Depression with PHN?

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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.

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  • Posted

    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

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    • Posted

      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. 

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  • Posted

    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.

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    • Posted

      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. 

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    • Posted

      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!
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    • Posted

      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. 

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    • Posted

      You present some very positive advice for ways to deal with PHN. Some of what you write are methods I am currently beginning to use to help me live with my severe PHN pain. You are right that when I am diligent about practicing relaxation techniques and concentrating of positive not negative thoughts, I can function much better. It's just that it is difficult to change me mindset sometimes from pitying myself and feeling hopeless to being

      more optimistic. I know that for me pain killers and drugs are not the anser so unless I want to live as a shut-in crying all the time, I must focus on alternative ways to regain my normal life. Thanks for your wise advice. 

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  • Posted

    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.  

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    • Posted

      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...

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    • Posted

      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!

       

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    • Posted

      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. 

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    • Posted

      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? 

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    • Posted

      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. 

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    • Posted

      Hi Ron:

      What is a nerve ablation?  My friend had a cardiac ablation last year which effectively terminated his decade-long Arrhythmia attacks.  I have never heard of a nerve ablation before and would like to know what it is and what its success rate is in fixing damaged nerves for people suffering PHN. 

      My PHN pain started in Oct. 2016.  Pain is extremely severe at time, especially on very cold days (outdoor temperature at this moment is minus 11 degrees Celcius).  Have tried practically everything under the sun: prescription drugs, nerve blocks, acupuncture, oinments, cannabis oil, etc. but nothing seems to work except for a prescription sleeping pill which knocks me out and gives me 5-7 hours of sleep without pain.  But this sleeping pill has a lot of damaging side effects, so I try not to take it more than 3 times a week. I have gone a day or two without any sleep at all due to severe PHN pain.  Fortunately, I don't feel depressed yet as I have always been a happy person.  My remedy nowadays:  Watch my diet carefully and try to eat foods known to be good for nerve health.  I do 30 minutes of exercises every morning (whether I had any sleep or not) and just concentrate on my routine and ignore the PHN pain.

      I also keep myself busy mentally which helps a lot as I feel no pain when I'm preoccupied working on a project. 

      Many thanks to all the people who offer positive solutions in this forum.  I find your comments most helpful.

       

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    • Posted

      Sorry, I made a mistake in my last replay to ron96331.  I meant to say catheter ablation and not cardiac ablation for Arrhythmia.
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    • Posted

      Nerve ablation is a procedure in which a specific nerve, in this case the one that serves the area that is painful, is destroyed.  I do not know of examples of its effectiveness with PHN.  It's used pretty rarely.  The nerve does re-grow eventually. 

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    • Posted

      The way I understand it is, nerve ablation is an electric charge delivered to the nerve that is causing the problem. The ablation stuns the nerve or may destroy it completely, and that is supposed to get rid of the pain. The difficulty is (I've heard from others who've had it done), the nerve grows back again and the pain then may be in a slightly different place. Even so, it could be worth a try, I'm thinking of it now because the four nerve block injections I've had over the last 6 months have not given me much ease.

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    • Posted

      Considering nerve ablation, a question I would want to ask my docs is this:  If the nerve blocks provided minimal relief [and nerve blocks stop the nerve from functioning], why would killing the nerve do better? 

      I used to work with anesthesiologists specializing in pain management who were trained in this.  This was during my initial onset of PHN.  They talked to me about both nerve blocks and nerve ablation, but they were not gung ho about doing either procedure.  They said the nerve blocks would provide relief only temporarily, and the nerve ablation would do the same since the nerve grows back.  They did mention the possibility of the pain quality being altered once the nerve grows back.  They were not sure if it would be better or worse. 

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    • Posted

      Nerve block only worked well for me the very first time I went to the Pain Clinic.  I had no PHN pain for about 10 hours immediately after injections of Marcaine in 3 areas: my upper arm, shoulder and neck area near where the affected cervical nerve #6.  Each time, the injections raised my blood pressure quite a bit, from 140 to around 169. Always, I had to sit and wait for 30 minutes at the clinic after the shots.

