Update about how I'm dealing with PHN

Merry Juliana,

Thank you so much for your words of encouragement. I do know about the love Arginine, high Lysine diet and I try to follow it. Is it also good to stay on the diet for nerve pain as well as to prevent another shingles outbreak?

Since I live alone, sometimes I feel isolated with my nerve pain. My friends, although well meaning, just don't understand what PHN pain is and seem to think I should be living my life normally now that my shingles is gone. Sometimes, just communicating with others who have PHN is, in itself, a great positive reinforcement. I'm glad I have this site to give me a boost when I'm starting to feel down about the pain. I had to take a leave of absence from my job becasue of the PHN, so now I tend to sit and focus too much on my pain. I think dwelling on the pain also makes the pain worse. When I get my mind off the pain, I don't notice it as much. Do you find that taking your mind off the pain makes it seem less or is it just me? 

Just so ya know, even if you're married, as much as they try, they still don't get it, so that's a different kind of struggle. It is lonelier, so I don't want to dismiss your feelings, but it's not all sunshine and balloons with someone.

Hi Tiffany,

Yes, a positive outlook helps tremendously in living a positive life...my life has had its ups and downs...but, I was named Merry for a reason. I have an identical twin named Holly. In those days 1951 there was no ultrasound or fertility drugs. Surprise pregnancy, and surprise second girl. I am the last of five. My father asked Holly in the incubator if she wanted to be named Merry. She started wailing. He then asked me and I started laughing.

The point is that no matter what has happened health wise, I keep on fighting, and I maintain an optimistic outlook on life. I had a grade 4 spondylolysthesis L3-L5 and severe lumbar stenosis and was working, walking with a walker up to the day before my laminectomy/fusion. I had this for six years before I could find a neurosurgeon to operate on me. I couldn't take NSAIDs due to anaphylaxis so I took nothing for the pain. The relief was enormous with the surgery. I also needed C-spine surgery for severe stenosis. Excellent relief. I have much more strength in my arms and legs since the surgeries. Also, I am much more dexterous with my knives when cooking! (I stopped cutting myself with the knives lol)

I have had two strokes, one right side paralyzed, one left side paralyzed. I got alteplase the clotbuster each time. Unfortunately, the second time I received it too late due to the doctor's incompetence. I can walk and talk, thankfully, and laugh and be Merry.

I take medications to relieve the pain when I have recurrent episodes of Herpes Zoster, and I am on Effexor for Major Depression and PTSD and Topamax for migraine prophylaxis. Topamax, I am certain, for me, has helped prevent PHN, decrease the neuralgia during the shingles episodes, and as I have peripheral neuropathy, alleviated the pain from that. It has also helped with my depression.

I have PTSD from a violent first marriage in which he tried to kill me. I left him and never went back. I got full custody of my son, needless to say.

Sometimes the SNRIs can help with PHN and act synergistically with gabapentin.

I feel that while I am genetically predisposed to depression, the venlafaxine and topiramate help the herpes zoster pain, as well. I also use benzocaine ear drops when I have recurrent episodes, as it really helps to soothe the nerve endings on my ear drum and ear canal. You may find the lidocaine or benzocaine topically may help. Perhaps not with PHN....but worth a shot...

Where do you live Tiffany?

I live in Delaware.

Best Wishes

Merry Juliana

Tiff, I use the 4% Lidocaine cream--Aspercreme and it does help. I used the store brands to save money and they didn't work as well.

Hi Babs,

Thanks for telling me that even being with a husband doesn't mean that I would feel less alone in my struggle with PHN. But, I suppose I figurel that if I had someone like a husband there would be someone to help me if I got really sick and couldn't function at all on a certain day. Now, I don't even have anyone to bring me a glass of water if I'm ill in bed. 

I use the Aspercreme with Lidocaine 4%, too. I also use Aloe Vera lotion that I mix with Cera Ve itch cream. I use the Aspercream patches, also. I also use gel ice packs. 

Hi Merry,

I am sorry you have had so many health problems. You are a strong and brave woman to have overcome so many obsticles. I do use lidocaine.

I have not tried benzocaine but I will look into that. 

You asked where I live. I live in Southern California--the weather is good here most of the time. It's been 78 and sunny most of the week. 

Hi Gayleen,

Thanks so much for your kind words. I feel a lot better knowing there are caring people like you on this forum, who also have PHN, who make me feel less alone. 

