instincts say "no."

I would be most interested to know your views. 

Have you ever had undesirable side effects from the fentanyl patches, when you have been able to use them?  I suppose they are also problematic to get off when higher doses are needed but not available.  Your comments on suicide were very perceptive.  Sadly it seems that many of these drugs do actually help foster such thoughts, I suppose by removing the inhibitions and fears which prevent most of us from taking that path.  A very important aspect, when coping with intractable pain, and indeed many of life's other problems, is to have a system of support like this forum, where one can share thoughts with others who are enduring similar experiences and where we can all give each other some moral support. 

I do hope you, and all the other sufferers reading this, will find something that brings relief as soon as possible.

Very best wishes to all, Pamela

We are so on the same wavelength.  Yes Doctors have their own opinions on these matters and many are not that knowledgable about shingles and to be fair they have 1000s of afflictions to deal with but nevertheless we depend on them for their expertise and ability to prescribe.  I would try the lyrica - it isn't addictive so you shouldn't have a problem getting off or lowering the dose.  These drugs take time to have any impact.  It didn't work for me.  In terms of the the cryogenics - I too wonder given there is no biological plausibility for it (I managed a group of toxicologists and scientists for decades so have some understanding of the subject matter).  I even tried bloodletting and acupuncutre from an MD in Toronto that practices both western and eastern medicine. Went for months and he finally also said it is not working.  THere I thought the accupuncture and blood letting would damage the nerves which would then regenerate - so my way of trying to understand why it might work.   Right now having a terrible problem with the fentanyl - i am at such a high dose and am becoming tolerant that is losing its effectiveness plus the patches just dont stick well for even 48 hours.  The pain is compounded by withdrawal - it is horrendous - one wants peace from the pain but is so agitated from the withdrawal.  Fentanyl also now is getting so much negative press that my doctor is reluctant to even prescribe an extra patch.  So one is treated as a "druggee'.  Anyways not a good situation for any of us.  I am just hoping that the med mar. will help but like you i am not looking to escape through a "high".  thank you for reaching out.   jim

Various types of narcotics up to and including fentanyl. Also cesamet (artificial marijuana like drug)  I was told methadone would be a good choice but it is so difficult to obtain in Canada - mainly used to detox people that are addicted.

Various types of psychological drugs that have some pain relief - including amyltriptiline, cymbalta, gabapentin and lyrica 

Various types of dermal creames which include mixtures of lidocaine, tetracaine, benzocaine, gabapentin, amyltriptiline, ketamine etc

accupuncutre and bloodletting

hypnosis, mindfullness therapies, yoga

neurosurgery and had a internal TENS like unit installed (medtronics spinal chord stimulator)

All since Jan 2007

I'm so sorry to hear how terribly you are suffering with the fentanyl patches.  I can guess a little bit of what you are going through as I was given Percocet, also an opiate, at the beginning of  my treatment.  It had such bad side effects that I decided to stop it, without knowing at the time that I should taper away the dose.  I had a few such terrible nights that I really felt like doing something desperate.  Is there anything that your doctor can prescribe that can transfer the dependency, so to speak, from the fentanyl to something else which can then be tapered off, while you try yet another solution for the pain?  I may be talking out of my hat as I am so new to all this business, and you of course have been enduring this for years.  Had there been another solution, you would probably have found it long ago.  It was very courageous of you to try the blood letting.  It was used for centuries, before modern medicine replaced it, but said modern medicine has also now come up empty-handed in our case.  Your experience with the acupuncture is very disappointing.  While I have never been a great believer in it, for "normal" pain, I would have expected it to have great potential against nerve pain.

When I was younger I was surprised to learn than non-drug addicts, people like you and me, that is, could become dependent on pain medication to the extent that special clinics, like the Betty Ford clinic were founded to help heal such sufferers.  Our PHN problem is that we are resisting such dependency while still urgently needing an alleviation of our pain.  One feels that science must come up with an answer soon.

Thank you for your positive remarks about the Lyrica.  I had been feeling that I am rather a lost case if I refuse to take anything that the doctors suggest (apart from the dipyrone and lidocaine, which I have continued with, although with very little benefit), so perhaps I will just try it out for a short while.  The thought that I am not likely to get addicted to it is very reassuring coming from someone who has tried it, rather than the doctor who is prescribing it.  Although having said that, the instructions say that it should be tapered off for a minimum of a week.  Perhaps that is true of most longer term medications. 

I do hope you will soon find real help with either the fentanyl or a useful substitute that can solve the problems of availability and over-tolerance.  And we'll keep a watch out in case the cryogenic treatment becomes feasible.

All the very best,

Pamela

It is really horrifying to think of all the treatments you have tried without success.  I think the drug companies are failing us big time in this regard.  Several of the medications are designed for other problems and by chance have been discovered to help some people with pain relief, but they were not originally the target population.  Given the huge cost in mental, physical and financial hardship that shingles exacts, I am sure it is time for research into treatments  specifically aimed at PHN sufferers. Far too little is said or publicised about this disease.  I for one knew almost nothing about it, and I try to keep myself well-informed.  Most of my friends and aquaintances needed to have it explained to them, yet they have all had chicken pox in childhood, so many of them are at risk of getting it one day. A partial solution for them might be the vaccine but it is difficult to obtain in many place although the British NHS offers it to elderly people.

I wonder if you or any other members of this forum have noticed the influence of some things we eat?  I find that if I have coffee or chocolate or even more sweet things than usual, I often have even more pain and itching than before, so I have learned to avoid them if I can muster the willpower.

I am interested in trying any and all mechanical means of defeating this pain, so would go for the spinal chord stimulator if I can obtain it.  But I understand from you that it didn't help you, so I suppose it's a gamble like all the other treatments, and probably a pretty nasty procedure too.  Oh for a way out of this torture, for us all.

Pamela

First sorry to hear about your pain and the suffering that comes with it.  I am aghast that it was so misdiagnosed.  One has to wonder given shingles is relatively common how that continues to happen.  The type of pain is fairly unique to each person but there are similarities from what I have read and discussed.  First make sure you really characterize your pain for your doctor.  I know we dont want to dwell on talking about pain but it is important to characterize it in terms of what it feels like, intensity, duration and frequency.  It is your life and it is important to talk about pain in those terms to convey the seriousness of it.  I found two types of pain - deep flashes of pain - tends to be more readily controllable and also more bearable given it is flashes of pain that goes above 8 on the 10 pain scale.  However the real suffering and life altering pain is the surface pain.  Typically triggered by light touch, clothing being a major factor and also wind in some cases.  It becomes unbearable and just doesnt go away once triggered.  For me the area is well defined - doctors have used a camel hair bruch and it goes from pleasant to agony within 1 millimeter of going into the area.  A firm pressure on the skin in that area is fine - it is the slight touch that triggers the pain receptors.  That is what I can offer at this time.  That was also the technique one pain specialist used to demonstrate the impact of shingles and the resultant PHN to her students - with me as the "model".  If you have any other questions feel free to ask.  I am still looking for relief and have two additional options at this point.  Unfortunately the pain medication (fentanyl) is losing its effectiveness in providing some control.  Given you are one year in there is hope that it will wain as time goes on.  Continue to look for treatments that help - getting additional pain free or pain tolerable hours per day is what one strives for.  jim

very best of luck with the surgery, and with deaf eating the dreaded PHN!