Anyone have depression with PHN? I'm a retired psychologist with 26 years of PHN in right eye, forehead and scalp. I have nothing to gain [not looking for patients, I'm retired after 40 years practice]. I have learned very helpful ways to manage depression and PHN, and have worked with many patients with chronic pain and depression. If interested, let me know. I hope I can point some people with this difficult condition in a helpful direction that will improve their lives.
Hi Charlie
That's very nice of you, why don't you volunteer at a pain mgr in a hospital
givng your name to help PHN patients
God Bless you
PS Veterans Hospital would love you
At this time, I don't volunteer because it would require my maintaining my license, which is expensive, and continuing to purchase malpractice insurance, also expensive. I prefer to use this venue.
Understandable Good thing your doing
Paul
I do not have depression yet, but unless I find ways to manage PHN and manage this pain and somehow get a social life back, I could see depression in my future. I have only had this for 7 painful months, but it doesn't get better. I try to keep up exercise and stay positive but it's hard to explain to friends that I am not over this yet. I am 83 and otherwise have lead an active and social lifestyle. Am going to start yoga for pain and meditation. Any other ideas to prevent depression? Pain pills don't work, the only temporary relief I have found 4% lidocaine cream.
There's no question about it, pain for the rest of your life is depressing - the word depression doesn't cover it. More like insanity, life is really not worth living. I'm in my second year and have it in the nerves of right occipital, the right side of my head. Headaches all the time. Wake up in the morning with a headache, go to sleep at night and it's the same. Gabapentine (an anti-depresssant) doesn't do anything other than make you feel better about having pain. As time goes by you feel better about having the pain and it becomes possible at times to forget it's there. I noticed a difference after one year. So that's my situation Charlie, can you give me some idea of how you might be able to help me? I'm listening, as I'm sure everybody reading this is listening. How to contact you? Emails are not allowed in this forum.
In the first few years after my PHN began I became very depressed. It seemed that nothing worked, and no one understood my pain. Docs had little to offer. When I caught myself thinking thoughts about suicide, I decided I had to do something to manage pain and emotions better. Suicide is not an option, because it would badly hurt those who care about me. So I did 3 things:
1. I got on antidepressants and they helped. Antidepressants are PART of the solution to depression. The newer ones work way better than the tricyclics [amitriptylene is a tricyclic], and they have far fewer side effects. Most people notice few or no side effects.
2. I went to my drug store and tried every topical cream they had until I found some that worked. I found 2: Lidocaine gel and Aspercreme.
3. I decided to practice what I preach to my patients: Use cognitive-behavior therapy [CBT] for depression and anxiety. This involves changing thoughts and behavior. Example: I changed these thoughts, "I can't live like this...This pain is ruining my life...No one could tolerate this pain," to THESE thoughts: "I can live like this, it's just more difficult, and I have to find a way to live well with pain"...This pain is really hard to live with, but I WILL find a way to have a good life even with this pain...People do tolerate this pain, and I'm tolerating it, I'm just not doing a very good job of it, so I need to get better at it."
When I began changing my thoughts, my depression really began to dissipate. I still practice these thoughts now, 26 years later, and they help, a lot!
Why does this work? Because of something few people know: It's not events [like PHN] that cause emotions, it's the way we THINK about those events. If we think hopeless and depressing and self-critical thoughts, we get depressed. If we think TRUE AND HELPFUL thoughts, we get less depressed/anxious/angry. Those are my 2 rules for a thought to be healthy: It has to be 100% true, and it has to make you feel better, not worse.
So, I chose CBT for my patients, and for myself, because there is a mountain of evidence showing it is the most effective therapy for such emotions.
I can honestly say today that I have a great life, and rarely experience depression, even though my PHN continues.
By the way, my PHN symptoms have lessened, a little, with time. But my mood got lots better before that happened. Because of CBT and antidepressants, and Aspercreme.
OH! Yoga and meditation: Great! Very helpful. Meditation meshes well with CBT, because you become VERY aware of what thoughts are bouncing around in your head. Exercise: Very effective with depression and anxiety, a powerful tool in my box.
THANK YOU so very much. It is only people that have gone thru this that can understand what we are dealing with. Your advice is the best therapy I can imagine. I hate the thought of anything invasive. I will follow your advice and I know I can do this. Thank you again!
Ron: I'm having trouble getting replies to post. They may be too long. So I'll try breaking the response up into 2 or more parts. Bear with me...
Ron,
This is part one of my response to you. Part two will follow.
Good to hear from you, glad you are interested. I also have PHN in the right occipital area: Right eye, forehead, and scalp. We're twins!
So, please read my response to Ruth, about antidepressants, lidocaine gel and aspercreme, and cognitive behavior therapy [CBT]. It's interesting that you experience a headache rather than surface skin pain and itching. So, it sounds like you feel pain sort of inside the head? PHN affects different people differently.
