Shingles in eye, extreme light sensitivity 26y/o
Posted , 7 users are following.
Long story short I just got over my first experience with shingles on my cranial nerve and face and in my eye now my eye is extremely light sensitive and it's been two weeks since I could go outside. has anybody gone through this ? How long did it take you to get over the light sensitivity ? (I've seen some threads on here everybody seems so nice any advice will help.)
Please ignore my grammar I'm using text-to-speech
Now the long story... I was sitting at my nephew's party when a horrible headache came on just a stabbing pain behind my eye every minute on the minute it never went away it just getting more intense an the next night I couldn't take it anymore so I drove myself to the ER and nobody could tell what was wrong with me and took me 4 ER trips in order to be admitted my parents at that time was not going to let me leave without getting admitted. They check me for aneurysms Strokes brain tumors the whole works I was so stressed and terrified and thankful all those tests came back negative they had me scheduled for sinus surgery the next morning because they couldn't fathom where the pain is coming from. Finally by tooth and nail they Dragged In A ophthalmologist who diagnosed me. At that time I was given IV antivirals and Gabapentin for the neuralgia. At the end of this I was released and able to see fine. I ran out of my antivirals for two days and I woke up one morning with extreme light sensitivity and it has been 2 weeks since I have been able to drive I have dropped out of school and I have lost a lot of my Independence due to this condition. I have gone to my opthamologist who prescribed me corticosteroid drops and antivirals as well as antiviral drops. Nothing seems to be getting better in a nutshell well actually not in a nutshell he told me straight up the nerve is fried I'm going to be like this for the rest of my life. Just keep your glasses on and go on with life. Of course I'm 26 I feel like I have the whole rest of my life ahead of me and I just start bawling my eyes out. He was very blunt and rude. Whatever drops he put in my eye allowed my eye to open up one hour after his office visit it only lasted about a half hour to 45 minutes but I was able to see for once in two weeks. Therefore it gives me hope that it will get better in time and it is not permanent. I do not believe I will be going back to his office and I will be going to get a second opinion at another opthamologist. I do archery for sport and I want to finish school to be a teacher I have so much ahead of me I feel so depressed and lost somebody please help me
2 likes, 51 replies
Merry19451 april66508
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I am sorry you were treated by an arrogant physician. Where do you live? You need to find a specialty ophthalmologist who deals with your exact problem.
Go to an Eye Institute. If you live in the States, I Might be able to direct you. I have had significantly eye problems.
Merry Juliana
april66508 Merry19451
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Merry19451 april66508
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Ok, April... I see you live approximately 2-1/2 hours from OSU in Columbus. I strongly urge you go there to "Wexner Eye Institute" and call for a specialist ophthalmologist dealing with Zoster Ophthalmicus. Tell them you have severe photophobia, and your current ophthalmologist doesn't know what to do, that you are in severe pain. You will get an appointment ASAP. I don't think your current ophthalmologist is up to date.
You need to get to a EYE Institute within a University Medical Center with multiple subspecialties. Usually, University Medical Centers are more collegial, and work together to solve the patient's
problem.
I hope this helps.
Please let me know how you make out.
Merry Juliana ??
april66508 Merry19451
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april66508 Merry19451
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Merry19451 april66508
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Osu Havener Eye Institute at Wexner Medical Center OSU
Columbus Ohio
BTW, I have found the more incompetent people are, the nastier they are.
This especially includes surgeons, physician, and nurses.
Merry Juliana
april66508 Merry19451
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tiffany60896 april66508
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Hi April,
I just wanted to respond to try to calm you. I can tell you are full of anxiety about your ordeal with shingles. Like all of us on this forum, I have been struggling with shingles and mostly with the after effects of it such as PHN nerve pain. Stress and the anxiety of thinking you will never be well again, can hurt your ability to heal.
