PHN Pain Triggers

Well I see your comment, so I'd say, sure it is, welcome! I'm at one year and I found it very interesting. Some of these triggers I have, some I don't but every so often something new sets it off worse and I remember that this happened to someone else here. It helps me feel less freakish and alone LOL.

I didn't use to think that materials or tight clothes set it off, but that was during the summer. Now that I'm wearing winter clothes, I have a lot of sweaters I can't wear anymore either because they "feel" too tight (they aren't) or they have some wool. I haven't had problems with wool for 20 years, and now 40% of my winter Wisconsin wardrobe is unwearable. I had to buy a lot of new summer clothes (TMI, but many of us can't wear a bra, you get the idea. I WAS going to say picture, but let's not go there.)

Hi. I haven’t been able to wear a bra for 2 years and can only what I refer to as “yoga pants”. Have to take 450 milligrams of Lyrica daily and oxycodone for breakthrough pain. Have also tried lydocaine patches. I rarely have a pain free day. Just started on a new antidepressant. Feeling blue going into my 3rd Michigan winter.🙁

Hi jeaneen,

May I ask what antidepressant you were on, and which one you are starting?  I'm a retired psychologist with PHN, and have some knowledge about antidepressants. 

Initially I took Cymbalta for over a year and it didn’t seem to help with my pain. Then I was on a low dose of prozac and decided to take myself off of it. Over the past couple of months I knew my mood was slipping. Tried Lexapro and had terrible nausea and diarrhea. Now 4 days on 37.5 milligram s of Effexor XR. I am a retired social worker. Last 11 Year’s  worked on a psych unit. I am 66 and took 1 med before PHN.

Thanks Jeaneen,

I asked because you said you were “feeling blue.”  Cymbalta’s effect on pain is subtle, and lots of people don’t notice any effect on their pain.

In my 40 years in psych work I saw that a very high percentage of people who said that antidepressants “don’t work for me” (for depression, not for pain) were taking inadequate doses or taking the med other than every day.  So I urge you to really work with your doc to get Effexor to help you. Effexor and most other modern antidepressants are quite helpful with depression when the dose is appropriate for that person. I think it’s good that you’re starting on a very low dose, especially since the Lexapro was problematic. It’s probably a good idea to increase weekly until you get a good effect. I don’t know if your doc told you, or you may know from your mental health work, that you probably won’t notice a good effect on mood for at least three weeks, and only when you get to an adequate dose for you, whatever that may be. 

I saw many docs who were overly cautious and never put people on an adequate dosage, then switched meds when they did not get good results rather than upping the dosage as they should have. Most of these docs were family or primary care docs, not psychiatrists. Unfortunately, all they did was teach their patients to give up. 

I’m hoping that in a month or two you’ll be feeling less down. My PHN was very positively affected by getting my depression under control. For me it was the start of my turnaround in managing PHN much better and having a good life again. 

Thanks for your thoughtful reply. I also have a long history of insomnia and have been taking Ambien CR for quite some time. Unfortunately now with the addition of the Effexor XR I am only able to sleep about 4 hrs at night. I am taking the Effexor in the am. Do you mind sharing with me witch antidepressant you found helpful?  Hoping the sleep will get better. And I so want to wean myself eventually from the Ambien CR. Trying to stick out with the Effexor XR. 

Odd. Effexor isn’t often known for creating sleep problems, and you are on an exceptionally low dose, but, everyone is different. Also, sleep problems are a symptom of depression itself. 

I found several antidepressants to be really helpful in my 27-year PHN history. First was Prozac, then Zoloft, then Cymbalta, and now for the last 10+ years Wellbutrin. In my experience Wellbutrin has been the best with the least side effects. Docs used to think it was not as effective as the others, but that has been shown not to be true. I’m on 300 mg XL, and may just stay on it the rest of my life. 

I also use cognitive behavior therapy (CBT) which is the most helpful of any treatment for depression. 

