Cognitive Behavior Therapy [CBT] for PHN people

Jeaneen things can change. I'm lucky in that I saw even infinitesimal improvements in the first few months which made me optimistic. That's a good sign but I'm in another PHN group and some people see improvement after years. I don't think it's from treatments or surgeries, the nerves just settle down. Until then I do believe that there will be ups and downs, as there are for me. But overall, I've got much less pain and I have to keep remembering that on my bad days. Also, I'm tapering off the gab and several of us have felt that it didn't help, in fact may have increased our problems. Good luck!

Jeanine,

Babs is right that things change.  Don't think in terms of months, but years.  That's why it is SO important to find ways to better MANAGE the pain, rather than expecting decreases in pain and constantly looking for that.  My pain didn't decrease for many years.  But, I did get my depression under control, and that decreased how much the pain bothered me.  Odd huh?  There's pain level, but then there's how much the pain bothers you!  That's called the "suffering" index.  If we pay attention to the pain, it seems to increase.  It doesn't really, it just is magnified.  If we learn ways to distract [like you are doing with HG TV], it seems to decrease.  Also, the way we think about our pain magnifies, OR MINIMIZES, it.  That's what CBT focuses on. 

I'm happy to still be out here!  You are welcome. 

Welcome back, I see you're out of the purgatory of "being moderated". I can never understand why that happens. I'm sorry there's not been much improvement. We'll keep hoping that changes.

I have a real dilemma with the CBD, so many people who didn't want to try it have and found some relief. But I don't want to switch to a different drug, legal or not. I'm lucky that my improvement doesn't make it an issue. I shouldn't judge this way, but I'm in some groups where it's obvious that a few people are posting while being impaired by their legal/illegal drugs. One person would have such run on sentences I felt like writing, Dude, wait until you're not stoned so we can figure out what you're saying!

I don't drink either, I hate that buzzy, "relaxed" feeling. I prefer just chilling with a good book, movie or beautiful view.  Distraction is everything.

When you say you tried CBT, what did that consist of?  Were you using a book, or seeing a CBT therapist?  What specific changes did you make?  

I would not agree that “this is as good as it gets.”  PHN does decrease with the years. For a long time with mine, I could not tell if I was managing it better or it was decreasing.  It turned out it was both. 

Sorry Ruth I have nothing regarding Botox and PHN, but that other drug is similar to Gralise, also time-released gab. In all honesty, I wouldn't take any of the three. I HATE what this drug has done to my mind, memory and cognitive skills. I've been tapering for 19 months, and will still need about another 8 to get off it. CBT isn't magic. Today, I've been having a tough time recently emotionally with what my brain's doing. With my therapists help I've gotten better at moving on and finding ways to help with the frustration and despair. "It's only for today", "It was different yesterday" etc. It's still a battle, and I forget, but it does help.

I did some searches also. This was a very limited study (9 patients, and another done with one patient. There was little follow-up and no control group.)  "Considering the present and some previous studies done on the effect of botulinum toxin in patients suffering from PHN, it seems that there can be a decrease in pain in the first week. However, analgesic effects of botulinum toxin decrease gradually as the weeks pass by. Overall, the pain is less and more tolerable when compared to pre-treatment period. This problem was reported in all studies. Due to the low number of available eligible patients, control group was not included in this study and it is suggested that a random clinical trial should be performed in which a group of patients receive placebo so that the analgesic effects of botulinum in the treatment of PHN can be better evaluated."  Several other articles, also from 8-10 years ago show it may help for a few months and then become less effective.

Thanks Babs and Charlie,  that is sort of the same info I find in checking it out.  I have a son-law who is a toxicologist for a major drug co and a daughter in the med field and they are checking it out as well.  Yes, we are all grasping for help with drugs, bras (sorry Charlie) and anything that could help this pain!  Thank goodness for this forum to hear other opinions.  Thank you for responding. Will keep you posted.🤔

Charlie ya don't want to know, but at least it's one problem you don't have!! Good luck Ruth. I almost said, give it a try, who knows, but for that cost and knowing by the nature of the product, if I understand it (as it's used for "facelifts", as the toxins decrease so will their effect. You don't have to answer this, but I imagine the gab problems and conversations with your s-i-l are NOT something you have.

I'm just checking in here. Charlie, I've shared the ideas behind CBT in a Gab group I'm in. I'm sure you know that the emotional and psychological problems of gab are as or even more challenging than the physical ones.

Personally, I'm doing OK, having ups and downs with both my PHN and my gab tapers, but I'm down to 600 mg and plan to drop another 100 this weekend. At the lower levels the taper is harder and that last one was tough, even though I wait 8 weeks between drops. This time I'm waiting 10 weeks, just so I'm stable longer. I hope you're all doing well.