One thing that took me a long time to discover is that hydration has as huge effect on my worst PHN symptom: Itching. I used to wake up with blood all over my pillow, from scratching my scalp open at night. I did lots of things to control this, some of them funny now that I think about them: Like going to sleep with my hand tied to my leg! [I just ended up using the other hand]. I've now discovered that the severe itching occurs when I'm dehydrated! I might only be a little dehydrated, but it sets off the itching. Now, I try to drink more water, and if the severe itching starts I immediately drink a whole 16 oz glass of water. Then it takes about 30 minutes to alleviate the itching.
So, you might try improving hydration. It's cheap, and won't hurt you. If it helps a little, yahoo!
Ron: this is part two of my response:
Your message shows me you are thinking some of the same things I used to think: "Life is really not worth living...Gabapentin doesn't do anything." All PHN people I've met think these things, at least in the first year or two. Trouble is, they create depression and can lead you toward suicide thoughts, then the depression magnifies the pain, and the pain magnifies the depression: Big snowball effect.
I would start by starting a frequent assessment of your own thoughts. Once you "catch" a thought such as those above, write them down and then determine if they are healthy thoughts or not. This is done by seeing if the thought satisfies 2 rules:
1. The thought must be 100% true. Not 97% or 99%, 100%. Because if it isn't, you really are lying to yourself, right? We all do it at times, but lets not think untrue thoughts about our pain, so we can make progress.
2. The thought must make you feel better, not worse. Because, why would you want a thought in your own head that makes you feel worse rather than better? Once you have found an unhealthy thought [I would argue that the two I've noted fail at both rules, and if they fail on either rule, they are unhealthy], now it's time to change the thought so it's 100% true and makes you feel better, not worse. You have to come up with this on your own, but I might suggest two replacements for the two thoughts.
1. Instead of "life is really not worth living," I might change it to "Life is worth living, but right now it's really hard for me, so I'm going to work hard to improve my pain management and my mood."
2. Instead of "Gabapentin doesn't do anything other than make you feel better about having pain," I might change it to "At least the gabapentin helps me a little, now I'm going to look for and find other things that help, even a little. The little improvements add up."
Now, once you have a replacement thought that you think is healthy, test it again with the 2 rules. If it passes, it's healthy, so run this thought through your mind, a lot. If it fails, then alter it again until it does pass the 2 rules.
Sorry this is so long and involved, but it does take some time and effort to get people to change thinking. This method of CBT, known as "cognitive restructuring," seems complex at first but becomes easier with some practice.
Please let me know how all of this works for you, Ron. I expect you might run into some roadblocks, like most people do, and I'd be happy to help you out with them.
Yeah, it does seem that most others, even docs, don't really understand PHN and how extreme the pain can be. So, it works best if PHN people can help each other, and also use medical and other assistance when it's helpful. Glad you find this helpful. Please get back to me, and the others who are reading this, and tell me what works and what you're having problems with. Read my messages to Paul, as they go into CBT in more detail.
Oops! I mean my message to Ron, not Paul.
Hi Charlie and apologies for lateness in this reply. Thanks for these pointers to restructuring thoughts for the better. What it comes down to is looking at the thoughts to see if they are okay or not, if the thoughts have this quality of wholesomeness - it's a good word isn't it. A buddhist monk introduced me to that word and I've been considering it for a while. Your CBT is more of a guided self-analysis and I'm grateful for that Charlie. Ah well, I had the injection in the right occipital nerve the other day, and the pain is better but not as good as the last time. This is my third injection over a period of 6 months or so. The neurologist says I can go on having them but if it stops being effective, the next step is nerve ablation. So that's going on at the same time as the investigative self- analysis. So how are you managing yourself?
Ron,
Glad you find the initial concept of CBT/cognitive restructuring fits with your idea of "wholesomeness." Yes, I like that way of evaluating thoughts also. Buddhist teachings focus a lot on our patterns of thinking. Thoughts being the basis of most emotion is not a new idea, but mental health professionals have made use of this by developing useful techniques to apply it...like cognitive restructuring...that really work well.
I used to work in a pain management program in Denver, and have 25 years experience in medical rehabilitation work as a psychologist. I am not a physician, but I would be very careful in considering nerve ablation. I have never met a pain specialist MD or pain anesthesiologist who was willing to use it with PHN. Nerves do not remain ablated, they grow back. I would be looking for second and third opinions from independent sources regarding nerve ablation, Ron.
In my experience, and my reading of the research with chronic pain conditions such as PHN, pain management seems to be the way to go, rather than trying to "cure" or rid oneself completely of long term pain. If such treatments as nerve ablation worked well, they would be in common use with PHN. They are not. Nerve injections also are a temporary and partial solution.
