Shingles Support Group

Herpes zoster, colloquially known as shingles, is the reactivation of varicella zoster virus, leading to a crop of painful blisters over the area of a dermatome. It occurs very rarely in children and adults, but its incidence is high in the elderly (over 60), as well as in any age group of immunocompromised patients.

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My Facial Shingles Story

I am writing just to share my story of facial shingles, and to give hope to everyone currently suffering from shingles and facial shingles in particular. While every case of shingles can be different, I hope my story will occasionally serve as a guide for other sufferers who regularly read these posts or who may come searching along in the future. Sorry in advance if it is a little long!

Age is critically important in the prognosis of shingles. I am a 510 155 lbs. 32 year old male. My story and guidance may not be appropriate for shingles sufferers who are older. Generally speaking, if you are younger and have contracted shingles, the prospects for a full recovery are excellent. Please remember that.

Pre-shingles - Stress
I recently found out my wife was pregnant with twins. I am ashamed to admit that I didnt really want twins, and while it sounds incredibly silly, in my heart I fought with the idea of twins being in my life. I started drinking a little more (about 2 beers a night) and I stayed awake late into the night playing video games, regularly going to bed around 11:30 and waking up at 6:00 for work. My sleep was poor and I believe the alcohol suppressed my immune system. I also never really came to terms with the twins being a part of my life instead I tried to escape from it. I believe these factors were the root cause of the activation of the shingles virus in my body.

5 Days Prior to Diagnosis - Headache Starts
I left work an hour early one day with a slight headache. I didnt think much of it: went home had a beer and an Aleve, and grilled some bratwursts. But the next day my headache didnt go away. In fact, it got progressively worse. I had a constant, 24 hour dull headache for the next two days, and I took some more time off work. I saw an immediate care physician and was diagnosed with sinusitis (which I believe was a very reasonable diagnosis).

2 Days Prior to Diagnosis Severe Headache
I woke up at 2 am on a Saturday night with a screaming, pounding headache on the right side of my head above my temple in the hairline. I had terrible flashers in my right eye and constant pressure behind it. I was actually in tears from the pain. The ER doctor diagnosed me with CLUSTER HEADACHES. Again, a reasonablealbeit horrifying diagnosis given the symptoms. Cluster headaches are commonly referred to as suicide headaches for obvious reasons, so I was pretty bummed for the next two days.

I felt okay on the narcotics I was given, but then I began to notice red pimples / boils popping up all over my face. On my eyelid, in my eyebrow, on the tip of my nose, all up and down my nose, on my temple, in my hairline, on my forehead, etc. I took a shower and wiped the pimples harshly with a towel, which caused them rupture. I went back to the ER and was immediately diagnosed with shingles. I can honestly say I was HAPPY TO HEAR THE DIAGNOSIS given the horror of the prior diagnosis. I think I actually let out a cheer in the ER. Crazy.

8 Days After Diagnosis Narcotics and Sleep
I was given the usual dose of antivirals, steroids, neurontin, and narcotic pain killers. I spent the next 8 days or so in bed: on heavy narcotics, having these strange, fantastical visions and hallucinations when I closed my eyes to dream. I slept most of the time during these 8 days and the boils gradually scarred over and my eye swelled completely shut. A quarter of my face literally melted off during this period and new, tough, leathery skin appeared in replacement.

I was also constipated during these 8 days. My constipation cleared up when I stopped taking narcotics and began eating prunes and fiber one bars. The acute pain from shingles receded toward the end of the 8 days and I was able to get out of bed and function marginally again!

Week 2 Steroid Induced Rebound
The steroids I was taking (one of those dose packs) were making me feel incredible. My eye was starting to open up and I had an unusual amount of energy and strength. I even tackled a few home improvement projects in this week. I generally consider this a mistake. The steroids were an artificial high, and my body really wasnt ready for any strenuous activity. I would advise others to get only gentle exercise or rest during any rebound period.

As I came off the steroids at the end of the second week, I began to feel more pain, lethargy, and my eye swelled shut again. While the swelling was and would continue to be an issue, my ophthalmologist advised me that I dodged a bullet and was lucky not to have lost my eye. Thats right shingles, Im a bullet dodger!

Week 3 & Week 4 Insane Itching Begins
My old skin had fallen off and was replaced with new red, leathery skin. About weeks 3 & 4 this new skin began to really itch. Like intolerable itching! The itching was so intense I would wake up 7 or 8 times a night with my hands ravenously scratching my face. Its strange: the new leathery skin I had didnt really have any feeling in it (except for the itch of course). So itching it actually never resolved the itch. I even itched my nose so badly that it began to bleed and I was unaware of the bleeding until looking in a mirror! After 3 or 4 days of not really sleeping because of the itch, I finally took a hydrocodone I had left over from the first week of my shingles andwowlet me tell you it was a godsend. I slept the entire night. A good nights sleep can do wonders. I had to use hydrocodone to sleep about four nights in total during this period. All in all, the itching phase of my shingles lasted about 14 days before it gradually stopped all together.

