I must be the only1............. - Herpes Message Board

headman076 · 10-28-2002, 05:25 AM

I must be the only person on earth that H occurrences affected only the left side of my face and mostly around the left eye. My 1st recall of it is around age 5 and it was much more frequent growing up. Until about the age of 11 just before puberty it would start as a tingle just under the left eye or temple area and sometimes spread along the entire left side of my face very painful, extremely unbearable itching to where my Mom would tie my hands down so I wouldn't scratch especially while sleeping. Then came the large watery blisters which would drain and scab and if a scab was rub off to soon left a scar. The breakouts were 6 to 8 a year. Then at about 11 they went up in occurrences once to twice a month but varying in severity. Sometimes lasting only a couple days and hardly felt more than the tingle, and it would be gone. But other times it took on an enormous swelling of the left eye area never in the eye itself, but around the outer eye. It would get so swollen I couldn't see out of it cuz it was shut tight from the pressure of the swelling. This was an all to depressing situation for a teenager ( like I didn't have enough I was going through at the time ). But the swelling type of H would start out the same as the blistering type , with a tingle some itching but never blistered, but the pain was tremendous and disfiguring. At 16 just before Christmas I had the worst breakout I had ever experienced in my life. The blisters and the swelling with presure hit me together I now liken that outbreak as being like the end of a fireworks show, everything exploding all at once it was the worst. But I say that because it was also the last time I ever had the outbreaks I had suffered for years with again. It was pain, itch, swelling, eye pressure. It gave me migraines headaches so severe and made me so sick I wanted to die. I don't think I could have lived with it anymore if that was how they were going to now be. But what I didn't know and why I refer to that episode as being like the end of a fireworks show is the explosive way it hit and then when it was over, it was truly over. I didn't have another for more than 2 years. That was the 1st time ever I had gone since I was 5 a whole year let alone 2 with out the trauma of H. As I got older the outbreaks lessend and I was free of them just like that with the last one at around 20 years old. I'm 43 now and the outbreaks are no more than the tingling maybe a very small spot or two that appear as no more than a mild blemish if at all. I have over the years tried to find articles, books, or anyone who had ever experienced anything like it and figured I must have been the only one.........

[This message has been edited by headman076 (edited 12-26-2002).]

TheOneInFour · 10-29-2002, 03:42 AM

Wow, that's a pretty amazing story. I'm glad you didn't go through with the suicide. You say you don't know what stopped you. I think in cathartic moments like that, other forces (for want of a better term) can step in and keep us moving through. You can call it God or angels or our Higher Self or our life force or the Cosmic Muffin, but there's something else that comes into play at those moments. It might not feel like the way it looks in the movies (lol) and it's not a magic wand to fix the problems of our lives, but I think it can get us through hard times if we listen and allow it to do that.

I haven't heard of someone getting swelling around the eye area, but then I don't know a lot about herpes on the face. (I have genital herpes.) I just took a quick look in "The Truth About Herpes" by Dr. Stephen Sacks but didn't see that particular symptom mentioned...but then it was only a quick look. I can't imagine that you'd be the *only* person to get that, but it would seem to be fairly uncommon, maybe even rare.

That sounds really awful that your Mom used to tie your hands when you slept. Do you feel it was a good thing for her to do that? It sounds kind of abusive to me, but maybe it was better than the alternative. It must have been devastating to live with that as a child and then into your teenage years (where it may have been aggravated by adolescent hormone storms).

Thanks for sharing your story.

TheOneInFour

headman076 · 11-01-2002, 02:03 AM

Thanks for the kind words OneInFour. I do think it was a good thing my Mom tied me down cuz if she hadn't I would have scratched my face raw and ooze from the liquid in the blisters would have spread from my hands to other parts. My Mom was extremely caring and careful. It was very strange, and I just thank God I haven't had even a minor breakout or swelling for many years. I spent my childhood trying to dodge it , by avoiding things that I remembered aggravated the area. Like sunburn, or rubbing, or any prolong pressure in any way to the area were triggers most of the time, and even exposure to extreme cold could flair it up. Just as I thought I had it figured out, it would surprise me with the dreaded tingle and itch of the cycle of hell that would be ahead. Herpes is Hell....as we know, mentally as well as the physical. For about 10 days duration on average. Sometimes less, other times longer. But what was sure to me was that for those 10 days I was alone in the world. A breed apart from others, a monster that had to hide or face the stares and questions of everyone that might see me.

jeanej1 · 01-08-2003, 10:28 PM

Hello again headman, I just read your post "I must be the only one". I am hoping to help other people find some answers thats why I started the group on yahoo and I'll start one on the healthboards tomorrow for children with herpes. Thsnk you again. Very glad that they stopped for you. Jean