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
kerri41688 lisa46244
Posted
The 'lightening' description of pain is so accurate. I've been dealing with shingles on my head and left side of face and left eye for about 8 weeks. It does get better. I used ice packs, lidocaine, pain meds, anything for relief. Saw the eye Dr every week.
I think it varies from person to person on how long it lasts and with the eye area involved, from my experience, it takes longer. Keep in contact with the eye Dr and do not hesitate to go back and see them. In my opinion,they should be checking his progress on a regular basis
I am now dealing with this amazing fatigue that will not resolve. Some days I can almost function normally. Other days, like today, not so much. I have to plan what I am going to spend my time on and ration my energy. Taking a shower and getting dressed can wear me out completely.
I don't ever remember being so sick with anything, ever.
Merry19451 kerri41688
Posted
I ration my activity daily... otherwise I have been known to sleep 26 hours straight.
My phrase of Herpes Zoster-Shingles pain in the ear is giving birth via the ear canal while having a cattle prod inserted, or more modern, being tased, or electrocuted via the ear.
All My Best
Merry Juliana
lisa46244 kerri41688
Posted
Merry19451 lisa46244
Posted
There are stronger Opioids, but would have to be used with great care. I fully understand the torment your husband is experiencing. I would call his internist and ask with whom you can consult for pain control.
Merry Juliana
lisa46244 kerri41688
Posted
Merry19451 lisa46244
Posted
Another patient with itchy face stopped all sweets and candies, and the itch disappeared..
Merry Juliana
lisa46244 kerri41688
Posted
Kerri,
My husband feels like the pain has settle in his eye. We are at 8 weeks now. Did you have that? What is the recovery like? Just curious since you have a similar experience. The fatigue does hit him everyday. He finds when he moves the pain is more palpable. I'd like to share your story with him, especially since you say it does get better. How did you resume life again? He's never been this sick.
silverback57 lisa46244
Posted
I am so amazed at the variations of this stuff. I try to explain it to people and hear things like "my husband had it and its not so bad" or my dad had it and he was miserable" and "really? You can get it on your face" then I hear about people who had / have it on their face and every one is different. I think with the variations of sensory function all located on your face / head, ears, eyes, nasal, mouth, teeth and any mix or match plus more, its really anyones bet as to what you get, where you get it and how much it impacts your lifestyle.
I have a pretty good tolerance to pain and have most of one side my face and head involved with this stuff and its no fun. I try not to let it consume me but in all honesty, it sucks and my biggest drain is the loss of sleep. If I could sleep a full night I think it would be much more tolerable.
desiGal1224 lisa46244
Posted
Week 1:
I had a lightning bolt like flashes of excruciating pain in my right eye, almist every 5 seconds. On day 3 of pain, went to walk in clinic, got sent to urgent care, got sent to emergency room. Nobody could diagnoze and sent me home. Pain was so bad,
went to an eye clinic and the doc there suspected Shingles but wanted to see a rash. Finally on day 7 of pain, I got rashes. On my right, and on the tip of my nose, on my eyelid, in my eye and so on. Mother of all pains. On day 7 of pain, got on valtrex.
Week 2:
Felt better, scabs started falling off, pain was under control, started chores around the house..Eye was swollen, eye lid was swollen and droopy
Week 3:
Felt very sick again, and was told by eye doctor there were lesions in my eye again. Then the PHN burning pain started. I was alone in my room and I had a 40 second bout of burning where I felt my face was on fire. I wante to throw up, could not make a sound, just breathe and count seconds waiting for the wave to pass. It started at the bottom of my face and slowly made its way to my scalp and then went away. The next day, I had the wave, at 1 AM. It was excruciating. Ran to the doc the next day, got on valtrex again, steroid 4x a day. Eye was still swollen and droopy. All the rash was gone and what was left was greyish black sponts and swelling on the right side of my face.
Week 4:
Started having blurred vision and was diagnosed with Iritis, was given drop to dialte my pupil for relief. Light sensitivity, tearing, swollen right side including very puffy drooped eyelid. Took two weeks off work and got on Lyrica 50mg. Now have regular mild burning pain but not the scary 40 second wave of pain.
Week 5:
Today is first day of week 5. My enegry level is somewhat back. For the past 3 days I have been watching TV and working on my computer without glasses. Wearing glasses makes it harder for me and brings back pain as the glasses rest on an area that had the rash and then my entire eye hurts.
I can understand what your husband is going through. I hope he feels better soon.