I generally felt lousy during these two weeks, and I struggled to do even the slightest physical labor. My eye was still swollen shut through week 4 (though I could open it without the use of my fingers). I forced myself to go on long walks for exercise. My motto during this period was borrowed from the Marines: Adapt and Overcome. All in all, these were the hardest two weeks of my shingles.

Weeks 5 - 7 2nd Steroid Pack
My primary care doctor didnt like the way my recovery from shingles was progressing and prescribed a 2nd dose of steroids. This second batch was a much larger dose with a much longer taper, lasting about 20 days in total. My body responded positively to it and my eye opened up about half-way toward the end of the dose, only to swell shut again after stopping the medicine; and then, by itself, it gradually reopened halfway toward the end of week 7. My doctor said my facial shingles were the 2nd worst she has seen. The poor soul who was worse had his eyelid invert for months! Wow!

My rash finally began to fade somewhat in week 7. It is still present, but is gradually being replaced by clumps of little pimples numbering in the hundreds! I saw a dermatologist and was prescribed acne medicine for this condition. Shingles is crazy!

Week 8 Eyelid still swollen
I saw a second ophthalmologist in week 8 to reexamine my eye. He remarked that if I had not told him I had Shingles, he would not have been able to tell by examining my eye. The swelling has been slowly getting better and I am confident the eye will return to its normal state within the next couple of months. Sensitivity to light is still an issue, but I am optimistic about recovery in that area as well.

I still have mild pain in my hairline probably owing to PHN. (My sincere condolences to those suffering from more severe PHN pain Im really not sure how I would handle that.) I plan on tapering off the Neurontin over the next two weeks. My shingles rash is still present even in week 8 (!), but is gradually dissipating. My new leathery skin still has no feeling but I am told that will also gradually correct.

Positives Takeaways from my Shingles Experience

1. Shingles forced me to take a hard look at stress in my life and my reaction to that stress. In particular it is clear that I handled the news of twins poorly. Yes, the first 6 months will be difficult, but by 3 years of age they will be a real blessing. And the truth is, they are as much a part of the universe as you and I, and have a RIGHT to be here. My duty is to raise and guide them as they grow. A wise man once said: You dont get to choose the challenges you face in life, your only choice is how you respond. Shingles taught me this lesson. I had to learn the hard way, but I did learn it.

2. I have been sober for 8 weeks. I will admit that it is fun to drink a beer and watch a football game, but I have no plans on going back. Keeping my immune system strong is too important to me now.

3. I no longer watch TV or play video games after 8 oclock at night. I read books with my five year old, or King Lear and National Geographic by myself. My sleep has improved a lot! I think the glowing light of TVs and computers right before bed can interfere with falling asleep.

4. My diet has improved. I stopped eating potato chips and have replaced them as a snack with fresh fruit. I think this diet change has also allowed me to become a better runner to boot. The doctor told me not to run while still suffering from the effects of shingles, but by week 7, I had to start again regardless. How long is one supposed to wait? At a certain point you just have to get back on with your life.

My Advice to Others Suffering from Shingles
Listen, shingles is a mean, nasty virus that will beat you to your knees and keep you there permanently if you let it. You are in a battle with shingles! You are in a battle. There will blood, but you WILL emerge the victor! You have to believe!

Learn to cooperate with the inevitable. If you have a stressful event in your life that you have no power to change, for Gods sake dont fight it like I did, cooperate with it. I tried to fight the reality that I was going to be a father of twins. I told myself the twins werent really going to happen. How silly is that? Learn to handle your stress before it handles you.

Finally, listen to the wise words of a terminal cancer patient: Dont give up. Dont ever give up. You can beat shingles!



I really enjoyed your story. You seem to have a great attitude. I have an autoimmune disorder, rheumatoid arthritis, so even though I am only 39, my shingles have lasted so far over 8 months. They are much better now than they were and I think I may see the light at the end of the tunnel. And you are right about gaining perspective. Having shingles makes you think about all the small things you take for granted on a regular basis, like not constantly worrying that you will scratch your skin off in your sleep! Thank you for your story.

thanks so much for sharing this and being so honest. you are so right about figting this virus. you rbody doesnt have energy to live "normal" when it is fighting such a nasty condition. all your energy goes to dealing with pain, itching, exhuastion, dealing with medication side effects etc. when doctors told me to let it run its course and it was a virus i didn't expect to be down almost three weeks. i have read some interesting articles on tagament and shingles. tagament is the over the counter drug for your is suppose to shorten duration and severity if taken on the onset. wish my dr or i knew about it because six years later i have phn pain. it is better than before and nerves heal a ml at a time so patience is the key. i had shingles on my ear drum huge left over issues with this and bells palsy at same time. so eye issue too. but i am currently under botox injections for phn pain and it is helping. i take vitamin b to help support my immune system. and changed my life style also, good advice. don't ever give up looking for relief and treating your self well during something like this...blessings to you for complete recovery!

