I have been trying to keep track of possible triggers for my pain attacks. This might be a good forum to share and for others to share anything they might have noticed caused their pain to flare up.
The pain for me is on the upper left side of my face, forehead and scalp - so a pretty exposed area. These are some of the triggers I have noticed:
Dramatic temperature changes (esp cold to hot)
High winds
Stress (obviously)
Tiredness
Getting my hair cut/washing my hair
Sustained pressure on an effected area
Bright lights or glare from sunshine
What a good suggestion! Mine are a bit easier as it's my back and chest.
Lifting more than I should (which isn't that much, but I still forget)
Twisting my upper body and/or reaching during that
Yes, pressure on the back such as at the dentist or beauty parlor
Bending such as tieing shoes
NOT taking frequent breaks while sitting in the wrong position such as typing--this is a tough one at work
Forgetting to take my Gab/Tyenol and using the Aspercreme. I'm very lucky that my shingles was 6 months ago and i'm still getting some healing. I'm stretching out the med schedule but then get busy and forget. Then when the pain worsens, I remember.
Hi Geezee,
I have PHN in the same area, for 26 years. I would add dehydration to your list, for me anyway. I don't realize when I'm mildly dehydrated, but I get sudden attacks of very severe itching in the affected area. Drinking a large glass of water will alleviate the itching within about 30 minutes. The pain stays, but the itching alleviates.
Hi Geezee,
I have PHN on the right side of my face (scalp, forehead, eye, nose and cheek.) I've had it 5 years now and am just about to retire on medical grounds as a result of a heart condition.
While I was working (in a school) it wasn't possible to choose whether to go outside or not, so I wore hats with earflaps and covered as much of my face as possible with a scarf. Even a slight breeze caused pain, and cold winds were agony.
Forgetting to take a dose of Pregabelin (Lyrica) would have a bad effect.
Tiredness also makes everything seem worse: I can't decide whether I'm actually in more pain, or whether my ability to cope is just reduced.
Things that have helped me:
I'm having a fairly experimental off-licence treatment with high-dose capsaicin patches (Qutenza) applied every 3 months at a pain clinic. I've had to have my head shaved to apply the patch to my forehead, and I wouldn't have let them do that more than once if it hadn't been effective! You have to have your eyes covered to prevent burning, then they cut the patch into pieces to cover the affected nerves and leave it on for as long as you can stand it without burning. (In my case 50 minutes: I left it for an hour in December but my nose went into blisters which was really painful.) The pain gets worse for a day or so and I have to use ice-packs wrapped in a towel to soothe the burning, but then it improves a little. The effects last up to 3 months, and the aim is to switch off the nerve response. I've had 3 treatments and have just signed up for the fourth. It's an NHS pain clinic run by an anaesthetist. It certainly won't suit everyone but I was desperate.
Failing that, I try distraction when things seem really tough. I knit complicated designs so that I can't focus on the pain, or I watch films and read books with involved plots.
Good luck!
Mine is around the left lower side of my body. Mainly following the nerve root from my spine. Everywhere that my shingles outbreak was. The following makes my pain worse. Showers, standing, resting on the side where the side opposite of where the pain is (wierd). Hydration is important. Eating too much or extended stomach will cause this. Heat is a big one (when Im in the car) my back sweats. Basically I am better off sleeping and siting. I have MS too. That what caused the outbreak.
You're so right about fatigue or lack of sleep. It took me a while to realize that. I agree, I can't tell if the fatigue somehow allows the pain to worsen or if I just can't cope with it as well. I've got a big trip coming up in 3 weeks and working extra hours so luckily I figured out I HAVE to keep the stress level down as much as possible and take care of myself to prevent a flare.
Now if someone had only told that tooth that broke and now requires a crown! I'm hoping I don't need a root canal on top of that. Until then I'm realizing one of the few good things about all this is that the Gab is an anti-anxiety med. Otherwise I'd be a bit of a wreck now. I've had terrible experiences with dentists (couldn't hit the nerve to deaden it) so I'm justifiably very apprehensive when I go to the dentist.
