Antivirals

Hi everyone!
My apologies in advance for the long post. I’m seeking feedback about possibly starting antivirals on my own given my current situation.

To start, I have not been diagnosed with Meniere’s nor have I suffered any dizziness or vertigo (so I hope it’s ok to post here) but in late February of this year I suddenly lost a moderate amount of hearing in the low frequencies of my right ear. I didn’t get the proper treatment from my GP and the ENT I saw while on the road for work. During this time I began getting aural fullness, sensitivity to sound and some loud leaf blower type tinnitus. When I returned home, now about six weeks after the initial hearing loss, I saw a new ENT. He diagnosed me with SSHL and also did a ct sinus scan which revealed a crooked, lots of inflammation and bacterial sinus infection. He put me on oral Prednisone, gave me an intratympanic injection and compound nasal spray for my sinus infection. A week later my hearing recovered 90%. After two more injections my hearing was stable but was I having was having fullness on occasion and oddly had some high frequency loss in BOTH ears (the nasal spray had gentamicin in it which I read is highly ototoxic but they assured me it wasn’t in that amount).

A few weeks later I starting doing some pretty intense breathing exercises which end with holding your breath and basically pushing it into your head. Bad idea. My bad ear filled up and my good did a little as well. I saw my ENT the next day. My hearing dropped off in my bad ear to a little worse then it was at the start and I went back on oral prednisone and got two more injections over a week (this was now six in total). My hearing bounced back and the fullness went away. Then few weeks later after a stressful day and mostly sleepless night, I woke up with major fullness in BOTH my ears. I couldn’t hear low frequencies at all and felt like my head was trapped in a bubble of sorts. It cleared up for the most part before bed and I saw the ENT the next day and there were no hearing changes in either ear. The ENT had no solid explanation for the fullness that occurred in my good ear other than saying it could’ve been just a random fluctuation or allergies. At this point, we basically decided to discontinue treatment for the time being and he laid out a plan for management which included I do an allergy screening. In our final discussion he said he believed that all of this was caused by bacteria from my sinuses getting into my ear and also ETD.

I’ve done a lot of reading through this process and haven’t found much to corroborate his diagnosis. After reading a lot of posts on here and elsewhere I messaged the PA and asked if it could’ve been caused by a virus. She answered specifically about herpes only saying it wasn’t herpes because I never showed any of the symptoms. I’m not so comfortable with her answer, especially reading how often SSHL (and hydrops, assuming I have that as well) is caused by a virus.

I’ve read posts where people started out with symptoms such as mine only to have things get worse over time so I am considering going on antivirals to be on the safe side and be proactive.

I am currently taking NAC, magnesium, b6, d3+k2. I also started taking L-Lysine but the first day I took it my ear filled up not long after so I didn’t take it again. Is this common and/or is it a sign it is working?

Things seem steady at the moment. I haven’t had fullness in over a week and my tinnitus is barely noticeable but I’m not comfortable this will hold.

I’m not asking for direct medical advice but I’d greatly appreciate any feedback on my situation and some ideas on how to proceed and possibly starting antivirals as I’m a little fearful doing so on my own. Thanks!

 

The treatment with gentamicin ended about 6 weeks ago so I won’t be taking anymore. The breathing exercises are part of the “Wim Hof Method”. His “methods” have quite a large following so I imagine with so many that do them, they’re typically well tolerated. I did them for three days and felt great after the first two but it was the last day when things went haywire. I think it goes without saying I’ve not done them since lol duh

I’m glad to hear you tolerate the antivirals well, and while that’s an issue to contemplate, I’m more hoping for on feedback on whether my situation would possibly warrant taking them at all given my symptoms (but no vertigo) and the diagnosis/explanation from my ENT.

 

-Thanks for the feedback Donamo

I do realize no one can say with certainty what will work or not. Somehow I might not have been clear on that even in my long original post.

I just feel like I’m in a sort of limbo. There’s what the ENT told me vs. so much else I’ve read.

About antivirals themselves, if it was a virus that caused my issues, and not knowing what type it was, would valacyclovir or acyclovir be what to take either way? And what dose is typically taken and are they taken indefinitely or for a just period of time to suppress or kill the virus?

 

Hey everyone. It’s been quite a while since my last post and so much has happened, including a noise (I think) setback which caused dropping hearing levels and distortion, multiple more dexamethasone injections, more prednisone (from which I unfortunately acquired bilateral/head tinnitus which has been very difficult to for me to deal with and finally a tube placement in my affected ear. I’d tell my whole story but it would be so long that I’ll basically just get right to question after a few relevant details. (Though if anyone has any questions, especially about the time placement which I felt was successful in correcting the distortion and relieving some fullness, I’ll definitely go into that.)

Moving on, my ENT wouldn’t prescribe me antivirals so I went doctor shopping and got lucky with the first one. I printed out some studies as a few on here suggested and brought them in and he was all for trying. I asked for Valacyclovir 1000mg TID but he searched on some FDA site and he said the maximum dose recommended was only 1000mg once daily so he wasn’t comfortable prescribing it but would do Acyclovir 800 TID or Famciclovir 500 TID. I chose the Acyclovir.

It was about six months after the aforementioned tube placement when I found my doctor and started on the Acyclovir. I took it for about 2.5 months but didn’t notice much improvement so I asked my doctor to try the Famciclovir. Then, wouldn’t you know it, a few days before I was to travel for work for a month I felt like I had a breakthrough. My ear seemed to “open up” fairly significantly, but of course I didn’t feel it was “cured” (and I realize it mostly likely never will be). I left for work the with about 2 weeks left of the Acyclovir and brought the Famciclovir with me. Things were going ok and I was relatively comfortable with where things were when I ran out of the Acyclovir. So at that point, I figured let’s see how the Famciclovir might work. I waited 24hrs to let the Acyclovir get out of my system the I took the Famciclovir. Within in three hours after taking it my ear got very full again. I stuck with it for two more days with increased fullness so felt I should go back to the Acyclovir. I messaged my doctor and he put in a new prescription for it and I started back on it and fullness went back down. Things were again “ok” for a few more months but it had now been almost five months since taking the Acyclovir 3 times daily so I decided to drop my dose. Then, around that time I was switching from Clonazepam to Valium to begin a taper and things got a little funky at first so I stopped taking the Acyclovir altogether. That said, my ear has still felt pretty good for some even though unaware to me, the tube finally fell out and since the hole was completely healed my ENT said it had been out at least 4-6 weeks.

All that said, the past few week or so my ear has felt a little fullness and I’ve decided to go back on an antiviral. I have a full three month supply of both Acyclovir and Famciclovir on hand. I’d like to give the Famciclovir a chance this time but I’m concerned about fullness I felt the few days I was on it.

From anyone’s experience and knowledge, is this possibly a good sign in that, assuming there is a viral component to all of this, it’s aggressively attacking/suppressing the virus as I’ve read JOH and other people say and that it’s just a matter of sticking through it until it possibly improves? Or is it possible that if I take it again and start getting fullness it could be causing unnecessary damage?

I realize every situation is unique and that there’s no definitive answers but I would really appreciate any feedback anyone with more knowledge than myself. Either way, it’s a decision I have to make myself, but again, any insight would be greatly appreciated. Thanks!