Thanks again. My shingles outbreak occurred in Dec 2015, after a series of family stressors and 2 months after I retired. I guess it is encouraging to know that you have been able to live/ thrive in spite of PHN for 20+ years. I have gone to see a psychologist here about a year ago and would certainly consider it again. Thanks so much for your responses. This game PHN can make one feel quite isolated.

Didn’t mean to refer to PHN as a game. Slip of the texting thumbs.

With effort over time you can get better at managing PHN. And it’s helpful to know that it decreases in intensity over the years. While it was severe at first, I can honestly say that now it is really just an annoyance. 

Yes, you are not alone. There are lots of us, and we can sometimes help each other a lot. 

I have a supportive spouse but my 3 adult children have had a difficult time accepting that mom is not the same. I have searched for forums like this site and never really found anything that seemed current. So again I so appreciate your responses. My pain has been debilitating. It presents on my right upper quadrant, encircles my trunk, goes into my right shoulder and arm. Unfortunately I am right handed. Anything requiring repetitive motion can be a trigger. Even brushing my teeth.

It is hopeful to think that the pain may lesson over time. You shared that u take Wellbutrin, do you mind sharing whether you have had to take lyrica or neurontin?  Or anything stronger for breakthrough pain. I would so love to get off some of these drugs someday.

And again, I so appreciate your responses. 

In my first few months I tried tegretol but found it not too helpful, and I was drowsy with it. So I decided to avoid oral meds and just use topical creams/gels. Tried lidocaine patches but found that lidocaine gel worked as well and was about 1/100 the cost. Eventually found Aspercreme and it’s been my mainstay. It works pretty well against itching, which is my most bothersome symptom. Antidepressants helped me a lot, by enabling me to work on my CBT and think differently about my situation. This made LOADS of difference. 

When I worked in a medical hospital we used neurontin a lot, but avoided Lyrica due to increased side effects and cost for patients. It helped some folks, but I’m not sure it’s worth it with the drowsiness side effect. It’s a personal decision. I hear lots of people here on these anticonvulsant meds who dislike them but feel dependent. 

Given my pain level anticonvulsants seemed 1st line treatment. Tried going off about a yr ago and pain increased tremendously. Lyrica definitely slows me down however. Thanks for sharing Charlie.

I HATE being on gab too. I've been dealing with this for a year, and I can say as difficult as the side effects are, it DOES help. It's important to keep the pain as minimal as possible. I also believe that PHN decreases, as I've seen it. Some days are worse than others (more activity or who nows why) but when I compare it to weeks or months ago there's a definite improvement.

Hi there. I actually take Pregabalin (Lyrica). My Dose has been increased over time. It took quite a bit of time to accept how tired the Lyrica makes me feel, I do think it helps control the pain.

Charlie and I have exchanged messages over the last couple of days and it is so helpful to communicate with others living with PHN- something I never had heard of until I developed shingles. I live in northern Michigan and it is now very cold here and I know the cold exacerbates my pain. Thanks for sharing.

Hi jeaneen,

I got shingles almost exactly one year ago in Nov 2016. It devastated me. 

I was left with severe PHN. It wasn't just the PHN that knocked me out but also how exhausted I felt along with many other negative symptoms like painful, numb feet, sensitivities to many foods and other things that never bothered me before. I had to quit my job as a college professor for six months. I was miserable because I couldn't do anything but sleep and lay around. I'm typically a very active person. However, the good news is that VERY gradually I am regaining energy and my life. I thought this time last year my life was over. But, gradually my pain lessened. It is a long recuperative process. Sometimes, I don't even realize how much I have improved because it's such slow improvement. It's just little things that I began to notice like I don't have to travel with ice packs now as I did. I don't wake up every couple of hours with my heart pounding and with what feels like knives in my shoulders. When I went back to work I was quite weak and didn't know if I could make it. But, again, slowly I regained strength. I have lasted through an entire semester without missing any work.

Don't get me wrong, I still have nerve pain, but it's more a discomfort now not a throbbing monster. Each week I notice a tiny bit more improvement. It's so wonderful to once again believe I can have a happy future. I take no pain meds at all. I have allergic reactions to most drugs so I have taken nothing. In many ways, although I have probably had to suffer more, I am glad I did not begin taking any of the drugs that were recommended because I would now have to deal with what so many people on this site say they are facing and that is having to ween themselves off drugs. I know for some people drugs are necessary, but for me drugs would just have made my body worse. 