I have it on the right side of the head, lesser occipital nerve. For me it's internal, meaning headaches, some itching on the scalp in that area but not much. Triggers for me are:
Stress of all kinds
Sudden loud sounds, piercing high frequency sound
Bright lights
Sustained pressure on affected area
Other than these it can just happen for no reason; deep stabbing pain in the head, lasting two or three seconds
Hi Babs,
About the relationships of fatigue to pain, stress to pain, depression to pain, anxiety to pain: Fatigue, stress, depression, and anxiety all increase our experience of pain. They tend to "magnify" the pain experience.
Part of what we do when we are having negative emotions is to focus more on the negative. Self-damaging, but it's human nature. When we focus on something more, whatever it is, it seems bigger and more powerful.
Now, instead of reading this and getting even MORE stressed, depressed, and anxious, use this knowledge in a positive way by turning the process around. If negative thoughts and increased focus on negative events makes our emotions and pain worse, the opposite is also true: Focusing on positive events and thoughts makes our emotions and pain BETTER.
This is strongly supported in psychological research. It works. Also, a good antidote to stress is meditation, or deep relaxation. Setting aside a little time each day to learn and practice these has a very good effect on our mood and our comfort. There are free apps that teach these.
So, PHN is a huge stressor, and for most of us it is one of the biggest challenges we will have in our entire life. We have to recognize the negative effects of it, but if we stop there, we just feel depressed and powerless [worsening our pain]. It's really important to take it to the next step and start finding what helps and practicing that every day.
To Babs and all others who are interested:
There is a fantastic article in New York Times today, 4/9/17, about making our lives better. It's not so much focused on pain as it is on generating a more happy and productive life, using simple techniques that are proven in scientific studies. The title is "Get Happy, Four Well-being Workouts."
I read another article a few weeks ago that was featured on the Huffington Post with similar info. I was able to find this one, thanks. In all honesty, I always have been a very pragmatic, a bit more pessimisstic optimist (plan for the worst, hope for the best) kind of person. The last few months, I've found myself finally falling for that Happy Horse blankety blank, if you get my drift.
If one IS a more positive person, it's much easier to make lemons out of lemonade. But if you aren't and you're in the midst of a very hard time, it's so difficult to re-think all of this. That said, I have purposely tried to find a little good in this every day. Such as, being on the Gab lowers my anxiety about a terrifying upcoming dental appointment!! LOL, but i'll take what I can get.
I never want to minimize what someone else is going through, but if possible, try and see a little light and don't get sucked down too deeply.
"This too shall pass".
I agree that focusing on the positive aspects of your life can improve your pain. I have always been a very positive, "can-do" type of individual BUT after eight years of enduring this horrible condition I fear that it is beating the life out of me!!! My daily existence consists of a drugs, lidocaine gel's, resting, more drugs, more gel's etc. Sleep eludes me and stresses are ever increasing trying to manage daily life being in a severely compromised state. HOWEVER, I seek out the little joys that make me smile and add them up throughout the day then express gratitude for what I am able to do. To all of you suffers, if you can find your way to a positive, joyful view of life it will ease your suffering. I take one day at a time and do not focus on the future, God bless all of you! 🙏🏼
Sheila, and all others on the site,
Thanks for your contribution, Sheila!
One very important thing to remember about PHN is that it does improve with time. Slowly, but it does get better.
Also, if you are having a great deal of difficulty coping with this condition, PLEASE consider the fact that you very well might be depressed. People always want to deny depression, which prevents them from dealing with it adequately. EVERYONE gets depressed at some point in their life. If it lasts more than a couple months, getting help will make your life lots better. It is painful for me, as a psychologist, to see people avoiding treatment when they need it.
I got very depressed early in my PHN experience 26 years ago. I got help, really worked on it, and that changed everything. Not only my happiness and ability to enjoy life more, but also my actual pain experience. I used therapy, antidepressant medication, and CBT.
