Shingles Support Group

I had my shingles on my face and scalp July 2, 2008. I had one outbreak in which the blisters healed in a week but I have had post herpetic neuralgia since. There are still large dark marks on my forehead where the blisters were. I took Valtrex for the virus and Medrol for the swelling, my eye was swollen and anti viral eye drops to make sure my eye did not get the virus.
So far my eyes are healthy. I take 100/mg Lyrica 3 times daily for pain with 600/mg Advil. I also got a homeopathic remedy called Neuragen. It was really expensive and only helps a little. I also have tried the lidoderm patches which don't seem to do much. The pain is too uncomfortable for me to sleep so I am on Ambien CR which allows me to sleep through the night. It is manageable and I have good days and bad. Hope this helps.

face shingles wow take care man-o man do not touch for scaring reasons. But why I posted a reply is for all who reads this I was taking the Lyrica 100mg 3x daily and reduced the intake and still it made my feet and hands swelll up like a cartoon, and now I have a small bladder problems (like peeing for a second or two) I no its lyrica related so all pay atttension to yourself while taking the lyrica, SOB too cause it helped my pain, not much but it halped and with PHN any help is good...........SPECSPEC

sorry hernjay i didn't even get to say you are a serious trooper with that stuff on your face, one thing I did learn that the scar tissue below the skin has to soften and that alone will give you a little relief but with your erruptions getting worse the scar tissue is getting thicker so prepare yourself mentally for a long time before you fell any decrease in pain. SPECSPEC

I too have it on my face & into scalp. 2yrs Aug/08. I was doing pretty well, dealing with pain. when it got bad I took 1/2 Percoset and I was okay. Since I am back from a trip to NY I have had a lot of pain and I don't seem to be able to get it under control. I just can't figure it out. I stopped all meds except percoset when needed...But I really though I was on my way to finally see my pain leave. WRONG. Good luck to you. I would like to be your friend and we can exchange views...God Bless. Dolores

I am so sorry that you are going through this. I had shingles in March in my right eyebrow and a few spots in my hairline and I am still in pain. I am currently taking Neurontin and really don't think it helps much at all, so i am thinking of trying something else for the pain. I am also taking alot of supplements that are supposed to help with nerve health. I really hope that you feel better soon.

My shingles was on my right rib cage--front and back. But just in case some of the same rules apply to this god-forsaken virus wherever it is on the body I thought I'd write a few things.

Could it be you are over 60? Age seems to make a difference in length of healing time. I am 65 into a 6-month case of rib-cage shingles with PHN. Shingles sure knows all the secrets of terrorizing a person. I never know from day to day just what vengeance it will enact in the way of various painful sensations.

I don't think you can "force" shingles pain to go away. Even when I laid in bed having taken 60 mg. of codeine the world was blank but the electric lightning from the nerves was still there. Step one is to work on not letting it get the best you. For me this is a full time, constant job. I tell myself I may have to live with this forever and anger and frustration only make it worse. Quite a trap, huh, but the nerves have the final say, don't they?

Another handling is to keep my mind off it. I watch about 4 movies a week on DVD’s that I get from the library. Along with keeping busy at work (even during the time I looked like death warmed over and lost 20 lbs) has been better than taking any drugs. The neurologist prescribed the lidocaine patch, but, alas I was allergic so that was not the answer for me. But, worth a try for anyone who could use it.

I do give myself permission to spend 12 hours a day in bed if that's what it takes to get 8 to 10 hours sleep. These nerves like to be rested. In my case I slept half sitting up for 3 months because for some reason the nerves did not like lying down. Neither do they like heat or cold. My worse moments were after a hot bath. One thing you could try is a hot/cold gel pack, but do not heat it or freeze it...just put it in the fridge to cool it... then experiment. You could try cooling it in a sink of cold tap water which may be cool enough.

I spread coconut oil on the area and that is soothing.

I take Lysine on the advice of a Dr. along with Vitamin A. The doctor kept trying to boost my immune system which probably helped me get healthier but does not solve the shingles.

Have you noticed the effect of toxins? Does it get worse in an area of toxic air (like some stores). My rib-cage nerves light up like fire works if I breathe toxic air. This is also true of taking toxins internally…organic food is best as is purified water.

One thing I have to do is keep at an even temperature and an even emotional mood. If the damaged nerves feel disturbed in any way they rebel.

It could be these items are different from person to person or for shingles outbreaks in different areas of the body. But that would be interesting to know too.

Have you heard of Valtrex the antiviral medication? They say it won’t work if you take it 3 days after the beginning of an outbreak. But, if you are having multiple outbreaks and you can tell when one is coming on perhaps you could try a round of this antiviral medication.

I certainly wish you well.