I am so glad you shared your experience with us. It helped me and it was Mom who had the shingles. I will relay your story to her. After reading yours and others experiences and seeing Mom's, I am so lucky not to have had them--I got the shot last February.
It seems that stress is the biggest common cause for this horrible affliction. It does take courage to withstand the illness and then all the pain after.
For everyones sake, I wish shingles would disappear but that is not reality. Other than try to control stress, there doesn't seem to be much anyone can do. It is a nightmare to go thru!
Take care

Thanks for the support everyone!

Just adding an update as a reference for anyone else that may come searching along in the future or feels there facial shingles has progressed similar to my own.

Weeks 9 & 10 - Finally started coming off medication
I tapered off both my neurotin and prednisolone (steroid eye drops) over the course of about a week. I probably should have tapered for two weeks but I woke up one morning just really unwilling to continue taking neurotin and decided I would stop taking it straight up.

I definitely experienced withdrawal from both the neurotin and steroid eye drops. For the first four days or so after discontinuing these medications I felt a little more agitated and sore than usual. I also felt like I had cravings for the neurotin at night before bed. These feelings eventually went away after about 4 days of no use. Neurotin almost certainly helped with my (mild) pain. I'm just not convinced long term use of this type of central nervous system medicine is justified for only mild pain.

My eye is a little more red now that I have stopped taking the steroid eye drops. Again, long term of use of steroids in my eye frightens me. So I'm done with that too!

I still have lots of little pimples (possibly cysts) where my rash was. They are gradually fading over time with the Rx acne medicine I am taking. My eyelid is also still (!) barely swollen and somewhat sensitive to bright light. Parts of my skin still have no feeling on touch at first, but will "wake up" after rubbing the skin for a few seconds. I am fortunate to say that I can notice almost daily--albeit slow--improvement with all of these conditions.

Best of luck to everyone dealing with this! You will come out of this a tougher person!

Thanks for your story, the paragraph about battling shingles made me cry, I knew it was not a nice thing to have but I never realised it was quite this evil, my shingles also started with headaches about 3 weeks prior to the blisters arriving, I am now 5 weeks into it and I have a painful eye infection to add to the misery, your story was very inspiring, thanks for sharing it
Take care

It has now been about seven months since I was diagnosed - and I have beaten shingles!

I am just adding a final update in hopes that it may serve as a guide for others battling with this terrible virus.

The severe acne post shingles faded after about 2 months of Retin-a treatment.

My facial nerve has probably completely regenerated. It feels almost exactly like the other half of my face, but occasionally it will still tingle or tickle a little bit.

My eye has taken a total of about 7 months to recover. I probably had to use steroid eye drops (Pred Forte 1% and Pred Mild 0.12%) daily for about 5 months in total. Tapering off these medications proved particularly difficult. Vision is still slightly affected. My eye also only opens to about 95% of what it once did.

My twin girls are beautiful. Today, this moment, is the moment I had worried about when I first contracted shingles. Worrying was definitely not worth it! Please learn from my mistake and think about how this may apply in your own life. Or take a tip from Jesus: "Do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life? ... Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

I keep a bottle of Valacyclovir in my nightstand in case Shingles decides it wants to go another round, and lose another bout.

Blessing and best wishes too all for a speedy recovery!

I would just like to say, thank you for posting your feelings and story. There are so many stories on this forum area that you could read all day each one, but yours caught my eye and I actually finished the story.
In my case I too have suffered from medication withdrawal and it increases at night. When my body and mind are tired and yet wont settle down and rest. Stress as I have said all along is the first and foremost factor for me having the shingles. I suffer the daily PHN and there are days I cant believe it has gone on this long. As, I have said before once you get a bad case shingle virus it takes a hold of you and doesn't want to let go.
You have shown that you can overcome some of your lifestyle behaviors and be okay. Anyone can change areas in their life and you are a good example of that, so thank you for sharing your story.

thank you Moru for your posts. Even though I'm going thru shingles myself, I learned so much about coping, diet, lifestyle and more. I'm so happy for your recovery and of course your twins. All good things!
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