My First Post: Beginning the Journey on Antivirals (Famciclovir)

Hey, just wanted to chime in and say that I have the exact same stuff as you for 3 years now, low frequency diplacusis that comes and goes once in month or so, usually with hearing loss episodes (used to be very bad with ear going half deaf and lasted for days about 1-2 years ago, now they only last 30 mins to 2 hours and affect a narrow frequency band).
My hearing loss episodes also have gone anywhere from 500hz to 13k, most often in the 1-3k range. Also both of my ears have been affected from the beginning, though left slightly more often.

I never tried a round of antivirals but rather a natural antiviral called L-lysine. I'm also treating Lyme Disease as all this stuff started after an bad infection with bunch of other neurological symptoms.

Very interested to hear updates on your situation as it closely reflects what I've been going through.

 

Yes, my visits at the doctor were puzzling too, high frequency issues and also bilateral from the start got them confused. By the way, looking at your name, I assume you work with music too? I'm actually a music producer/mixing engineer so been researching this like crazy haha.

And exactly! Loss is not visible in a regular audiogram but noticeable in a sine wave sweep. Has yours always returned to the baseline too?

For me it's been a rough ride. I feel this is a very personal journey and I'm still not 100% sure if I'm doing the right thing. Basically all started for me after getting a bad summer flu with a rash all over my body in army. 1-2 months after that I started developing all sorts of neurological symptoms, aches, muscle twitching, and also the cochlear hydrops while the rashes still present. Read up on it and figured that I might've gotten a chronic infection from a tick during the summer as I served military in an area with lots of ticks. I started on a natural treatment for Lyme and co-infections as I'm terrified of long term antibiotics and been actually seeing some improvement. I still have hydrops episodes quite regularly but they are way less intense and shorter to what I used to have. This spring I was virtually symptom free from everything and started slacking on the treatment. Hydrops came back with all the other neuro symptoms, so I've been slowly building up on the protocol again. But even then, it's still been way better than what I started with.

I've also had some dizziness sometimes, but that's always been when I have no issues with hearing/fullness/tinnitus. So idk if that's hydrops or just part of the countless other neuro symptoms I have.

You have a background story you're willing to share? Honestly first time I've found such a close match for symptoms during these 3 years.

 

About the tools, I recommend getting a hearing test app on your phone if you already don't have one. A pair of studio headphones and screenshotting an audiogram when your hearing is normal and comparing that to a worsening is a good way to check for any bigger fluctuations.

As for prednisone, that stuff can work for tougher episodes. I used to take that in the beginning but honestly in my case it was not the best idea as it weakens the immune system, and doesn't always work very well for hydrops cases.

For me, I started with the help of this forum. JOH and large doses of C-vit. That did help for a few months but still got a bad episode with all frequencies messed up and noticeable hearing loss in lower frequencies.
That's when I started researching more and connecting the dots with my other (also increased) symptoms.

This article particularly was eye opening:
Audiologist: "There's a huge connection" between Lyme disease and profound hearing loss. | HuffPost

Did some blood tests and got a positive for Bartonella and which is a co-infection of Lyme and lyme itself came back as indecisive. Might still be a viral component as well, but I feel mine is mainly caused by an immune response to the bacteria.
The treatment I'm using is combination of natural antimicrobials that herbalist Stephen Buhner has written a lot about. When I started that with full doses, I woke up in middle of the night, drenched with horrible chest and leg pains, palpitations and one of the worst hydrops episodes. Some people call that a "herx" reaction due to bacteria die off. Backed down quite a bit on the doses and started slowly raising which led to a gradual improving.
As I mentioned, I still get the diplacusis episodes, but they're narrow band (like range of few hundred hz), short and no ear fullness, which used to be a very annoying symptom for me.
Also my hearing hasn't taken any permanent damage so far.

Can you recall anything weird happening before the hydrops started for you? Any weird symptoms that feel unrelated, head trauma, allergic reactions etc.? "Cochlear/endolymphatic hydrops" is just a name for symptom combo which has a root cause afterall.

Also interesting to hear that betahistine has so far helped with your diplacusis! I've noticed that benadryl might help too, but hard to say for sure as stuff fluctuates.