Husband has shingles on face and eye - need advice

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My husband was misdiagnosied with a migraine for a week before he was finally admitted to the hospital for evaluation.  They treated him for a migraine on the right side of his face UNTIL the rash appeared.  Immediately changed treatment to shingles.  Shingles affted the nerve on the right top of head down the tip of his nose (including eye).  Started all the meds - acyclovir, sterioids, etc.  He is home now recovering.  Unfortunately the shingles afftected his right eye nerves (motion and lid, actual eye is ok).  Doctors say it is self limiting and will resolve in time.  Anyone else experience this?  He is in so much pain.  We started percocet around the clock wtih gabapentin.  The two biggest complaints he has are severe night sweats (needs to change clothes 3 times per night) and sharp eye pain and sensations in the head.  We are 3 weeks out from the initial start of the pain (2 weeks out post rash).  Any advice?  When will he get relief?  How long does this last?  How long for eye muscle to strengthen?  So many questions.....

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  • Posted

    Lisa take him to the eye doctor right away he could loose his vision. Asap I know just go
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    • Posted

      He's been under the care of an opthamologist since the beginning.  He is still taking steroid eye drops.  His actual eye is ok, but the muscle behind the eye and the one that controls the lid are not working.  Thank you for your comment.

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  • Posted

    His event sound similar to my own only his above the eye mine below but the eyelid and surrounding area sound very similar. I am in week 3 since diagnosis.

    The eye pain the most annoying aspect of this. I foud short term relief is a wash cloth dampened and frozen then let to thaw slightly so is just getting pliable then form to face a little press against my face / eye for about 8-10 minutes. It has some discomfort but I stick to it and get some relief. I do this a few time a day. I am considering an eye patch but already know my CPAP irritates things so not too sure a patch if going to do much good. He has hopefully seen his Opthamologist for eye concerns.

    Keep posting and I will post any updates I get, best of luck to him and possibly its just one of those things we have to get through on our own with regard tp pain. Meds are doing very little for immediate relief thus far. I tried alcohol, it has no effect even in large doses. Sticking to water and stubborness to get through.

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    • Posted

      My husband's pain is awful.  We changed meds to gabapentin and a higher dose of percocet.  Very little relief so far.  I hate these narcotics.  The meds make him sleepy and very emotional.

       

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    • Posted

      Pain is not subsiding at week 4.  His face hurts terribly and the eye has not improved yet.  Movement seems to set off the pain.  Anyone else have issues with movement?  His mornings are the worse.

       

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    • Posted

      Lisa,

      I feel the eyes and ears, as they are sense organs located close to the brain pick up any stimuli to movement, and magnify the pain. It is called allodynia. The spasms are agonizing, where you hold on for dear life. Even a slight breeze can cause the excruciating pain..when you move your eyes, you get it.

      Merry Juliana

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    • Posted

      Lisa, 

      Not sure if this is the case with your husband but thought I'd share.

      Right from when the rash appeared (and I had lesions in my eye as well), my eye became super sensitive - I felt pin pricks from every spec of dust/lint/particle in the air in addition to the Shingles related pain.  Further, I could not sleep on either side - I felt sharp cuts in my eye.  When I mentioned this to the doctor, they diagnosed it as potential corneal erosion in the night due to excessive moisture in the eye - fragments of corneal tissue that was trying to patch up each night came apart due to too much fluid.  So, they prescribed an ointment called MURO that has just enough dehydration to prevent this.  And in a day/night, I saw improvement.  

      I am on week 5 and I can sleep on either side.  

      I have a rash on the bridge of my nose where my eye glasses rest.  It was not healing at all due to my glasses.  The past 3 days, I have not worn my glasses or sun glasses and have been applying neosporin on my rash multiple times.  If I touch the healing rash, my entire eye goes into pain spasms - from eyebrows to under my lower lid.  This is the only pain remaining.

      I do have sensitivity to the sun - skin and eye.  I am on a drug to dilate my pupils twice a day.  Plus I am on the second course of Valtrex (500 mg) because in week 3, we saw new lesions in my eye - now gone.  Week 4 brought Iritis and vision issues - now gone.  

      Now on Valtrex (2 times/day - 500 mg), steroids 3 times a day, Lyrica 50 mg twice a day, antihistamine to rule of allergies and pain meds.

