2 years after shingles and still itching eye and forehead

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It is now over 2 years since I had shingles in my right eye, on my forehead and head, I still have the itching problem every day, and nothing seems to stop this, I have bought expensive creams/gels hoping that something would work but it doesn't, I always end up using  sudocrem and although too thick for putting on eyelid, it is the only thing that doesn't sting and make it more sore, My vision is ok but not as good in that eye and I now have mild cataracts , worse in the right eye,

Does anyone know of anything that would help the itching please or does anyone else suffer with this for so long?!! it gets very depressing, I have just started taking Amitriptyline hoping that it might help!

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  • Posted

    Hi Jane,

    I've had PHN in the same area as you, for 27 years now.  I have itching, numbness, and pain, but the worst symptom has always been the itching.  First, I can tell you that the symptoms decrease with the years.  Slowly, but they do.  While my symptoms were once quite severe, they are now more of an annoyance.  So you have that to look forward to. 

    I've found a few things that help with the itching:

    Aspercreme has been my friend for most of that time.  It doesn't stop the itching totally, but it decreases it pretty well, and works quickly for me. 

    A couple years ago I discovered that during an itching flare-up, when it gets really impossible to ignore, if I drink a large glass of water the itching will stop in about 30 minutes.  I'm theorizing that mild dehydration has something to do with these exacerbations of itching. 

    This year I discovered a cream that works better than Aspercreme.  It's triamcinolone acetonide.  It was prescribed for eczema that I have on my leg, but tiny amounts work really well for my itching.  I use just a little in the areas that are the worst:  Scalp line, eyebrow, eyelid and bridge of nose just to the side of the eye.  For me, this stuff works slower than Aspercreme, but more completely and for a much longer time.  Lasts about 12 hours or more.  Oddly, it not only helps with itching but also restores natural feeling to the eye and forehead, getting rid of the numb feeling I've had all along.  Please get your doc to prescribe some of this, and try it.  Let me know if it helps or not, please. 

    Amitriptylene:  Being a retired psychologist, I'm very familiar with this med.  I've seen a few people in my 40-year career that it helped with pain, but most people don't like it because it causes drowsiness that lasts into the next day.  But, might be helpful.  Some people use it for sleep, but as I say, it has a very long half-life [stays in the blood stream a long time]. 

    Hang in there!  You will get better at managing this!

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    • Posted

      All of us have to make our own decisions, with medical input, on how we will manage this condition. I decided in year one that oral meds were not the way I wanted to go, because of side effects (mostly sedation). When I hear from others on this site about how difficult it is to get off oral meds, and how much the meds affect their daily functioning, I’m glad I went that route. I never did allow PHN to stop me from working or doing things I like, though at times that was very hard. In hindsight, I think that was a good path for me. 
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    • Posted

      Thank you very much Charlie for your long and helpful reply, I am taking amitriptyline and at least it really helps me to sleep a whole night, but you are right in saying it does tend to last the next morning! I get no pain it's just the itching that drives me crazy and then if I rub my eye it then gets sore !

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  • Posted

    I have PHN in the same places as you.  Its been 1 1/2 yrs.  Mine is in the left eye, forehead, head along with the pain and itching.  I take 600-900mg gabapentin  (after weaning down from 2700mg)  Itching stops with gabapentin and aspercreme (etc 4%) several times/day.  I tried going lower on the gabapentin but pain was too much.  I don't use aspercreme around my eye but do use Alloway which is ok if it gets in your eye.  I also use Refresh Gel Drops and am still on Prednisolone forte.  The eye drops are prescribed for dry eye but maybe that will help you.  I had a cataract and glaucoma removed from my left eye also.  Try cold water on your head in the a.m. and see how long that lasts.  I find winter and cold water to help.  I can't wear hats and even wind hurts.  I'm resigned to having this forever and consider myself lucky that it doesn't stop me from living.  Good luck; let me know how you progress since I think we are pretty similar in scope.

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    • Posted

      Thank you Marcia,

      I do use  Hylo eye drops 5 times a day and use a gel in my eye at night, I also have other drops to use at any time. It's hard to get a cream for the eyelid that doesn't sting but i have one in mind to try again, I'm not sure if I am allowed to mention brand  name  on here?  Antihistamine cream never works as  it's for allergies which is not what I have .

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  • Posted

    Hi Jane

    ​I have not been on the site for some while. I suffered shingles in my right eye just over 5 years ago and I am still recovering from PHN. I followed Charlies route and declined the gabapentin feeling the side effects could make me worse in the long run. It took a long time for the infection in my eye to not return and have had a cataract operation. I still have the numbness and sometimes pain centring on my eyebrow but it is very slowly going. Thanks all for the tips on creams I could use. From the outset I was determined to fight the pain. I decided to go to Keep Fit and Tai-Chi and keep doing manual things to make my body stronger and I lead a pretty normal life although it does effect my concentration. I am still seeing a cranial osteopath who works on the nerves etc in my head and also my body shape and I have found her a great help using this very gentle form of osteopathy. I hope this information is of use to you and anybody else who is suffering from this awful illness.

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  • Posted

    Hi Charlie

    Charlie.Thank you for your recommendation. I have researched this product and don't think it is for me. I do not suffer any itchiness and my skin looks normal. The feeling I get spreading out from the eyebrow varies. Sometimes it is a numbness, sometimes feels that my skin is being stretched or sunburn feeling and then I can get stabs of pain and now very occasionally a longer intense pain. The numbness that I had on the right side of my nose has now gone. It has been a hard slog but if I compare one year to the next there has been improvement as the PHN has receded. I am 76 years old and determined not to let it spoil my life as much as possible.