Some things that help me are pure Aloe Vera gel and Cera Ve anti-itch cream. Also, I avoid all sugar and eat mainly protein, vegetables and fruit, small meals not large. 

I also try to sleep more and I practice meditation and relaxation exercises. I don't drink alcohol or caffeine. I see a counselor once a week. 

Don't feel alone. There are many of us struggling with shingles and it's after effects. 

Thanks so much for your thoughtful response. The pain I’ve experienced from the PHN terrified me, especially the first 3-4 months. While I began on Lyrica about 4 months in, I was very reluctant to take any narcotics, although to stay functioning I eventually did. I had just retired and likely would have had to take a leave of absence if I had still been working. More recently I have been able to back off on the narcotics, which is a positive sign. Per my PCP she will not recommend tapering the Lyrica until I have no breakthrough pain. I am 66, was reasonably active prior to November 2015. I have continued throughout to go for walks and over the summer ride a bike occasionally.

My pain is on my right side and encircles trunk, and goes into my right groin. Also numbness and tingling in the right side of my face.  Something particularly vexing is the hypersensitivity I have to fabric touching my waist. Allodynia. Cannot wear a bra and can only feel ok in wide waisted yoga pants. I don’t mean to sound self pitying. My husband had done everything he can to assist in trying to keep me more comfortable.

So good to hear that PHN can fade with time. Again thanks so much for sharing Tiffany.

Jeanneen, there's no crying in baseball and absolutely no judging here! We've all been there, that's why we come here. No matter how supportive our families are, they can't understand what we deal with. This may sound extreme, but someone here once said something that I've occasionally had to say: "My doctor said, 'oh, shingles, all the pain of cancer without the release of death' ". So if a doctor can say that, at times we may need to also. It stops people short, but gives them perspective.

On a MUCH more positive note LOL, I learned to make lists, either mentally or physically, to remind myself what progress I'd seen, as it's so incremental. Last week, I realized it no longer hurts to end and wash my face and it hasn't hurt to floss in two weeks! It's not the teeth, it's the pressure it puts on my back. Or when I realized I could use a sponge to clean the sink, and it didn't hurt, or I could actually start putting things back in my very light purse, as I could only carry it 90% empty. The biggie was when I realized I'd gotten thru a day without crying--dinner is when all 3 meds have worn off and not gotten to a good level yet, you're tired, hungry and maybe a little dehydrated. Like you, I'm not asking for pity, it's just what happens. BUT notice, that there is improvement!!!

For some people this stage is 6 or 8 months, or 18 months or two years, but it does get better. I tell people that I've gotten back 80% of my life. My shingles in my back and chest (almost no rash, so no anti-virals, we didn't know what was wrong) started October 25th.

As you mentioned, many of us were very active and in relatively good health. So to get a life-changing "invisible" illness was NOT in our plan, was it?

Thanks so much. So glad I found this site. I wondered if posting would be like placing a message in a bottle but that hasn’t proved to be so. You have all been so generous sharing your experiences. Another problem I have struggled with off and on for years is insomnia. I was sleeping somewhat better prior to PHN. Have been taking Ambien CR and it now seems to no longer as effective. Took Benadryl last night. Big mistake. Slept but very lethargic today. Just going through a rough patch. Thanks so much Babs.

I wrote in a different thread that I found it after pacing the floor at 2:00 in the morning, sobbing in pain. I thought the same thing you did, then people like Merry, David, Charlie and Shoelady were there. They're angels (and I'm NOT very religious), I could never have gotten thru without them. And I mean that literally.  Sometime check out Depression and PHN which is very helpful.

 

Babs are you comfortable sharing what meds you have been taking? I relate to your examples of not being able to bend over and even pain flossing your teeth. I went to my dentist several times before I figured out that the numbness/tingling in the right side of my face was related to PHN. Just about anything I do requiring repetitive motion can trigger my pain. And just sitting in a comfortable chair, my pain can flair. Again thanks for your generous sharing!