Charlie, In my case the PHN has not improved and has actually become worse over the last eight years for two reasons: my body has become used to the meds and I do not wish to increase the strength again and had to have two surgeries:
1. Open heart surgery to replace valves (31/2 years ago)
2. Hernia surgery (1 year ago) and an abdominal repair were a morphine pump was removed the previous year which resulted in heart failure and pneumonia, also I bled out requiring a blood transfusion. My chest is still wired together and there seems to be nerve damage in the chest region and then other areas where work was done internally still causes pain that feels like nerve damage. The area where the original PHN started remains unchanged and the pain never stops, extremely painful and encompasses a large area from my left thigh/groin up to the left ribs in around of the right kidney. Depression is a problem for me as my existence is a complete reversal of the life I once enjoyed coupled with isolation. Still, after eight years I haven't given up!
Sheila,
Two questions:
1. Are you using Aspercreme? It helps to knock the pain down a bit for me and some others.
2. Are you getting treatment for depression? It is very treatable, and in my experience, usually fairly easy to treat. There is no reason to continue to be depressed, and depression always magnifies pain.
A few weeks after my shingles started I was REALLY down--it was Christmas and I lost so very, very many things I'd been looking forward to for months. Luckily my employer offered an EAP and I ended up calling them when I finally realized I needed help. I had tried to see a therapist that someone recommended, but there was a 6 week wait!! However, those EAP people were wonderful. Between their support and better pain management, this forum and understanding shingles and the meds, I could deal with it better. There is definitely a connection with Shingles and depression, then throw in the meds which can cause depression and it's a tough battle. I'm so glad that part is over, though I still get down and discouraged, it's less severe and for shorter times.
Babs,
I'm really glad you went to EAP and got such good help. Most people never use EAP through work. Other avenues to counseling are available whether you work or not: Community mental health centers are available to everyone in the US. Medicare and Medicaid pay for counseling. Most people think it will be really expensive, but in actuality most folks attend a few sessions and feel better. I went to about 4-6 sessions, then used CBT on my own to manage depression. I still have PHN, but I can honestly say I am a pretty happy guy. It's an annoyance to me now, not a life-stopper.
Your information is interesting. Thank you. I am still attempting to discover what triggers the severe pain. I have had PHN for 5 months and am wondering if intercostal nerve block or nerve root block could be a successful treatment? A Dr. Jason Attaman in Seattle offers this, and writes In his blog 90% success for total pain relief for 3 months with some people never having pain again after this treatment. Also, epidural steroid injections have been mentioned in my research. Do you know anything about these treatments.
I so hope you are able to get relief and I hope I can too. This is really tough stuff.
My Mistake was getting shingles at the height of the holiday season and before the end of the year. That's the busiest time of the year for therapists (Happy Holidays anyone?) and as I've worked in healthcare for over 30 years, including 2 years for a therapist, I know who the quacks are in town. I almost had to laugh, here I was in crisis, reaching out and the best she could do was offer me her first cancelation, which turned out to be 6 weeks later! My friend offered to give up her appointment with that highly recommended therapist, but as that was still two weeks out, I hated to do that to her. Thank heavens for supportive family member, friends and that EAP.
Hi Charlie, yes in fact I am using Aspercreme and have done for a long time. As far as the depression goes I have used medication, meditation, activity etc. I rather think it's more sadness than depression as I had to retire earlier than I had planned because of this condition. Also discovered that my mood is ofttimes related to how much rest I have had. Some nights the pain is so bad that it's hard for me to sleep. I have researched depression thoroughly and just don't seem to fit in any particular category. For me, focusing on the good things in life and being grateful helps me immensely.☺️
I too sought out therapy but it didn't seem to be for me. Therapist said there was nothing wrong with me which I tend to agree because I'm a very positive gregarious person. I was saddened to hear that you were stricken during the holidays, that is a shame. We all seem to have our sad stories about this horrendous condition but again, one day perhaps in the near future we will have help!🙏🏼