Shingles over and over again need advice re: causes please

My story began in January 2014, when I was under tremendous stress and duress and experienced my first bout with shingles. My backstory is this:  I had chickenpox as an adult at the age of 21, and the virus only attacked my scalp...my entire head was essentially one giant chicken pock! So when the shingles began, the back of my head felt like someone had beaten it with a baseball bat. Excruciating pain that radiated up my head and down the base of my neck. I was physically drained and felt very unwell. A day later, the welts began to form, and later to erupt, ooze, and crust over. It first began on a Friday, so I went to urgent care on a Saturday to say I thought it might be shingles. The staff treated me like I was crazy because it wasn’t located on my trunk, but prescribed valacyclovir anyway, because the welts did look like shingles.

Since that time, I have had 10 more episodes, and yesterday I woke up with the dreaded pain in the back of my head and a big welt near my temple. This makes my 11th episode. Thankfully, my new ObGyn has been a wonderful ally and has believed and validated my dreadful experience. She has prescribed a standing order for me to fill for Valacyclovir anytime it reoccurs. However, I want to find a way to minimize the reoccurrence rate because it is truly debilitating when it strikes. I found this forum yesterday because I am desperate to find answers.

My question about the shingles diet is: should one avoid the arginine-rich foods indefinitely, or only during flareups? I have no other health issues beyond the recurring shingles. I am a 43 year old female, and my last episode prior to the current one was 11 months ago. Prior to that, it occurred  every few months. Thank you all in advance for your help and patience!!

Dear Lucy,

I see your post is dated 11 months ago. I hope this reaches you but even more hope you are doing better. I am in the USA, female, turned 50 this past year and like you, have battled recurrent shingles. I am truly sorry. I can not give you all the answers you seek but can offer what i've found to be true and helpful in my own battle with shingles.

At age 39, I was diagnosed with breast cancer. It was a shocking diagnosis, as breast cancer does not run in my family and also the type cancer I had was quite rare and typically was found in Asian women and there is no Asian descent in my family, that could be found on any side. Thankfully, I did survive following a full mastectomy on my left side. After 2 years, it was all behind me and have been cancer free since.

Approximately 3 years after my initial diagnosis of breast cancer, I began to get shingles on my lower back hip area. Like many, I suppose, I did not know what it was but the pain that came with it was unbearable and had me at the first med-stop I could find because it was after doctors hours. It was a quick diagnosis, antiviral, an injection, topical ointment and a long 2 weeks. The breakout was not very large I size, being smaller than a golf ball at most, in diameter. Researching many sites online, I recall feeling thankful that my breakout was much smaller than many have suffered but the pain was unbelievably unbearable, despite its small size. Needless to say, I was so happy when it finally healed.

Unfortunately, this feeling of happy relief was shortlived because approximately 3 months later, I had shingles again. It returned to the exact location as before, no larger, no smaller and every bit as painful as the first time. Afterwards, despite being put on a daily dose of 3000 mg antiviral every day, the shingles were still coming and more frequently. Always on my right side, same place, same size, same ordeal. Till one day, I began getting shingles in my right eye, which greatly affects the eye but the rash manifested itself first each time on my nose. For shingles in your eye, the option of home treatment is not typically possible as it requires hospitalization. To speed my story along more quickly, since my first bout of shingles, I have had shingles, more than 147 times. At times, on my right hip, other times in my right eye, sometimes both at the same time. I will add a note of caution to anyone reading this who has been diagnosed with shingles already. I suffered nerve damage in my face and head that could have been avoided had I had a speedier diagnosis. No one's fault because no one could have guessed. Like i mentioned before,I was put on 3000 mg antiviral a day, every day. So when the shingles did get into my eye, the antiviral was keeping it just enough under control that made it difficult to diagnose and so it was missed. During a hospital stay, after being on antiviral for years,it was suggested that perhaps my body had reached toxic level from the antiviral and perhaps this was the cause of this mysterious facial rash and the pain that bounced inside my head to face to ear to nose to cheek, then repeated the path, much like "lightening in a bottle" and all I could do was scream until I was sedated each time. Thinking it must be toxicity from too much antiviral, I was taken off, with hopes I would improve. I did not. Discontinuing the antiviral caused the shingles in my eye and face to develop fully and though I suffered greatly for 3 longest days of my life, it did give a clear and solid diagnosis. So for this, I don't regret. I shared this to caution anyone going through shingles, to be watchful for it to spring up elsewhere and early diagnosis is the key to prevent nerve damage and even permanent loss of eye sight.

Again, to speed my story along, I was finally able to have the shingles vaccine but due to CDC and FDA Regulations that i be minimum age 60, it did take a while for me to get the vaccine. Also, I was unable to meet the requirement of being shingle free for 6 months before getting the vaccine. In the end, I was unable to even go 2 weeks without shingles, making a 6 month waiting period impossible goal. Having no other humanitarian option, I was allowed to have the vaccine only 5 days following one of my worst bouts. I was advised the risks but as I wasn't living any quality of life at that time for several years, I gladly took that risk. The four days that followed are much a blur because I had to constantly be sedated over and over again because when conscience, it was unbearable. As terrible as I've described it here, its accurate but I say without ANY reservation, that it WAS worth it. That was 2 years ago.