Please don't let the ignorance of one doctor destroy your hope of leading a normal life again. Most doctors know very little about shingles especially about how every person reacts differently to the virus. You may have a complete recovery because you are young. I know that my nerve pain is very slowly getting better as well as my energy levels after having a serious case of shingles several months ago. It may take several months, but you may recover completely from your illness. If you are left with pain and problems associated with shingles, the pain and after effects may lessen over time so that you can still lead a normal, happy life. There is always hope!
Good luck to you.
april66508 tiffany60896
Posted
I was surprised to see you say about getting your energy levels back after several months.. I wasn't sure it was just me! I am zapped of my energy completely..sleeping all day. my parents or my fiance will make me walk a mile once a day at the park so I'm not completely bed ridden .. After that I collapse with exhaustion. sometimes I will get spurts of energy throughout the day but doesn't last long at all. well it sounds as if dropping out of school was a good choice, this may be a long road... with hope!
Jane1618 april66508
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Hi April
I know how you feel as I had shingles in my right eye in March 2016, and forehead and head, it's the worst place to get it the Dr told me and I can quite believe it, as the skin is very sensitive around the eye area, I still have itching and a sore eye every day and it is now over a year ago, my forehead became re-infected and unfortunately I got PHN . I do have various eye drops and gels but nothing seems to cure it I have learnt to live with it and I find that keeping busy helps to take my mind off it. I have no pain, it;s really the itching eye socket and sometimes the actual eye that gets really sore from rubbing it (hard not to sometimes!!) I did get the watering of the eye for a while and couldn't drive without wearing sunglasses but don't worry as that does stop after a while, it's called dry eye and you need to see a good eye specialist to get the right meds etc! I also got double vision for a while which was very worrying but that also subsided eventually, my vision was not lost, and that was my main worry from the beginning! I really hope things improve for you soon and that you can see someone who will be more helpful .
april66508 Jane1618
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The eye socket itching.. ahhh it is something fierce! I was fine when I got out of the hospital with shingles.. the itch socket itching started at night and I rubbed and rubbed...pretty sure that's why I'm in this mess to begin with! this is very helpful and hopeful.. thank you!
valerie03145 april66508
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Hey, April! So sorry you are going through this. Your story is so much like mine, and it is the first time I've seen someone else post about the extreme light sensitivity. It's more than dry eye! I was diagnosed with shingles on January 23. I thought it was getting better after 10 days and that I was ready to go back to work. Then the stinging, itching, sensations of little bugs crawling all around my eye and eyebrow and horrible light sensitivity really got bad. Not only could I not tolerate light, but even in dim lighting, I couldn't look straight ahead. Couldn't use a computer or watch TV. If a family member picked me up in the car, I had to put a jacket over my head to block out any light at all. After a couple of weeks of this, my eye doctor told me he'd never heard of not being able to look straight ahead and said the light sensitivity may last weeks or months. I was so depressed and thought I could lose my house and job because of shingles. Luckily, I started noticing improvement a week later! I could go outside just before sunrise and sunset. I started driving again at that time of day about one months after shingles was diagnosed. So for me, it started 1/23. I could drive just before dark by 2/23, and I could drive on a sunny day with 2 pairs of dark sunglasses on at the same time by 3/2. It was another week or two after that before i could use a computer or watch TV. It was probably May or June when I started feeling more energetic. My eye still bothers me daily, but it's a minor thing now. I sometimes get a little sharp sting that's very brief and sometimes have a little itching or tingling or burning sensation.
By the way, I used gabapentin 300 mg (4x/day instead of 3) during the worst of this. It took the edge off the crazy nerve sensations and helped me not feel so stressed! So hang in there! You may be just days away from seeing some improvement!!
april66508 valerie03145
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I am so thankful to come across this reply I have not had any success finding anybody who have had the same symptoms as I had. All I want is to be able to go outside and see again and just like you said I cannot see forward I can look at the ground but nothing more than that. but I'm glad to know that it hopefully for me will get better. I was fine until the itching above my eyebrows started like bugs crawling on my face like you described then I found myself scratching in the night and rubbing my eye in my sleep. and here I am almost the same exact story. Thank you for giving me some hope and everybody for posting such positive hopeful advice. Are you still on gabapentin after all that time? Thank you so much
Merry19451 april66508
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April,
I am glad that Valerie's eye symptoms, which seem to parallel yours, improved dramatically, albeit slowly. My own personal and professional recommendation is to see the ophthalmologist specialist at OSU in Columbus. You certainly need close follow-up regarding Herpes Zoster Shingles anyway. Drop the ophthalmologist who was arrogant.