How am I managing? Quite well. Though my pain and itching are still very pronounced, I can honestly say my pain is an annoyance rather than a disruption of my life. I do not use any prescription meds or treatments, though some of those can be part of a solution to managing PHN. I have seen fair results with others with use of gabapentin and Lyrica. Personally, I use Aspercreme and cognitive restructuring. I do take an antidepressant since my PHN began, and this along with the cognitive restructuring really control mood well.
So in "pain management" as opposed to "pain treatment," the goal is not to rid onself of pain [because it is acknowledged after some effort that this is not possible]. The goal becomes one of living well with pain. That seems a hard pill to swallow at first, but when I see people make that jump, I see them doing much much better.
Thanks again for your advice, something we value since you're in your 25th year of pain, you could write a PhD thesis on the subject... I have to say I'm still struggling with a kind of denial it's there. Now going into my second year of constant headache, not serious scratching that'd draw blood, it's the pain inside the head. And the fact is I've not completely accepted the fact that I'm stuck with this for the rest of my days. So it's this, the reluctance to just have it there in my life - be with it. Even though I understand what you're saying, and there are times when I see it as pain management, there are still these thoughts that come crashing in and it's pain treatment I'm after, how to make it go away, etc. These kinds of thoughts are not constructive and I hear you saying sort out the helpful and unhelpful thoughts, CBT. It's the way to go, I can see that, just haven't got the priorities organized. Maybe also because I'm taking a high dose of Gabapentin, 1800 per day and often it's more than that. The drug makes it confusing sometimes, can't seem to focus on things that are easeful, the dark thoughts that don't do anybody good get hold of me, and one by one I have to push them aside. Even so, it's really good that you've entered this forum Charlie and we can all say you've been there, got the Tshirt. Yes it's helpful, thanks
Hey Ron,
Thanks for your reply, and the nice things you say! I remember what it was like for me when I was about 2 years into living with PHN. Not easy! As I said before in this forum, I had some real problems with severe depression. As others have pointed out often, it's even more difficult when people don't get it that your pain is continuing and is severe, because there are no outward signs. From their point of view it seems like we're exaggerating our pain or maybe wanting attention. From our point of view they seem unsupportive or maybe uncaring. So having this forum provides some level of support from those who, as you say, have earned the T-shirt!
I found it very helpful to have a therapist to talk to about my PHN back around that time. Despite what people sometimes say about therapy, most people get better and feel better after just a few sessions, and that is backed up by rigorous research on outcomes.
Depression magnifies pain, which then magnifies depression, and the snowball continues to roll. So, it's important to defeat depression using all means necessary. At best, depression makes life unpleasant, and at worst it can kill us. It's a really bad roommate to have.
Personally and professionally, I recommend finding a therapist who specializes in CBT. You can screen therapists using the web. Just do a search on "CBT therapists." You'll find sites that allow you to plug in your zip or city. Then you get to read nearby therapists' descriptions of their approach to helping people, as well as their photo and a list of the age groups and problems they prefer to work with. It's not that CBT is the only way to go. There are many therapists of other orientations who would be helpful. But the research in rehab psychology has supported CBT as the most effective orientation for medical issues at this time.
It's clear you're really having trouble with PHN, and that's actually pretty normal at this phase of the disorder. I don't want to see anyone go through more than they have to with this difficult problem, so I hope you'll follow my advice. Please continue to let me know how things are going.
P.S.: Please remember always that PHN lessens with time. It's easy not to believe that, as it happens so slowly, over years' time. But, it does. The important thing now is to find ways to manage it so its effect is lessened, in the present.
And, to everyone with PHN [and those who have not had it]: Please get immunized against the zoster virus [the chickenpox virus, herpes zoster]. While it is not common, you can get it again! The immunization decreases that chance. I hear there is a new immunization that is more effective than the older one, and this might be worth checking out. But either one helps.
I had shingles in summer of 2008. The PHN lingers. Any suggestions would be welcomed.
You have had PHN much longer than I have . The initial bout was just 6 months ago. For three months after the rash I had horrible deep pains. I must say those are gone. I am left with the awful burning, itching pain. I covers a large area of my right side, underarm (the worst) and back. Impossible to wear a bra. Pain meds do nothing. Deep breathing and meditation (what I call focusing on pleasant things, sort of) , any distraction helps. Trying not to dwell on the fact that this may go on indefinitely help also. Strangely, rubbing a cool wet wash cloth over the bad spots , air drying and applying 4% lidocaine creamy (available over the counter) gives some relief. The skin over the previous rash area is sort of irritated and pimply. Does anyone else notice this? Does it go away with time?? I too, would like more ideas that help others