Tinnitus Caused Possibly by HSV

Hello,

My name is Sue I’m 57 and thanks for letting me join this forum.

A little about my tinnitus. It started in November 2017 after the death of my mother in law and after a very stressful period with family members. The noise was severe and only in one ear at first. I didn’t know what to do I felt like my head was going to explode and sleeping without white noise was impossible. Literally I was besides myself and became anxious and depressed.

As well as tinnitus I had lesions in my mouth. When I visited my GP he thought it was oral shingles and prescribed Aciclovir. I felt terrible in myself and at the lowest I was shaking uncontrollably and had no energy even to make the simplest of meals. Without my husband I don’t know what I’d have done at this time. I went to see an ENT consultant who said that my hearing was fine and he said that the tinnitus May have been stressed induced. The next day the tinnitus went to my second ear and the noise was incredible. This was the worse thing that I have ever experienced in my life...

I cancelled two holidays because of the mystery illness. I had two more bouts of lesions in my mouth from January until May and two more courses of acyclovir. I must say that I started to have periods of relief from the tinnitus when the noise was no more than squeaks but also flare ups when it made me feel that I couldn’t function in society.

I stopped drinking any alcohol and drank only de-caf coffee. I saw 14 different GP s and most of then said I’m not sure if it’s shingles as this is unusual. I went to see the ENT consultant again who was sympathetic but not really concerned as my ears and hearing were fine.

So I read as much online as I could. Thank God for the internet. In June this year I had another crop of lesions in my mouth and went to the GP again. I saw a locum who suggested swabbing the lesions. It turned out to be HSV1. I read that it could be Recurrent intraoral herpes and I contacted a professor who has researched in this area. He kindly sent me a prescription for Valtrex and has agreed to see me on NHS. He also suggested lysine which I have now started however I have had two reoccurrences of quite severe tinnitus this week (before starting meds’). I fear these attacks as I don’t know how long they will last but it’s usually about 12 hours. This is the only thing that keeps me sane knowing that the ringing will eventually lessen.

Any helpful comments or advice will be gratefully received. Thanks, Sue.

 

It is quite possible that HSV may have caused lesions/damages to your auditory nerve, which would be the root cause for your tinnitus, or may have caused lesions to your auditory cortex (the later being unlikely, though still a slight possibility, as HSV travels from the nerves to the brain, where it uses neurons' ganglion as "reservoirs" (where it stays at a latent state), this is the mechanism that ensures the body can never kill off the entire HSV population (and thus makes this a chronic disease), HSV-1 appears to be particularly damaging to the nervous system, thus the likelyhood of your auditory nerve sustaining damages and being the cause of your tinnitus is rather high.

It is hard to tell whether or not your tinnitus will fade as that depends on the extent of the damages done to the nerve, if the damage has been done to the nerve endings or the inner part of the nerve, it is irreversible, if however the damage is done to the myelin sheath, this usually repairs and rebuilds over time (albeit very slowly, it can take months, sometimes years before the sheath is entirely repaired), assuming you get proper nutrition (vitamins B12, D3 and usually food rich in cholesterol (the myelin sheath being composed of fat tissues), are essential to a faster and steady recovery).

While there is no "cure" per se for HSV-1 antiviral management therapies do exist and aim at preventing the spread of the pathogen and further damages it could do to the body, this however will not restore the damage already done to your nervous system and only time will allow to restore those parts, assuming the damage isn't too extensive and hasn't become irreversible in some fashion, it is also of note that after several years, some HSV carriers become asymptomatic, so as time goes by you may experience fewer outbreaks, in fact most patients do as they build up a form of immunity to the virus over time, although even asymptomatic carriers can still transmit HSV, so be mindful of your partner, this is fact one of the reason for such a prevalence of HSV-1, the majority of carriers being asymptomatic, hence why 58% of the US population is considered infected with HSV-1, most of whom are asymptomatic. (that is, they have positive serology to HSV-1)

 

Thank you so much Mat for your reply which makes a lot of sense.

I was advised to take B12 and Vit C plus zinc by a lady in a health shop. I started taking B12 in liquid form and lozenges for vita and zinc but wasn’t sure how long I could take this for so I stopped this two weeks ago. I will restart and also get D3.

I feel better now knowing what the cause of this tinnitus is after having the swab results as previously the GPS could not give me any answers. Your reply has certainly been far more informative than any doctor that I’ve seen (including the consultant). I am hoping that it will ease as I have actually had almost three weeks with very mild to no ear ringing. It had to be this week that it flared up again as I am going on holidays.

I can honestly say that tinnitus is the worst thing in the world. It destroys quality of live and certainly effects anxiety and depression. I was previously a positive and bubbly person but this eight months has changed my whole personality. I don’t want to do much or go far “just in case”. When I get an attack and it is subsiding it almost feels like my ears are changing channels... sometimes I get a tickling feeling on the eardrum too.

This site has been very beneficial to me already.......so glad that I found it x

 

I am glad you've found my advise useful

On a sidenote, there is also the possibility of your auditory nerve being inflamed (again, because of HSV) rather than damaged (although chronic inflammation can eventually lead to persistent damage), if so, it is likely for your tinnitus to slowly fade away if the inflammation decreases as you start ongoing an anti viral treatment (such as aciclovir or valaciclovir), cortico-steroids would also bring (almost) immediate relief in that case, but are counter indicated for treating infections, therefore as appealing as it would seem, I would advise you not to take any.

Either way, assuming you've only started treatment recently that would mean your auditory nerve has been stimulated/inflamed for the last couple of years or so and has had no chance to recover within this period, you need to let it rest and avoid exposure to loud noises (realistically, protect your ears to anything above 70 dB) and the use of headphones, likely for the months to come, even if your tinnitus eventually fades to inaudible levels or you'd risk a relapse, the same advice would hold true for anyone suffering from sudden acute noise trauma.

 

The onset of my tinnitus and visual snow occurred within a few months of getting my first (HSV) cold sores at the age of 19 or so. I've always wondered if there's a connection there, but, very hard to say, I also had stresses and car accidents in that time frame.

 

I've been researching my own journey, and came across this thread. I wish I had this understanding a long time ago (~5 years) when my first drop of hearing and tinnitus occurred.

My last episode was about a week ago and I am attempting the regiment highlighted below (steroid + antiviral).

As an aside, I was on a kick of 500mg/day Valtrex prior to the first drop (to attempt a long shot eradication of EBV). I do not recall exactly when I stopped and when the tinnitus started, but there is some thoughts in other research that Herpes family viruses can adapt to the antiviral (since it only impacts one of their two main ways of replication). I may have triggered that adaptation.

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There's a lot of PubMed and other reputable articles on HSV-1 / HSV-2 activating hearing loss (which then can easily induce tinnitus)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4222184/
Section: HSV Types 1 and 2

Excerpt on recommendations
"Treatment of hearing loss associated with HSV1 or HSV2 infections includes treatment with antiherpetic agents and steroids. In the setting of encephalitis and hearing loss, standard therapy for HSV1 encephalitis (10–15 mg/kg acyclovir TID) should be performed; in the setting of meningitis and hearing loss, therapy for HSV1 meningitis may be adequate (5–10 mg/kg acyclovir TID or valacyclovir 1,000 mg TID; Studahl et al., 2013). Hearing loss that does not recover following treatment with steroids and antiherpetic agents can be remediated with hearing aids or cochlear implantation, depending on the severity of loss."

 

Thank you! I am new here - def fall under this thread - This forum is life saving