Again,
Best Wishes
Merry Juliana
april66508 Merry19451
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april66508
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and when you were able to watch tv were you able to look forward outside? It seems after two months you could watch tv. ( switch to me at night those LED lights from the TV are the worst) so what do you say after 3 months you were able to go outside without sunglasses on? I know we're both different but I'm just trying to see exactly how long it took you
valerie03145 april66508
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Hey, April. I stopped taking the gabapentin by the time I was able to drive with sunglasses on...around March 3. That's about the time I could both look straight ahead and watch tv. I was able to go outside on a sunny day without sunglasses a week or two later. So it was close to 2 months from the very first symptoms of shingIes to things being good again!
I so dreaded evenings. My day was over as soon as it got dark outside. I would try to listen to the tv to stay awake until about 10:00 so that I would not be awake all night. I really feel for you and what you are going through right now. By the way, I found that rubbing coconut oil all over the affected area sometimes helped a little with the itching. I even rubbed it into my scalp about 15 minutes before washing my hair. It seemed to calm it a little.
When did shingles start for you?
Since my case started, I've been following Merry's wonderful advice about watching the lysine to arginine ratio in foods, and I take a multivitamin and vitamin C daily. I also keep getting my eye checked even though my doctor said he doesn't need to see me anymore. There is some mild corneal scarring, and I want it monitored! I don't think many eye doctors really understand this virus.
I hope you have a great experience with the doctor you see! Let me know if he can explain the issue with not being able to look straight ahead. And keep me posted on how you are doing!
april66508 valerie03145
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That is so interesting my mom also found the lystine and arginine ratio and vitamin C. She also is incorporating B12 which may help. Merry has been so very helpful and suggested OSU's eye institute or an eye institute that specializes in multiple areas of the eye. I am too worried about my cornea since the optometrist that's all me before the jerk opthamologist said I had a corneal tear.
My shingles symptoms started on August 6th but I didn't have any eye trouble until August 19th. I also enjoy listening to TV during the day because I get really tired on and off and sleep quite frequently..but once it gets dark out I can't have the TV on because the lighting from the TV overpowers the room and goes right through my eyelid!
I also have been using coconut oil which my mom suggested! and I believe it has helped a ton. With itching the lidocaine cream is the only thing that helps and it only helps for like 5 minutes.
Right now to help with the neuralgia and inflammation my mom's all is wonderful doctor who works with cold laser therapy for people with post-herpetic neuralgia. I had my first treatment last week so I'm curious to see where this takes me.
Once I get a new ophthalmologist I will let you all know what they say!
april66508 Merry19451
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Merry19451 april66508
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Hi April,
If you have a corneal tear, request a corneal specialist.
As a Nurse Practitioner, I study and read articles and texts, including ophthamology.
I also possess enormous curiosity and a vast range of experience, 44 years. I have diagnosed patients with eye emergencies and sent them to the ophthalmologist STAT.
Personally, I have had shingles in my right eye twice (the sensory nerve roots of the ear, where I usually get shingles, and the eye are adjacent to one another...Talk about a whopping headache! LOL. I also have had scleritis, an extremely serious and dangerous condition in both eyes multiple times. Also painful, but a boring type of pain.... I learned with scleritis and herpes zoster shingles that general ophthalmologists can quickly be out of their comfort zone and the need for a specialist STAT. I also had a tumor next to my right eyeball/nose that was benign, but "highly invasive- can spread to the brain quickly. The plastic surgeon who removed it was incompetent and arrogant, and it became infected. I then went to a University Medical Center highly rated oculoplastic surgeon and he excised more, debrided the area, and followed me for months until the huge hole by my eyeball healed. He was excellent and kind. I am eternally grateful to him.
