For those with cochlear hydrops

Hi Gooch,

I am new to Cochlear Hydrops, too, having been diagnosed with bilateral Meniere's (Cochlear Hydrops as I do not have vertigo) in mid-June.

For me there are no episodes. It is just one constant state of affairs-now three months.

My low frequencies are stable but remain down considerably while the mids-highs are okay, thankfully. My hyperacusis early on has settled down and is much less.

Aural fullness and tinnitus are constant, though, in the right ear. My voice also sounds different and has for several weeks.

I am on betahistine, dyazide, and several supplements from the JOH regimen. I am hopeful that these will work soon to offer some relief. I also am on a low sodium diet and have cut caffeine, chocolate and most alcohol from my diet.

I have not yet tried anti-virals and even Dr. Derebery from the House Ear Clinic has advised me to wait another month to give the current meds ample opportunity to work before trying Famvir.

I am interested if others have episodes of cochlear hydrops or 24/7/constant symptoms like me.

Thanks!

 

When my hearing was bad, i had distortion all day every day. The only thing that seemed to help it was elevations (as in the mountains) and avoiding caffeine. When i started taking acyclovir, the distortion began to cut in and out (for the first time in 8 months). Best i can remember this was an intermittant thing gradually getting better over weeks and months. Allergy treatment also helped so i suspect allergies also caused problems. Have you by any chance been exposed to any more allergens lately?

 

I have hydrops as well and have been treating it since 2013. Anyone who has hydrops needs to treat it aggressively just like Meniere's. Here's the reason why. Hydrops is Meniere's minus the vertigo and many doctors, who know will even call it early Meniere's. Untreated, hydrops can and will likely advance and become Meniere's. According to articles posted on this forum, 90% of these cases are viral, and 10% are autoimmune. Low sodium diets don't generally help treat viruses. Most important is to get on the antivirals. Most of us take Valacyclovir. My maintenance dose has been 1 gram twice daily. If I start to cut it back, the pressure will start building back up in 2 days or less. If you let the pressure build up too much the Reisners Membrane will rupture in your inner ear and then bad things will happen. At that point damage will be happening to your sensory. This is when hearing is damaged, tinitus gets worse, and dizziness or vertigo will be likely early on. Later into Meniere's, after severe sensory damage, pressure will not be necessary to have dizziness or vertigo. This is why You absolutely want to protect you inner ear as early as possible. According to the Dr. Gacek article, available on this forum, you will need to start on 3 grams of antiviral a day and scale it down after you get relief after a week or two. Then you will have to experiment with your dosages as you scale it back because your maintenance dose may be different than others. Diet, caffeine, and alcohol do not have much effects on the Zoster Virus, which is what's suspected to be the cause of our problems. Big thing once again is to protect your ears from viral damage as soon as possible.

 

When I first started having issues with my ear (before I was diagnosed or even heard of Meniere's), I would have two or three episodes a year of tinnitus, fullness, distortion, etc. that would last anywhere from a few weeks to a couple of months. I just chalked it up as bouts of tinnitus which is what the useless ENT I went to said I had. I then went into remission for over five years.

When my symptoms returned about three and a half years ago, I just felt it was something other than tinnitus. I went to a different ENT and he sent me for several tests when he finally realized I was complaining about something other than just a ringing in my ear. At this point I did some research on my own and saw that I had all the symptoms of Meniere's minus the vertigo. I never mentioned Meniere's to him but when all the test results came back he asked me if I heard of it because he suspected I might have it.

It was around this time that I had my first vertigo attack. He put me on the low salt diet and prescribed diuretics which helped a bit but when my symptoms got worse and the vertigo became more frequent, he referred me to a neurotologist since he felt there was only so much he could do for me.

Sorry to digress but in answer to your question, your symptoms and the duration are going to vary. Currently I have good days and bad days although for the past month or so they have been better than usual. I get the occasional dizzy spell but haven't had full blown vertigo since March. I'm still on diuretics and while not on a strict low sodium diet, I do watch my salt intake and try not to go overboard. I'm also on a modified JOH regimen and take one scoop of Lauricidin (monolaurin) a day.

 

You should consider seeing a TMJD specialist to do a 360 degree x Ray to rule out jaw issues. Or get a neck evaluation to rule out upper cervical neck issues

 

It took a few weeks of regular visits. Definitely two steps forward, one step back. I was encouraged by just being able to avoid any dizzy symptoms. Strange they adjusted you on your first visit. They usually want to take and analyze your x rays first. My chiro adjusted my facial plates using something called "nasal specific" it seemed to expedite the impact of the adjustment. Also a good idea to be kind to your jaw. Try soft foods or cutting up your food real well. Sleeping posture is key to holding the adjustment. Sleep on your back in a good neutral position.

 

I've been dealing with CH for about a year now. Somewhat comforting to see others describing very similar symptoms, I've been in the "a few bad days" followed by a "a good week or so" for a while now, but have had pretty solid low level roaring with some fullness for about 2 weeks now so am kind of losing hope that another good cycle is coming.

I have been really struggling trying to find any kind of pattern as to what may be triggering bad cycles, etc. and not had any luck, allergies isn't something I've really considered so I may look into that.