Husband has shingles on face and eye - need advice
Posted , 11 users are following.
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.....
2 likes, 93 replies
jane97743 lisa46244
Posted
I hope for his sake he doesn't get the itching in his eye when the shingles has finally gone, I was diagnosed in march and now in August my eyer itches like hell every day, it is so much worse that any pain, as pain can be controlled. I too had terrible pain before the rash and was not diagnosed until the rash appeared,which was around 5 days later, The eye is by far the worst place to have shingles and mine became re-infected too. I wish you luck with it, but it can really ruin lives!!
lisa46244 jane97743
Posted
The eye itching is awful. We've been using Zaditor, an antihistamine drop for the eye, and it seems to be working. Just wanted to share this information.
jane97743 lisa46244
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lisa46244 jane97743
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It worked immediately. It blocks the antihistamines in the eye that often cause the itching. The eye neurologist thought it would be better than taking Zyrtec, but you can try that too if this doesn't work.
lisa46244
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jane97743 lisa46244
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Unfortunately nobody can tell you how long this will go on for, as even dtrs don't know! I have had it for months and i was diagnosed 5 months ago, Nothing stops my eye/forehead and eyebrow itching, where the rash had been, it is a complication on shingles sadly, and makes life a misery sometimes! I wake up every morning to my eye itching like crazy, and then if I rub it , it just goes sore and my eye looks "cloudy" I have treid antihistamine drops and even they don't work, I do sympathise, as men tend to make more fuss than women!
lisa46244 jane97743
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jane97743 lisa46244
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It comes and goes, starts as soon as i wake in the morning, and then is ok for a while and usually sometime later it starts up again, the more I rub it the more sore it gets, but sometimes the itch is so bad that I can't just ignore it. Sometimes my eye looks a bit dull (cloudy) when it is sore, I just carry on with all the drops and gel and hope it will stop asap!! I find it's better to keep occupied as then I don't notice it so much, but when I am on my own in the evening it's worse. Good luck!
jane97743
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I don't have to go back to the eye clinic for 12 weeks, but if my eye gets worse before then. I will have to go
jane97743 lisa46244
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lisa46244 jane97743
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jane97743 lisa46244
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I find that Lanacane is quite good for that, but of course that can't be used by the eyes and that is my problem, nothing works for me!
lisa46244
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My husband is approaching 8 weeks post shingles this weekend. He had nerve blockers on his forehead and around the eye. He is off all percocet now. Taking gabapentin, carbamazepine and cymbalta. Lidocaine patches as needed. Tylenol PM at night. Pain still lingers and moves on head. When it hits the eye it debilitates him. Is there any end to this agony? It is so hard and I try to be strong but it's hard to watch him in pain. Will this pain ever subside? I am hoping some of this pain is the healing process. Anyone have advice.
Merry19451 lisa46244
Posted
Lisa,
How often is he having the excruciating pain that takes his breath away, how long does it last, and is it less frequent than two weeks ago? Should he be restarted on an Opioid?
Or...
Is he in constant pain without letup, with bolts of agonizing electrical pain? Like the beginning of the Herpes Zoster-Shingles?
It takes literally months to recover from this, and the neurologist should be titrating his medication according to your husband's needs, not to any preset schedule...
It is very difficult to see and care for someone you love suffer....it is hard to live with when the progress seems infintestimally slow.
My best wishes
Merry Juliana
lisa46244 Merry19451
Posted
There is a level of constant pain on the right side of head. Shooting pains come and go. We want to stay away from Opiods. My husband is so depressed and can't function, work, etc. Not sure what to do. Should I just keep waiting or should I seek a different medical center. Is it too early to really know? I am so sad and hoping he can get relief and get back to his life. He can't come to terms with living with this pain. Are there specific medical centers that treat PHN?
lisa46244
Posted
One more question...I read a lot about Trigeminal Neuralgia. That is different from PHN, right? TN scares me and the stories are awful. Can you tell me the difference between TN and PHN? Is there overlap?
Merry19451 lisa46244
Posted
Hi Lisa!
He was diagnosed with Herpes Zoster-Shingles as he had the vesicle-blisters around his eye area, plus the preeruption symptoms. His pain is that of Herpes Zoster-Shingles, in which he was in constant pain with episodes of lancinating pain.
He has fatigue and exhaustion, as well.
In Trigeminal Neuralgia AKA Tic Doloreux, the only symptom would be the severe lancinating pain that is like an ice cream head ache, usually radiating to the jaw, and very occasionally, to the eye area of the first branch of the Trigeminal Nerve. The pain lasts 2 seconds to 2 minutes, but can occur many times a day. It is treated with Carbamazine, which is highly effective. Your husband is already taking that medication, I believe.
Your husband has Post Herpetic Neuralgia PHN, not Trigeminal Neuralgia.
May I ask your husband's occupation? Is working extremely stressful for him?
Has he felt any improvement since this illness began?
Sometimes, with a more severe disease, recovery is measured in baby steps.
I hope the explanation helped...
If you have any doubts about the diagnosis, please take him to the neurologist.
Best wishes
Merry Juliana
lisa46244 Merry19451
Posted
Thank you Merry Juliana. Your explanation was very helpful. He is slightly better today than 2 weeks ago. Baby steps. When the pain settles in the eye it is a bit more difficult. His exhaustion and fatigue is still present. My husband is a financial advisor....stressful job. He is also a "stressful" person and worries a lot. This has been a wakeup call for him. I am going to have him try meditation as a life skill to help with his breathing and stress management. My husband is upset because last Friday he was pain free for 3 hours and then it all went away. It's very discouraging. No one (except me) understands his condition. Friends and family ask how he's doing and it's hard to keep saying "bad." They don't understand. It's like people are tired of him being sick (if that makes sense). Me too, I want him to feel good and keep going upward. This is more like a roller coaster. Hoping this ride ends soon.
Merry19451 lisa46244
Posted
Lisa,
My knowing his occupation helps give me insight into what he is used to dealing with in life...ie the cold hard facts and figures of the financial world, fast results, yes and no answers; rather than the world of medicine in which every system is intertwined, there are sometimes no answers to a patient's questions, and the psychological effects of agonizing pain are enormous. He is better than the initial week or two, and the healing from Zoster-Shingles in the eye or ear is much more complicated and protracted than other parts of the body.
The only words of comfort I can offer is that this too shall pass. I do not know when, and it takes baby steps, but it will. Recovery is a slow process according to Mother Nature's timeline. It can't be rushed... Tincture of Time is a great healer....
His stressing out over it and anxiety feeds into the pain cycle. If he can find and capture un etit