I want my pain to go, swelling to go, and want my eye to look and feel normal again. My doctor says the eye puffiness is because of nerve. Biding my time for things to get back to normal.
jane97743 desiGal1224
Posted
There are so many stages to shingles, but I didn't keep track of them as you have, it is over 4 months since I was diagnosed and although I have no pain now, my itching eye is HELL and all the eye drs ever say is use face cream on the eyelid, which is much too painful!! Products used on the forehead cannot be used on the eyes, and the drops do not stop the itching, I really hope for your sake you do not get this complication!
desiGal1224 jane97743
Posted
A friend of mine came by with dark chocolate, advised me to vegetate and watch TV and eat chocolate. And I did for two days. Also noticed I had pretty bad PHN itching that I did not have before. Off chocolate now and itching is a bit better.
desiGal1224 jane97743
Posted
jane97743 desiGal1224
Posted
I didn't really get swelling but in the mornings my right eye is a bit puffy just above my eyelid.
kerri41688 lisa46244
Posted
This stuff is HELL.
I'm eight weeks and it is a lot better but still dealing with left eye and extreme fatigue.
I still have to use the steroid eye drops at least 5 times a week. It helps with the pain and burning and irritation. I also had some pressure type pain in that eye, so eye Dr gave me a drop that is for glaucoma, even though I do NOT have glaucoma. It relieves the ache from behind the eye.
Good luck.
jane97743 kerri41688
Posted
Hi Kerri,
I don't get any relief fron the itching with the steroid drops I'm on and it is 4 months since diagnosis. i didn't get the itching at first so much, it was the complication after shingles, it IS hell and it woke me twice in the night last night too.It also itches above my eye.It gets very depressing after so long!!
desiGal1224 jane97743
Posted
For the PHN itching, have you looked at your diet to see if it makes you itching worse or better? I found that chocolate intensifies my iching. Eliminating it made my itching come down to 10% of what it was.
jane97743 desiGal1224
Posted
it doesn't seem to make any difference, I have had no chocolate and it's actually got worse!!
kerri41688 desiGal1224
Posted
I had to give up chocolate almost a year ago, due to veritigo type migraine that I have developed. Never was prone to headache or vertigo in my life. So that's been a not too fun adjustment.
Today, I decided...mentally, I had to get some stuff done, so I cleaned up the kitchen really well, and then went grocery shopping. By the time I got back (yeah, it exhausted me) and put a roast on the grill, I was having those lightening shooting pains going down my face and into my cheek. I guess that is my signal to back off and take it easy.
I am not good at dealing with this. I want to power through and be normal. That's how I've always dealt with things, and this is hard...I'm about an old lady 62, and this shingle episode has set me down and put
me in my place. I'm not taking it very well. Grrrr.
jane97743 kerri41688
Posted
Where did you have the shingles and for how long? I was diagnosed in March, and although the pain was excruciating at times, I did manage to control it with strong painkillers, and I got sleep through taking amitriptyline, but the itching in and around my eye is by FAR much worse as there is nothing to help it. Each time I visit the eye clinic, i ask for something to stop the itching, it is HELL! All they say is that it will stop, and to put any face cream on it, are they kidding?!! anytihng on the eyelid stings as it is now sore from having to rub it. ( it's impossible not to!) I tried cream with no fragrance etc, it is possible to stop the itching on my forehead with anti itch cream, but this must not be used around the eye area, I have tried taking antihistamines too and they didn't help at all. This is ruining my life! The only time I get any relief from it is when i am working or with people and focusing on other things, which isn't always easy as i live alone! Please can anyone help?!!
desiGal1224 jane97743
Posted
I discovered desserts/sugar makes me itch.
I stopped all sugars and the itch just went away.
Thought its worth sharing.
Hope you are doing better.
jane97743 desiGal1224
Posted
Thank you, I will definitely try that, although I don't take sugar in drinks I do sometimes have cereal with sugar, but I don't mind cutting out sweet things as I am more into savoury food so it shouldn't be too difficult! I will try it and let you know how it goes!
Merry19451 jane97743
Posted
Please do, as I think of you often, as I am an itchy girl, well, older lady, myself....not fun...
Merry Juliana
jane97743 Merry19451
Posted
jane97743 Merry19451
Posted
Hello Merry
I just want to ask if you can advise me again about the problems with my sore eye, Although I have been told that the shingles in March 2016 have not caused vision loss, I am worried that the longer I have a sore and itching eye, the more likely there might be vision loss eventually? , I do not have to go back to the eye clinic for a few weeks, but each time I just get given various drops and gel for my eye but nothing will improve it, Any ideas? I have even tried antihistamine drops but nothing works! It's all getting very depressing now!