I also developed cataracts earlier, and had them excised, and an intraocular lens inserted. That was minor, in comparison. I now have bionic
eyes.
Merry Juliana
april66508 Merry19451
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Oh my goodness you have been through so much with your eyes I am so glad that you're doing so well now it sounds like. I'm glad you can share your wealth of information and spread it on to others. The headaches from the nerves in the head from shingles are no joke I've never experienced such pain in my life... I cannot imagine that tumor must have been terrifying but to know it was benign and everything was okay such a blessing I am so glad you healed so well. And I think bionic eyes is an understatement haha. I'm so glad to know your story and get to know you a little better thank you so much for all your kind words and advice! stay strong!
Merry19451 april66508
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I am an optimist, fortunately, and fight to recover to maximum potential. As my Herpes Zoster Shingles was not diagnosed in a timely fashion, I am determined to help others and be supportive. I was in agonizing pain, to say the least, and have the frequent recurrent episodes of Herpes Zoster Shingles due to two incompetent ENT physicians. It was their arrogance and mean demeanor that hurt. They accused me of narcotic seeking, although I didn't ask for any, due to the severe agonizing pain. The rash took 3-1/2 weeks to appear in the ear canal, on the external side of the eardrum.
But, you learn to move on, what
works best for you, etc. This site is great regarding the support from so many people. It is very healing.
Best Wishes
Merry Juliana
april66508 valerie03145
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valerie03145 april66508
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I had symptoms for the week before the rash showed up and started a week of Valacyclovir within 24 hours of seeing the rash. After a couple of rounds of using steroid eye drops for the mild corneal scarring that cleared up and returned, my opthalmologist decided I was at high-risk for getting shingles again, so he put me on 500 mg Valacyclovir once a day. I'm supposed to do that for a year. I thought all my eye problems after the first couple of weeks were strictly post-herpetic neuralgia. The doctor thinks it is low levels of the virus still bothering my eye. I read there is currently a big study going on in which patients who had shingles are taking the low dose of anti-viral meds as my doctor recommended for me, so maybe that is the way to go. I wish the medical community had a better understanding of this disease!
Did your first treatment with the cold laser therapy seem to help in any way? I use lasers in my job as a dental hygienist and know they can do great things for the body's healing response.
I know what you mean about watching the TV. When I had it on at night, I had to drape something over my head to cover my face and block the light!
Hang in there, April!
april66508 Merry19451
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april66508 valerie03145
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Again please ignore my grammar haha I'm using text-to-speech because the phone bothers my eye so much!
I had my second laser today so I will let you know if I notice anything from this experience they say it takes two to three times in order to start noticing a difference although it does help with inflammation , I think my face is less swollen I'm not too quite yet. I did get a appointment at OSU that Merry recommended. So I will be traveling down there tomorrow I will let you know what they say. I'm very excited and very nervous at the same time. I would be perfectly comfortable if they just told me it does take a few months to heal but I am so scarred from my previous opthamologist I feel a sense of hopelessness. You guys really help me have faith and not all hope is gone , talking is very comforting. Yesterday I did have a Time where my eye did open for about a half hour without much irritation. I was able to see just about everything.. go outside, stay inside with the lights on, then it slowly went away and I'm back to square one. I feel like that is a glimmer of hope. I know I need to tell myself that time heals all because my head is still completely numb and part of my face is numb from the shingles. I'm slowly starting to get feeling in my face back maybe that has something to do with it
-April
valerie03145 april66508
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april66508 valerie03145
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Well I finished my appointment he wasn't as negative as the other guy thank goodness he was actually very insightful and let me know that the nerves do heal over time they just don't know how long and it may not heal 100% but it will get better in time. I guess that's all I can ask for I feel like I'm searching for a specific answer that is certainly impossible to get. Nobody could know that answer except God.. positivity!