Hi HenryJay,

I didn't get the shingles on my face, I got it across the left side of my breast.....the outbreak was't that large but the pain is in the middle of my back!!!!! I don't understand this disease at all, but what they tried to explain to me was that sometimes it's not where the outbreak occurs that that is where the pain (PHN) will go. It seems this disease runs along the nerve carriers....which meant for me, when the outbreak happened in the front, the nerves in the back were affected. What I didn't understand was that I had serious, and I mean SERIOUS back pain BEFORE the outbreak. They say this happens too. This is the strangest and what I find, the most frustrating disease (aside maybe from Lyme) that I've had. I did get 3 lyme tick bites that were caught pretty much within the first few days of getting bit, but I wonder how much, if any, role that could play in this. It seems I've read a lot of people also had gotten bit by lyme ticks and then later got shingles. I know Lyme also works on the neurological aspects too so if there's a connection who knows.

Yale University is doing a study now (started a few months ago) on a new treatment for PHN but since I no longer live there, taking a 6 hour drive once a week from Maine would have been too much too participate. Maybe you can find out which drug they are testing and find someone in your area that also may be testing it.

I do have to agree with KMorris on the stress thing. ANY, and I do mean ANY kind of stress seems to just make the PHN go beserk. I just sold my house because I can't find work due to the fact on so limited on the hours of driving and sitting at a desk all day, but now, I'm staying with a friend (who's wonderful but it driving me crazy with all this "New World Order" stuff, while I'm trying to get my site ready for yes, a double-wide. But at least it will be mine, but the stress of trying to get the well guy, the septic guy, finding an electric pole that won't cost me a fortune, and then getting them here to actually do the work because bird and bow season just started, is creating sooooooooo much stress. I'm in a panic because what few nice things I do have are in one of these stupid plastic garages sitting outside and soon enough it's going to be turkey season, then deer season, then ice-fishing season!!! LOL's. I LOVE living up here and would never go back to city life, but until this is over, my doctor's are almost giving up until this crap is over with. I'm on Neurontin 3 x's a day, along with Zoloft because the the Gabapentin triggered panic attacks, and on Oxycodone 4 times a day. The Oxy seems to be the only thing that at least takes the edge off enough for me to sit and try to write a few spec species to send out to publishers. The problems with the Oxy are, they make writing and researching take three times as long for me as it used to so by the time I've done researching an article, I'm too tired or too much in pain to write the article so I have to wait for another day.

Like everyone says, this disease is something we have no control over, we can just "manage" it the best we can.....and we all each have to find the way the works for us. Good Luck!

Shantiann

I have had shingles on the face that started when i was seven years old (now 61). I would get them on one or both cheeks (looked like Ragged Andy). The patch would be the size of a silver dollar and get nasty looking and hurt like heck. Doctors always said not to touch it. I would get it once or twice a year well into my forties. Over time i could tell when it was coming on. For several episodes towards the end of my problems, i gave on up leaving it alone, like the doctors had told me to do. As soon as i noticed it coming, i would wash the area with a buff puff and antibacterial soap. I would the apply antibiotic salve to the area. The bouts became less severe, it has now been 8 years since my last outbreak. I can"t tell you that this would work for you or not; but i do know that leaving it alone only gave me years of pain.

Hi Henryjay and everyone else. My heart goes out to you! I broke out with shingles in my 5 th cranial nerve and throat 2 years ago at the age of 27. The blisters were on my right temple, scalp, cheek, inside and all over my ear (couldn't hear out of that ear for weeks because the blisters and swelling sealed my ear shut), down the outside of my neck, and inside my throat on the right side. It was excrutiating and the ear pain and headaches were horrendous! Luckily the blisters only lasted a month- but the neuralgia lingered on. It felt like I had little ants under my skin crawling around and biting me. When I got into the neurologist she was amazed I hadn't gotten Bells palsey as this is common for shingles in this particular nerve group so I know I am a very lucky girl. I took percocet for pain which didn't get rid of it, but at least took the edge off the headache, and then also took Lyrica which I think helped resolve the neuralgia since it went away two months later. I would also sleep with a bag of frozen peas on my face which helped me get some rest. I just kept about 5 bags in freezer and switched em out every couple hours or when the pain woke me back up. I have had a multitude of other health problems over the years and I am currently being tested for Lupus and a slew of other autoimmune and connective tissue diseases as well. Unfortunately my neuralgia has also recently returned but luckily no blisters. I am going to go back on Lyrica in the hopes it helps again and am using the frozen pea trick again too. I already take percocet for my other chronic pain issues, which doesn't help much with the nerve pain, but at least helps with the blinding headaches. I also take a magnesium supplement which one of my dr's said is good for nerve and muscle function (I have chronic "all over" muscle spasms and cramping). Anyhow, maybe these things could help you some? Nerve pain is a terrible thing to experience anywhere in the body but especially in your face. I truly hope you find some relief. Hugs all around! :) Kristin