I have PHTN, and recall reading somewhere a post from someone who went blind in one eye because the herpes zoster virus went into the optic nerve. Has anyone heard of this? That is truly scary - if pain, dryness and light sensitivity weren't enough!! Thanks - Susan With The Light-Sensitive Eyes (wishing I was Jeannie with the light brown hair)
Hi, From my memory this is not common. It's always good to get the appropriate treatment for Shingles within 2 days of onset. I've seen that there is an injection to help prevent attacks, even if you've already had shingles, but in the uk you have to be elderly to get it on nhs. Google it and the info will be better than my memory!
I was originally diagnose with TN, but after doing a little of my own research I reached the conclusion that my condition was something different. I consulted another doctor who did some tests and confirmed that I did not have TN but the herpes zoster virus inside my trigeminal nerve. Like a normal cold sore it manifests itself when I’m stressed, sick or tired but the only visual signs are cold sore type wounds inside the nose, which usually block the nose completely. The nerve is usually inflamed for about a week, and my face generally feels like I’ve done a few rounds with Muhammad Ali. On the plus side, I don’t get any sores on my lips.
I’m losing my sense of smell because of the scaring inside my nose, so I don’t doubt that it could cause blindness in someone who has it in their optic nerve.
Hi 'Like a Punch to the Face'!
That's exactly what I believe mine started from, but the docs said 'NO' because I didn't have the blisters outside my face and hadn't had shingles before. Yes, it's just like your face was used as a punch ball, and a few weeks later I had the shooting and sudden thumps in the head to accompany the rest, and then, two separate sides of the body with shingles to join in the fun!!.
Anyone who has had chicken pox then has the shingles virus dormant in their Trigeminal ganglion and clearly is can be provoked into action by various triggers, as with herpes simplex on the lips can. Mine came on the day after having grommets in my ears (for a few simple annoyances! but they were taken out after a few weeks in case they had caused the pain), but alas, it seems they'd triggered the shingles. That's my best answer and the docs have none. Perhaps they are quiet because I ought to have quickly received the shingles treatment originally if they'd considered it! They kept giving me different anti-biotics which quite possibly helped me to feel worse still, even though one is already feeling suicidal! Thanks for encouraging me in my own belief. I find that the nose blisters are helped by Zovirax, even though they are different herpes, (I buy a cheaper version called Pinewood cold sore cream) and unblocking is helped by Olbas nasal stick. Very best wishes, Dove.
Like a punch to the face. said:
I was originally diagnose with TN, but after doing a little of my own research I reached the conclusion that my condition was something different. I consulted another doctor who did some tests and confirmed that I did not have TN but the herpes zoster virus inside my trigeminal nerve. Like a normal cold sore it manifests itself when I'm stressed, sick or tired but the only visual signs are cold sore type wounds inside the nose, which usually block the nose completely. The nerve is usually inflamed for about a week, and my face generally feels like I've done a few rounds with Muhammad Ali. On the plus side, I don't get any sores on my lips.
I have been diagnosed in the past week with the "herpes viral erosion of the cornea". Using Zirgan every 3 hours, and it is improving but this has been a nightmare with the pain, dryness and sensitivity to light, fans etc.. does it ever subside?? I am into my 5 year mark with this awful disease, I had the cyberknife last May, 2013 and I could kick myself every day because the side effects are worse, I think.
Def sounds like someone screwed up on you and I am so very sorry. It sounds to me like you should still be on anti-virals. The meds you should have been put on as soon as you showed a rash. My shingles rash appeared 3 days after the terrific stabbing earache hit me. I was in more pain with the ear than I was with what my doctor called, the worst case of shingles she had ever seen. It took me forever to get well and I am left with the earache passing 3 years now from shingles on my Geniculate Nerve. I had Gamma Knife last April and although they can see the scarring and directed the radiation precisely at that scarring, it was unsuccessful. I had no ill affects from that surgery and may be eligible to try again with more radiation after April 2014
I have times where I feel the burn right where my rash was (no where near my face) and there are areas that are red and raised. I've often wondered if the virus might still be active in me.