      I have PHN - used to feel severe burning sensation on my skin and in my eye.  Now almost gone.  I have itching that surfaces when I feel stressed and in the night - Neosporin seems to help.

      My eye wont open fully - my lid lifts only 70%.  My doctor mentioned that when the nerves regenerate and heal and the pain goes away, it may lift fully and that everything I have going on now is nerve related.

      I am a 43 year old woman, very fit, and a cancer survivor who has had numerous surgeries, natural childbrith and high tolerance for pain.  Nothing beats the pain I have experienced the past few weeks from Shingles in the eye. I really feel for your husband, and hope he gets better soon. 

      Merry Juliana, in case you see this post, I cannot imagine what you have been and are going through.  God bless and I hope you are relieved of this disease.

       

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    • Posted

      This has been mentioned by someone before, but I did not mention it in my original thread..well, because of the nature of things.

      I found HUGE, I mean HUGE relief late into the disease process with CBD topical cream, which is a derivative of marijuana. It has no THC, but has, what I feel, were amazing healing properties. I live in a state where we have open medical marijuana shops and I sure wish we would have thought of this sooner. If you have this option, please give it a try. 

       

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    • Posted

      Merry,

      Its week 7.  Not doing good yesterday and today.

      Friday last week, I started taking turmeric capsule (450 mg/day) and applied turmeric paste on my blisters (I am Indian _ so the spice is readily available i my kicthen and is part of my diet already).  I saw a remarkable difference by Sunday - I stepped out in the sunlight with my powered sunglasses for the first time since I was diagnosed.  I was also able to wear my glasses over the healing spot where I had the rash on the bridge of the nose - an area where, previously touch would cause radiating pain all around my eye.  My neuralgia was gone.  I started a 4 mile walk with my husband (it was tough - used to be super active and fit prior to Shingles)

      On Monday, I did not sleep 8 hours as I went back to work and had a deliverable; Also did a 4 mile walk - again with some difficulty.  

      Tuesday, went to the doctor, she took me off Zirgan.  Tuesday evening, felt very exhausted and felt a downward turn - had some neuralgia signs as well (on Lyrica 50mg, twice/day).  

      Today-Wednesday - felt my eyelid droop a bit, felt one lightning bolt pain, and recurring signs of v.mild burning on my rashes, face and eye - but very mild compared to prior to going on Lyrica.  Its 11 pm, feel minor pain in my eye, especially eyelid.  I had mild pain where my glasses rest on the Shingles scar on the brige of my nose.

      I am currently on:

      Prednisolone - 2 times/day

      Valtrex - 500mg - 2 times/day

      Lyrica - 50mg - 2 times/day

      MURO - 1 time/bedtime

      I am freaking out - I was starting to get better, but feel worse now.  I had to sleep twice today during the day.  Stopped the 4 mile walks.  

      Based on your experience, what do you think is going on?  What should I do different?  

      I am planning to apply zirgan today to see if it makes a difference.

      Any pointers are greatly appreciated.

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    • Posted

      Dear DesiGal,

      I would stop the Tumeric to your facial lesions, as research has shown that it can worsen ulcers. This would in turn stimulate the nerve endings to your face and cause a return of the pain. Also, any exposure to sunlight on the newly healed skin.

      I would stop your four mile walks, and try to resume quiet life style. I know that this is the difficult part, especially for those who are used to being physically fit and active. You are still in the healing stage of Herpes Zoster-Shingles, and your stressed body needs rest.

      I do not believe in taking Lysine tablets, as they can harm your body organs. Please google foods high in Lysine low Arginine, as the foods high in Arginine seem to trigger worse pain.

      I would try to avoid the sun by wearing a hat, long sleeves when outside. Where do you live, BTW? I sure hope it is not in India or the States, where it is scorching currently.....Also wear long pants or skirt.

      Remember, recovering from Herpes Zoster-Shingles is a process, and you had a couple of bad days. You learned not to stress your body or apply Tumeric to your facial lesions, which are still healing and nerve endings still on fire, and not to exercise the way you used to. This is a minor setback called a learning curve.

      You are getting better. The trend is up, but not as fast as you would like. Please be patient with your body. Tincture of Time is Mother Nature's best healer.

      I hope I have helped you.