      Subsequent trips to the pain clinic for nerve block injections became less and less successful, from 10 hours to 4 hours to 2 hours and to no relief at all.  After 2 months of getting nerve block injections once a week, the injections did nothing for me other than raising my blood pressure.  It became a total waste of time and gasoline driving there.  The only good thing was that the medical cost of nerve blocks was 100% covered by our provincial health insurance plan.   

      Since nothing else has worked for my very severe PHN pain, I'd like to give nerve ablation a try.  If the old nerve gets killed and a new nerve grows in its place, logically the new nerve can't be exactly the same as the damaged and destroyed nerve, it has to be better!  It may be a weaker nerve, but it shouldn't cause pain, right?  The C6 nerve runs from the thumb, up the wrist, forearm and upper arm to the neck - cervical 6.  What does the doctor do to actually kill the damaged nerve?

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    • Posted

      I think there are several methods of ablation.  One is to inject the nerve with phenol, but I have heard of electrical ablation.  You should ask your docs about this.  The procedure is not often used.  That alone should tell us something:  If it worked really well, wouldn't it be used frequently? 

      I understand your logic, and it seems like things would be better.  But, it's not at all guaranteed that the nerve will be better.  Think of amputees, whose nerves usually generate phantom pain after being severed.  Again, you probably should talk with your docs about this, and ask what their success rate is, and how they define success. 

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    • Posted

      I read up on more PHN treatments, e.g. "Transcutaneous electrical nerve stimulation for chronic post-herpetic neuralgia". I also read up on intravenous Vitamin C treatment. Here is one article with reference to IV Vit C treatments: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111558/ Administration of Vitamin C in a Patient with Herpes Zoster - A case report -

      As I still have very severe PHN every day, I think I will ask my family doctor for a few grams of IV Vit C, may be 1 or 2 g for a start, once a day for 5 to 7 days to see if there will be a reduction in my PHN pain.

      I'm already taking lots of Vit C and B12 supplements in pill form every day, but haven't tried IV Vit C yet.  Will report back if this treatment works.

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    • Posted

      Thanks for contributing.  I read enough of the article to see that they were not treating PHN, but treating shingles.  The patient had only had pain for 10 days.  So, sadly, this article probably does not apply to PHN.  Also, this woman had the pain for 10 days when they started therapy, then had relief after the vitamin C treatment.  10 days is about when you'd expect the pain to begin to decrease anyway in a shingles episode.  So it's not at all clear that vitamin C was what gave her relief. 

      Sorry to rain on the parade.  I guess you could try the vitamin C anyway if your doc is willing, and see what happens. 

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    • Posted

      Charlie,

      Thanks for your message about drinking more water. I have begun severe itching and I did notice that I have not been drinking as much water as I used to before I got shingles and PHN. I will increase my water intake. 

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    • Posted

      Charlie,  I had to write to tell you that your theory about dehydration is right on!  I have been testing that out and by golly it works for me.  Some times late in the day the itching seems worse so I tried a big drink of water and it seems to alleviate the itch.  A question I have had about this whole nitemare is - everyone almost says that they are resigned to this for the rest of their lives.  Is there not some hope that it could go away eventually??  I keep holding that hope.  Maybe those that find it goes away don't read these postings anymore??  Just a thought!  I am an optimist !!

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    • Posted

      Woohoooooo!  I am so glad that the hydration has worked for you too!  And what a great treatment:  It's free and has no side effects beyond having to go to the bathroom more! 

      I've read some comments on this site in which people say their PHN has gone away after some time.  So, I think it happens for some, but obviously not for all of us.  You're right that if someone's PHN has gone away, they are less likely to post here because they're busy with other parts of their lives, so we may not always hear from them. 

      Hope:  It's good and bad.  If you frequently occupy your mind with hope that PHN will go away, you will be disappointed and sad when it doesn't.  So, oddly, hope can lead toward depression! 

      My mood got a lot better when I stopped hoping it would go away, and just focused on managing it better so it became a smaller part of my life.  Obviously, if a "cure" comes along, I'll jump right on it.  But I'm not spending my time hoping for it, I'm out living my life, and doing what I can to minimize the pain. 

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    • Posted

      Gabapentin is not an anti depressant. It is an antiseizure or anticonvulsant medicine. Just an FYI😁

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