I really appreciate the info on everyones cases. I know my brother had shingles on the face and they immediately gave him a shot to stop the spread. They told him if they got to his eye they would most assuredly cause blindness. I know they constantly warn you not to touch your rash and then your face while you are active w/shingles. My rash was on my L thigh. My Geniculate Nerve behind my left ear was affected/had herpes at the same time.
This is my question. If it happens so often....why do doctors fight the idea that shingles can go internal and actually be ON the nerve. I fought with my doctors AND specialists on this idea, yet found ENT's and Neuros who knew exactly what happened and told me how very sorry they were. I had one tell me I was screwed!
Thanks again....
Dove said:
Hi 'Like a Punch to the Face'!
That's exactly what I believe mine started from, but the docs said 'NO' because I didn't have the blisters outside my face and hadn't had shingles before. Yes, it's just like your face was used as a punch ball, and a few weeks later I had the shooting and sudden thumps in the head to accompany the rest, and then, two separate sides of the body with shingles to join in the fun!!.
Anyone who has had chicken pox then has the shingles virus dormant in their Trigeminal ganglion and clearly is can be provoked into action by various triggers, as with herpes simplex on the lips can. Mine came on the day after having grommets in my ears (for a few simple annoyances! but they were taken out after a few weeks in case they had caused the pain), but alas, it seems they'd triggered the shingles. That's my best answer and the docs have none. Perhaps they are quiet because I ought to have quickly received the shingles treatment originally if they'd considered it! They kept giving me different anti-biotics which quite possibly helped me to feel worse still, even though one is already feeling suicidal! Thanks for encouraging me in my own belief. I find that the nose blisters are helped by Zovirax, even though they are different herpes, (I buy a cheaper version called Pinewood cold sore cream) and unblocking is helped by Olbas nasal stick. Very best wishes, Dove.
Like a punch to the face. said:I was originally diagnose with TN, but after doing a little of my own research I reached the conclusion that my condition was something different. I consulted another doctor who did some tests and confirmed that I did not have TN but the herpes zoster virus inside my trigeminal nerve. Like a normal cold sore it manifests itself when I'm stressed, sick or tired but the only visual signs are cold sore type wounds inside the nose, which usually block the nose completely. The nerve is usually inflamed for about a week, and my face generally feels like I've done a few rounds with Muhammad Ali. On the plus side, I don't get any sores on my lips.
I never had shingles on my skin. I had chickenpox when I was 39, it was so bad I turned yellow. In 2001 I developed PHTN in my eyes and left side of my face due to stress. Herpes zoster virus in my trigeminal nerves in my eyes, face and teeth. I took an anti-viral and Neurontin and it went away, it only returned intermittently and if I took a few Neurontin it went away. I had a very stressful event in 2010 and it returned with a vengeance. I've been dealing with that since then. I can't take Neurontin as it irritates my sensitive GI tract (but it does make the pain go away completely). I was on 3 Lyrica a day for several years and that helped, I stopped it to see what would happen, I was in remission for 4 months, then the pain started again. I am currently on 100mg Lyrica, one pill a day, to keep the virus at bay, but I still have horribly dry eyes. I don't know at what point the dry eye pain and PHTN pain separate. I am seeing an eye doctor next month to get help with dry eyes, then if that makes the pain go away, I'll know it was the dry eyes causing all the pain. I wish I would have had shingles on my skin, at least that is something people can see. It's the old "you look fine" syndrome. People have no idea how much pain "shingles" in the nerves in your eyes can cause!
How did this get diagnosed? I can't stand to have my eyes dilated, I had a horrific reaction to having my eyes dilated while having an active nerve inflammation. (See my page for the whole story). I have no obvious problems in my eyes, I think there is something different between a herpes zoster viral infection in the eyes and the same thing in the nerves of the eye?
ktznana said:
I have been diagnosed in the past week with the "herpes viral erosion of the cornea". Using Zirgan every 3 hours, and it is improving but this has been a nightmare with the pain, dryness and sensitivity to light, fans etc.. does it ever subside?? I am into my 5 year mark with this awful disease, I had the cyberknife last May, 2013 and I could kick myself every day because the side effects are worse, I think.
In rare cases, shingles have been known to cause blindness. Please note though this is rare.