After the vaccine, I stayed on the daily antiviral and still on them today but at much lower dose. There are times when the shingles "TRIES" to come on, with visible signs of small breakouts but I can usually back it down each time with slowing my pace, a day of taking it easy, huge reduction in stress and healthy diet.

As for advice from what I've learned from my own experience, I offer this:

*The shingles vaccine DOES work but wait the 6 months shingle free, IF possible. For me it wasn't but I still DON'T regret it.

*Even after shingles vaccine, expect to stay on oral antiviral for several months after

*Watch for signs of it appearing in other places, especially the eye because that's where fast treatment is needed. Shingles will appear on the SAME side of your body, no matter where it appears.

*Before applying topical anesthetic to the shingles site, apply a warm compress, reheating several times, to the outbreak site before applying the anesthetic. This can be painful but the topical relief lasts longer.

During an outbreak, try to wear clothing that does not rub against the rash. The more it is rubbed against, the more painful it will flare. Avoiding pain WILL help it heal faster

*Stress does not actually cause a bout to occur, the chicken pox virus causes it, BUT stress WILL trigger it

*For women, the time around your monthly cycle makes you more susceptible than other times

*I try to maintain balanced diet but have found huge success eating green beans and/or green peas and frequent tomato soup (not V-8) but actual tomato soup. These items are ALWAYS on the grocery list. Campbell's tomato soup in a can is fine

*The electric shocks that travel the legs during shingles can be eased by a vibrating back massager laying BESIDE you. DO NOT apply directly to anywhere on your body DURING a shingles bout as it can feel much like being hit with a cattle prod

*OTC meds like Tylenol and Ibuprofen rarely give any relief, so spare your kidneys and liver the stress

*Prescription pain relief is unfortunately the ONLY relief, so find a doctor you trust and NEVER self medicate. Allow your spouse or trusted family member to give you any and all narcotic pain meds

*Stimulants like coffee and chocolate don't have to be given up completely but consume them in moderation day to day but none at all DURING a shingles bout

Again, I hope this finds you doing well and hopefully something I've written here can help you. Take care. My thoughts are with you and anyone dealing with this painful debilitating ailment. God bless you all. ~R

I had a severe case of shingles 10 years ago. Doctors said it got to that point because I never sought treatment early enough. I didn't even know the word shingles. They then said I would get it recurring for the rest of my life because of the delay on the first encounter. I do get reoccurring in times of high stress but it is always mild. I'm lucky in that respect. Other times I get a feeling in the left ribs like needles being stuck into me but no rash. The information that I did not seek medical help in the first 3 days is probably the answer. I went through 2 bouts of measles and mumps as a child so maybe one was chickenpox and I do not suffer so badly because of my immune system. Pinchy ants is a good description better than needles.

Hi there just been reading carefully all comments & am starting to understand better my plight of reoccurring shingles & the common thread being not able to get a GP to understand symptoms & the possibility of reoccurring episodes. 

I have since maybe my teens have experienced attacks of shingles sometimes getting it 3 times a year in my early 20s. I am now 45 & have had 8 attacks in last 6 yrs with 5 trips to emergency department in extreme abdominal pain. No diagnosis though but having rash appear days later with extreme right side burning/tightness front & back on right side sometimes it would radiate to left side of spine. Have had tests galore etc etc. I’m otherwise healthy but know that there are certain triggers including heat, stress & diet, which now I see as a factor reading these other posts, it all now makes a whole lot of sense. I am on pain relief atm 30-60mg codeine during the day & trying nerve pain relief at night. 

There is one thing I want to mention regarding immune issues. I’m understanding more that I cannot push myself too hard & I need to take care of myself better. I am seeing a Neurologist for a recent MRI brain scan as there are issues there. I am also now being referred to a Immunologist & Infectious Disease specialist as NOW my GP is realising I do have an issue with Shingles. Finally!!!! One thing I do know is that I was diagnosed with Cyclic Neutropenia about 6-7 ? yrs ago which on a regular interval my white blood cell count drops? Not sure why this happens but was told if it became a problem mouth ulcers etc I would need to go back to see specialist as it could be dangerous & leave my immune system compromised & more open to infection.

Could this be a contributing factor?  

Anyhow thank you for all your stories it has helped me understand my shingles reoccurring problems & hope to be able to contribute to the discussion. 

I realize your initial post was a year ago, but as a 42 year old Women that has had 14 outbreaks of Shingles, since October! I am interested as to what was your outcome?

Any advice would be so appreciated.

Many thanks

Gabbie

I was on nasty pain medications ... the opioids. I found a great neurologist and he has prescribed high dose Gabapentin. I take 800mg. three times a day. It really helps me with the pain. Much more effective than the pain medications. It is an old seizure medication which most people tolerate really well. It makes sense that a medication to control overactive nerves in a seizure would also calm overactive nerves for pain. I’m wishing you well. ❤️ Nancy