Sleep:

I’ll share what my PCP suggested about sleep. Use “Fast Dissolve” melatonin, 10 mg. The brand I use is Natrol. Let it dissolve in your mouth or under the tongue. It won’t solve all your sleep problems, but it does make you drowsy and it helps. No residual effects the next day for me. 

I can tell you, it's not a problem. It's hard to keep track of what I've posted in which threads. I started on Gab, but not soon enough. I had gone to the Walk-In clinic when we got back from our trip, when it clicked that maybe the pain I had two weeks earlier was shingles, But as I felt perfectly OK and we could barely see a bump we both agreed it wasn't. Well a week later, I was in agony, called back (after researching) and asked for Gab. He wouldn't give it, so I had to wait to see my doctor 3 days later, nice, right? I started a very low dosage, at my request as I don't handle meds well and I had NO idea how bad this is. SO eventually, I ended up on:

2700 mgs of Gab (it took about 6 weeks to get to that level, and I stayed at it for about 3 weeks, I'm now down to 1400, one year later). I take it with food, at breakfast, lunch and dinner. The directions claim you don't need to do that, but the side effects are MUCH worse for me on an empty stomach.

My usual prescription NSAID called Nabumetone (I have a screwy body that makes calcium deposits in my joints so I had chronic bursitis and tendinitis. That was the drug that worked the best for me 25 years ago and is still a life-saver). There's some research that NSAID's and Gab help both meds work better, so that was fortuitous. I take 750 mgs at breakfast and dinner.

Extra-Strength Tylenol. I started with two every 4-5 hours I was awake. Yeah, a high dose, but that was only for about 3 months. Now I take two only 3 times a day.

Aspercreme with 4% Lidocaine, which was also more often in the past, now down to 3 times a a day. I tried the patches, but as you can only use them 12 hours (and they're ridiculously expensive, I only used them when I was better and on the drive to FL.)

I am tapering off the Gab as I get every side effect listed I think, but several really affect me negatively. When I got down to 1500, my brain fog started to ease, then at 1400 I felt much more like myself. But I can only drop 100 mg every four weeks as I go through "withdrawal". That's not the correct term, but there are problems.

That was the long answer (of course) Short answer, Gab, Tylenol, Aspercreme and my prescription NSAD.

I also avoid things that increase the pain. It's just not to avoid the pain, it's to prevent the damaged, confused nerves from firing needlessly. I think of it like constantly hitting a bruise, that's NOT going to help it heal.  But once I started to feel even a bit better, I believe finding a physical activity you enjoy and makes you feel more "normal" is a big benefit. I started taking walks again, but it took about 6 weeks to work up to a mile. The big news is, I compete in Ballroom Dancing (hey, I'm 62 and took it up at 59, so I'm not great, but I'm improving, so don't get too impressed) and had to stop dancing for 5 months. Now I'm back at it and very happy. Oddly, I can learn new figures very well, but ask me to count to 20? Not so much!! I guess muscle memory and my love of it takes over.

Thanks so much for your reply. By Gab I assume you are referring to Gabapatin (Neurontin). Good for you resuming Ball Room dancing. It is another cold day here in Michigan but I am trying to talk myself into taking my sweet dog out for a walk. You sound like a very positive, hopeful person! Jeaneen

My PCP recommended “fast dissolve” melatonin, and it really is better than regular oral melatonin. I use 10 mg. 

Yes, Gabapentin. Then to top if off, I can only take one specific supplier of it (aurobindo). There ARE differences in generics which will be particularly noticable when dealing with a drug that works on the brain like gab or pre-gab. We're cold here to, in WI, but better than the last few days. I have no choice but to take our 85 lb/hound/lab mix 18 month old puppy. Otherwise he's incorrigible! I'm not really all that positive, but I've learn better how to be from people here, particularly Charlie in our Depression and PHN. His advice really does work. Plus I am so, SO much better than last month. I didn't think that could happen, but it does.