    ?Jane. I hope you find relief soon. Try to keep fit, eat and drink healthily. This may make you feel better and go some way to overcoming the awful feelings.

    ?Cheers to all. David 

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  • Posted

     July 2018 will be 5 years since I got ophthalmic shingles on my left side (top of head to face to eyebrow. I was left with PHN, at first with numbness, then pain and itching. The disease also scarred my left eye cornea. In my case time has helped and today I have a mild case of little or no pain and some  itching, mostly when I wake up in the morning. For itching I get a cool wet  towel and gently rub the itching part. I also take an amitriptyline 25mg pill at night. The left eye is better where  today I have 25/20 vision with prescription glasses. Periodically, I have acupuncture treatments. The best thing: I do my best to NOT touch my scalp to prevent activating the PHN. Hopefully, the PHN will fade away someday. I have read that one can have PHN for months, for years or for life. Perhaps in your case you will notice some positive change in due time. Best of success!
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  • Posted

    See my reply below.
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  • Posted

    I was sitting here scratching my forehead and it occurred to me to google it and here you guys are! It's been about 6 years since my initial outbreak and my itching, numbness, etc. is still bad. I can forget about it, but sometimes it all just lights up.

    I had the 'old' shingles shot years before I had shingles, but now I'd like to get the new shot. It worries me that the shot will trigger worse PHN symptoms. Do any of you have any experience with that? My Dr. said it's ok to have it one year after you get the shingles, but I wonder if that advice is based on the average case where the shingles actually end. Any thoughts on this? Thank you very much.

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  • Posted

    Josie, I too had an outbreak of ophthalmic shingles, the worst time, in July 2013, and got stuck with PHN. The shingles affected slightly my left eye cornea and left me with a droop left eyelid. I also had small cataracts in both eyes. But thanks to GOD and my very good Ophthalmologists, my doctors took very good care of my eyes. My droopy eyelid was surgically corrected and cataracts removed. Although I am stuck with PHN, for how long, only GOD knows. Today I have a very mild case of PHN. MY vision is very good, little or no pain, but I do get some itching either before I hit the sack at night or when I get up in the morning. Recommend you get a wet towel and slightly rub your itching part and do not think about it during the day. I also take a 25mg amitriyptlinel pill at night. Suggest you consider chiropractic and acupunture treatments. The have helped my immune system. Consider taking the new Shingex vaccine. This new vaccine has 90+% of preventing shingles or preventing the return of shingles. Hope the above helps and wish you the best.

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  • Posted

    Hi I am 56 male and lost.. Personally I believe my situation is HSV1 but , sigh, all the blood tests.in Canada are constantly negative.. And Dr.s will not accept PHN from HSV 1 or 2....

    So yes I had chicken. pox as a child.

    I also had an incredibly sore neck that I could not turn for 6 weeks in Aug 2017.

    Then in late Sept 2017 I was sitting with friends in a roadhouse when I drunk women fell over backwards onto me ..As she got up she turned and slobberred a kiss all over my face.. Big laughs.....gross !!

    2 days later...pressure under lip tingling and itching...Also severe headaches severe fatigue and nausea..

    i was scared...Had mulititude of tests done quarterly for a year..and hsv done again at 18 months...All negative.

    But ....the headaches fatigue and nausea that lasted 6 weeks. are nothing compared to the daily burning itching tingling and sense of leaking fluid with numbness in cheeks.

    Coffee seems to make it all worse.

    My family Dr is also the community Sexual health Dr and says it may be viral but we arent checking every virus...

    So she sends me to nuerologist who does motor tests says I am.fine and to enjoy the summer...I saw him at 10 month mark.

    I was referred to 6 Dermatologists all of whom declined the referral . My family Dr..told me that the Derms would most likely deny the referral since there was little to nothing to physically see.

    And they all declined.

    I was sent to MS clinic ...That took 18 months and then they needed an MRI which took 6 more months for appt...and then 6 more months to see Dr to discuss results.

    That will be in January 2020...This all started on Oct 2 2017.

    Every single day...itching crawling burning stinging...numbing...like a frostbite...day after day...Sense of leaking and wetness that when I wipe lip it goes away.

    went to my family Dr. early on about 12 times in 3 months as I knew this was serious...Had tests repeated...I have learned that up to 30% of HSV1 can be false negative and because your DNA/ virus show negative if it is truly positive it will never change the result in future..Antibodies just wont show on that test for that 30% of population..

    Then the belief if PHN CAN be derived from HSV1..? another education ?

    anyway....No anti virals my DR doesnt believe in medicating without proof.

    Yet she did prescribe a anit depression drug ..Took it for the month as prescribed...no change.

    this was entirely on my face...Lips, cheeks, Trigenmial nerves.. but now I am feeling the tingling in back along spine , further up face around eyes and also shoulders back and arms.

    I am or was very active in hockey and the gym...learning to play guitar and very active with work in an oil refinery.

    Due to this I have almost contemplated suicide...Ive been through a lot in my life...chronic asthma chronic fatigue/fibromyalgia possible lupus but still never ever miss work or sports.. I have pushed through..

    This has stopped me from touching loving and sharing...it has stopped me ...and as such it has hurt others with my new lack of touch.

    i am.afraid I can pass it on !

    so 24 months contant itch burn crawl mostly all over face....

    No resources no answers....essentially lost and no path...tired of pushing .

    cant imagine 30 more years of pain and loneliness.

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