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Devastated! Disseminated hsv 1 from genital location to causing endolymphatic hydrops

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Hello guys,

Sorry for the long post but here's my story:

I contracted ghsv1 after a single encounter of reciprocal genital stimulation then handling my own private part with my hand and without any direct skin to skin contact (talk about unlikely transmission?). I know this because I only had this sexual encounter in the time that I developed my skin lesion and the lady was behaving extra cautious talking about the need to be tested first prior to engaging in a frank sexual act (something no one ever had mentioned and I have dated medical professionals). Sure enough 2 days later I had one vesicle that stayed in place on the shaft for 8 months being completely asymptomatic until the first outbreak erupted (also atypical and planned parenthood disregarded the possibility of herpes completely) . 6 months later I got a positive IgG of 8.5 to hsv1. Horrible back to back outbreaks for 3 months. 4 months after my first OB I had two beers and went to sleep. Woke up next morning with vertigo for the first time in my life. Resolved in 5 days. I thought it was just benign paroxysmal positional vertigo. 2 months later, same thing, two beers before I sleep and boom vertigo the next morning but this time it didn't resolve for more than 2 weeks. Saw neurology. Had peripheral nystagmus on exam. Done MRI that was normal. Decided that it could be vestibular neuritis and for 8 months after that I didn't have a drop of alcohol. Nevertheless, I continued to have intermittent genital symptoms but more remarkably diffuse irritation of my spinal cord. I could literally feel the virus crawling up. Invading area by area. Until I started to have atypical single vesicles over the back of my scalp and neck. My PCP refused to prescribe me Valacyclovir saying that it's not indicated and refused to believe that I have disseminated herpes simplex infection. I reached out to a friend and managed to get Valacyclovir prescription of 1000 mg daily because I was worried sick. I forgot to mention that I was self medicating with L-Lysine 1000 units twice daily if not 3 times as well as multi vitamins and hoping that my immune system would react appropriately but unfortunately that didn't seem to be the case. Despite being on Valacyclovir I started to develop burning headaches and bilateral eye pain and irritation. I started to have floaters and light flares of cars at night (I still do). Went multiple times to ophthalmology who reassured me that my vision was excellent but couldn't find an explanation for my symptoms. Especially that my symptoms were bilateral they deemed viral etiology to be unlikely. I disagreed all along. Currently on lubricating eye drops for dehydration and they seem to help control my eye irritation but not the floaters nor the flares. Then, 3 months ago return the ear symptoms. I usually had this deep neurotic burning pain in my right ear but now I felt it crawling up my scalp and migrate to my left ear with the exact same symptoms involving the right side of my face as well. ENT and neurology didn't think that it was viral because it's bilateral. Finally, last month, on a beautiful afternoon, I was feeling exceptionally good. We were on the lake barbecuing and I did the mistake of having one bottle of beer. Nothing happened that day. Next morning I woke up without vertigo but my head was a bit heavy. I was happy with the results initially. The next day, I started to have ear fullness and tinnitus as well as dizziness. Went to ENT who diagnosed me with endolymphatic hydrops. That term basically means Meniere's disease but as my symptoms were atypical it would be called secondary endolymphatic hydrops due to hsv1. This is yet to be acknowledged by ENT as I have another appointment next week because my condition is now bilateral! Just perfect. Now I can't have a diet with excess of sodium of 700 mg at time or else my symptoms get worse. No coffee, tea, alcohol, chocolate or smoking. The tricky part is that lots of food low in sodium are rich in arginine and vice versa! Just fantastic! I'm still in a denial, dizzy and listening to my nighttime tinnitus as I'm typing this long post. I have a medical background and I have educated myself very well on the subject. I don't have questions but I do feel shocked, sad and depressed. Herpes is incurable but it caused me another incurable medical problem. I just hope that I will have the power to continue living my life and achieve my goals with the steep uncertainty that I have right now. Hope all is well with you.

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Actually, I do have a question... How am I supposed to accept to risk the life of someone by possibly transmitting such a vicious virus? I know even if that person agrees to take the risk she wouldn't know what she's getting herself into... My quality of living has significantly decreased and I'm only 34...

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  • 2 weeks later...

I feel your pain (literally). I have had both strains for a total of 20 years now. After the horrific first outbreak, I rarely ever had outbreaks and if I did, it was a single bump that looked like a zit.


I was exposed to mold for several years and then after a particularly bad basement flood at my job, I started to have back to back outbreaks (still mild in severity), but still annoying nonetheless. It has now been a few years since that flood and I have never been in worse health than I am in now. The nerve pain is debilitating; it has robbed me of my short term memory, my cognitive and Comprehensive abilities have been severely diminished; I’m exhausted all the time and every time I orgasm it makes all my symptoms worse. It is absolute, pure hell. A lesion is now the least of my worries/problems. I am on a rapid decline that I am afraid will lead to cancer, Alzheimer’s or both. I have been to tons of different specialists and have gotten many second opinions and no one can find any other causes for all of my physical symptoms and cognitive decline. I am only 39 and yet, I feel like an old, tired, (and sometimes, bitter) woman.


I feel the same way as you in regards to my mate. He is 50, neither of us have been married and we don’t have kids. He knows I have herpes and has chosen to continue to date me. (We’ve been exclusively dating almost 3 years). We are both somewhat religious and haven’t had sex yet (with each other, I mean). It doesn’t bother me because we have other forms of intimacy. We are getting closer and closer to an engagement, but if he knew the true extent of what this disease has done to me, he would freak the f**k out and I couldn’t blame him. When I initially revealed my status to him three years ago, I didn’t connect all of my nerve pain and cognitive decline, etc. to this disease. I know more now than I did then and I’m conflicted as to how to continue our relationship. So, I can relate to where you are coming from and I empathize with you.

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