You are so right that those of us with nerve pain need to find outlets for our stress and negative thoughts. Like you, I have pets. I have two wonderful rescue dogs who I have had for six years. They bring me great comfort. Without them, I don't know if I would be able to survive some of the lonely times I have felt since getting shingles and then the nerve pain. My little dog sleeps with me. I call him my nurse dog because he always seems to know when I am in pain and comes to me very concerned. Thanks for your positive thoughts. I send them back to you. 

I wish my dog WAS a stress buster! We've always had a dog, and our lost dog died last August. We waited until I was a bit better to get a new one. He's a really sweet rescue from Alabama, Chocolate lab/hound/etc. mix. BUT he's 11 months old, about 70 pounds, easy going, but of course a puppy. So there are times it's stressful and I've got to keep walking him--a tired dog is a good dog. But the bending to wipe paws or play ball with him is hard on me. We love him, and he's actually terrific, but one a recent really bad day, he was into things all day long.  He had a good 5 days, but today he's a bit squirrely-digging, grabbing shoes etc. Typical puppy, but not destructive.

That dork! As I write this, he's sleeping next to me, looking adorable, of course!  Gayleen, I'd take your snow over our rain. I'm in WI and we've had 6 days of gloom and rain. I like snow!

I can understand raising a puppy can be stressful. I remember because I raised many. One of my dogs I hae now was older when I found him, so now he is quite elderly--it's become a bit stressful with him bcause he can't walk well and he has other problems. It's hard to watch my dogs aging. But, they are so comforting most of the time. 

Hi babs,

Your humor and positive attitude are great for me to read. You and I do seem to be on a similar trajectory--both having a similar timeline with the shingles and PHN. You caputured the up and down nature of this illness well. I wondered if others experienced the same cycle as me--sometimes it's like two steps forward and two steps back. 

I had a couple of weeks when I seemed to be almost back to normal--the pain was still there but it was very bearable. For my birthday, one of my friends gave me a party and I felt really good at the party. I lasted from 5 to 11 PM and I was the life of the party. That night, I even made tentative plans for a trip with some of my friends to Canada for Christmas. Then, within a few days, the pain came charging back and I was in tears again. As I said earlier, I am beginning to learn more about how PHN affects me. For me anyway, stress/anxiety, not sleeping enough and not eating a strict, healty diet can cause my nerve pain to attack. Maybe part of the secret to living a normal life with PHN is learning what my triggers are that seem to make the pain to get worse. Whenever I overdue it--stay up too late, shop too long, walk too far or even spend too much energy cleaning my house, the nerve pain increases enormously. I have always been a very active person, always running around and doing more than most of my friends. Now, it's hard for me to live my "new normal," and have to pace myself. Learning how to live well with PHN is a challenge but I must be diligent because I do hope to get my life back sometime even if the pain never goes completely away. Warm wishes to you! 

Ironically, my good humor and good day went south a little after I wrote this. That 1.5 went up to a 3.5, no idea why and today I'm not at my best either. Do you also try to figure out what on earth you did to cause it? Sometimes I can tell I over-did it, other times, I just figure, who knows, quit obsessing! I did walk the dog as we finally had decent weather, but had to cut it short as I was too uncomfortable. (I still have a hard time saying "in too much pain". I don't know if I think it sounds too melodramatic or if I say that I'll be admitting defeat??) The worst part, like you, I thought it was time to drop down the meds in a few days as I'd had 4 good days in a row. Not now. Are you on any meds?

I've been able to keep working, but took two months off when I was first diagnosed and the pain was too bad. I only work 10 hours a week--two half days as a receptionist. But the sitting and typing are hard. As you mentioned, when it's quite and I still have to sit and type, it's hard not to focus on the pain. I'm a one-person desk so I get up and walk around every 15 minutes to distract myself. At home or if I'm out, it's obviously easier to ignore it.

Sorry you had a bad day after feeling in good humor. Yes. On days I feel in great pain, I do often try to figure out what I did to cause my pain to increase. 

I use over the counter meds and other alternatives to prescription drugs rightr now. You're lucky you can work. I guess sitting for a long time would be difficult, though. I am hoping so much I can go back to work. I am a college professor which is a very demanding job. I have to be "on stage" in front of an audience so it's hard to do that if I'm not feeling well. I don't even hope to be pain free anymore. I just want the pain to lessen so that it isn't such a main focus and I can live a more normal life. 

You're right that I have to pay attention to the small victories I have.

But, as I mentioned, I was doing well for a few weeks and seem to have had a relapse the last two weeks where I seem to be stuck.