      All my best in your health and healing

      Merry Juliana

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    • Posted

      Merry Juliana,

      Wanted to check back in with you.  We are at week 6 now.  My husband's pain was a bit better today for the first time.  We are weaning off of percocet. I am giving him 1/2 10mg pill, 2x/day for the next 3 days.  Then dropping to 1/2 pill at night for 3 days, then stopping.  Should I add Tylenol more frequently?  The doctor didn't really explain how to wean off percocet and how to transition to Tylenol.  Any advice would be greatly appreciate.  

      He's currently on gabapentin 300 mg, 3x/day, and Symbalta 60 mg/day. Seems to be helping.  Also doing accupuncture with chinese herbs.

      Fourth Cranial Eye palsy has not resolved yet (he sees double vision) but the actual eye is ok.  Doctor thinks this will resolve in about 3 months.  My husband is disappointed with this information because we are at week 6 and he wants this to end already.  Anxiously waiting for some improvement.

      What should we expect going forward?  My husband has been home resting now for 6 weeks.  He can't get himself to work.  I walk with him 2x/day to get him moving.  We live in FL so it is really hot here and that is not comfortable.  How do you get the energy and courage to return to life again?  

      Thanks again for being here for all of us in this forum.  You have been a tremendous help to us.

      Lisa

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    • Posted

      Lisa,

      May I ask what your husband's profession is?

      Fortunately, he has been placed on an antidepressant Cymbalta, which usually takes about three weeks to start working as an antidepressant. It is also rather stimulating, so he should start acting more upbeat, even if he won't feel it right away. It takes some time to lift someone out of a depression.. The brain chemistry changes dramatically.

      This disease does take a tremendous toll on one. When I developed it the first time, I was a single mother working full-time, going to grad school with no family support nearby. I just had to get better... Tincture of t Time is Mother nature's best healer.

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    • Posted

      Sorry,

      I was not finished...

      Men especially are not great at waiting, for anything, including healing, and that is precisely what he must do. Accepting that this is a day by day process with no guarantees is a good beginning.

      There are no guarantees that his eye will recover fully, but hopefully, it will. He perhaps needs to become more independent and self sufficient. If he were more active, he might feel less depressed. I say this as I know how it is to have chronic pain from various sources and have cabin fever. Florida heat, notwithstanding, he certainly can do somethings around the house to feel useful. Remember, I have had Herpes Zoster-Shingles in my eye twice, as well as numerous ear episodes, so I am empathetic to his pain, and I am a"Master at Depression" as my twin calls it....I understand it too well.

      If he is tolerating the Percocet taper, then he is not having the same level of pain.

      I would try the Tylenol PM, as you taper down, but don't over do it with the Tylenol.

      I hope I have helped you, Lisa. It is difficult to be the caretaker of someone who has been very independent and now is scared and depressed. This too, shall pass. It did for me.

      You are extremely loyal and compassionate, Lisa, and an excellent Nurse towards your husband....it is wonderful to see this level of devotion.

      Perhaps it is time for him to start doing more for himself.....it is lulling for a man to be cared for by his wife.

      All my Best,

      Keep me posted

      Merry Juliana

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    • Posted

      Keri, I live in Oregon where medical marijuana is legal, in fact I think all of it is legal, even recreational, this is a very liberal state ( unfortunately in some ways:-)  I am 84 and didn't get the shot, and reading this forum, feel very lucky for my episode, because it was on my left back, no blisters, just little heat rash looking stuff, but still very itchy and painful, like a severe sunburn.  I was put on Prednisode in the AM, gabapentin for the nerve pain, an anti viral med for a week and IBUPROFEN.  I would not take Tylenol under any circumstance for myself, because it can damage the liver. The doctor put me on the prednisone, antiviral, 3 mg. gaba 3 x a day with 2 ibuprofen tablets.  My pain and tenderness is still there after 6 weeks and its incredibly tiring and emotionally draining, even with this mild case.  I plan on getting the shot as soon as this heals, according to my doctor.  I am blessed not to have had it in my eyes!!

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    • Posted

      Helen, 

      Maybe you or one of your family members can go to one of the green shops and get some of the medical salve.

      It has helped me immensely. My husband picked it up for me out of desperation. You don't need a medical card to get it and it is fairly reasonable price wise. 20-35 depending on the size. It helped me more than anything else, with the pain and itching and helped with the healing. It had a light amount of the THC but mostly the CBD, which is the compound that helps with healing, pain and inflammation. 

      I also live in Oregon. 

      Good luck.

      Kerril

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