Cochlear Hydrops. Help!

For what it’s worth, in regards to AVs, I’ve had no side effects. I’ve been on them for about 6 months now. First valacyclivor, then switched to and remain on famciclovir. Just realize every patient is different when it comes to medication and side effects. I was on 2 different kinds of diuretics early on and I could not tolerate either. And for the most part, those are well tolerated.

 

I would say go for the AVs. As others have stated, I think the dosage prescribed to you is pretty low--3,000mg/day seems to me the sweet spot. I have been on AVs for almost a year and have had no interactive side effects with my anti-depressant. Given the choice, I would choose AVs 10 times out of 10 if it meant my Meniere's symptoms were suppressed--even if it meant having the undesirable side effects you mentioned. But that's just me...I don't walk in your shoes. Best of luck!
--Kevin

 

Megan. You might want to print out Dr. Gacek's research on AVs and show it to the doctor who prescribed you the AVs It lists dosages. There is a link to it on the forum here.

 

A Perspective on Recurrent Vertigo, by Richard R. Gacek

 

I got AV from an ENT. However, I have been to ENTs who would not prescribe them. So you have to do your homework beforehand depending on where you are located. Most doctors can prescribe them. Not all believe that they work and therefore won’t prescribe.

 

I'm curious as to what tests you've had. It just seems odd to me that you would develop symptoms in both ears in such a short time frame.

 

Wendy, what brand lemon bioflavinoids do you use, please? I read about this somewhere here, and if I remember, it was stated that it had to be lemon bioflavinoids and not citrus bioflavinoids. Not sure why. Where do you purchase? Thank you.

 

JOH recommends Lindberg brand, you can get them online from Nutritionexpress.com.

 

Hi Megan
I can’t say for sure what my trigger is/are for sure just yet. I’m still searching for that actually. What I can say is that I’ve always thought stress had a lot to do with it. My symptoms started in October of 2018. Almost one year prior to that in November of 2017, my business was served with a sales tax audit due to some negligence by my accountant. It was a stressful time. As all that was going on my wife and I gave birth to our 2nd child in November ‘17 as well. This was in addition to us already raising our first child who has a severe disability. He takes up a lot of our time and energy. Then right before my symptoms started in October ‘18, i moved from an urban area to a very rural, heavily wooded area in September. A month later I had symptoms.

I’m far from a medical professional, but my opinion is that all that stress over that year period gave me a weakened immune system. Then upon change in environment, could allergy have triggered my symptoms? Seems like a plausible enough theory for me, so I’ve decided to give immunotherapy a try. I’ve been on the shots weekly for about four months now. No significant changes to report just yet, but I know it will take many more months and possibly years to have an impact. I stay ons consistent low sodium diet, although when I have eaten salty meals I have not noticed any difference in my symptoms. What I have learned recently is that I can confidently say caffeine is a minor trigger for me. When I stay away from it completely, my symptoms are marginally better, but not much. But even if I drink decaf coffee I do notice a small difference in my symptoms.

Currently my fullness is still there, but it is lower now than it was a month ago. I had a huge uptick in fullness and tinnitus about 3-4 weeks ago. I’m not sure if it has anything to do with the beginning of the fall allergy season, but it certainly seems like it could. Especially since a year ago in the fall is when all this began for me. The fullness has subsided some but the tinnitus remained, although it’s more mild than a month ago. My hearing Seems to get worse when I have a flare up in symptoms.

 

Lemon bioflavinoids 700 MG from Lindberg.

 

I have no balance issues, like rocking or dizziness or vertigo. I had some dizziness at one point, but I 100% attribute it to the diuretic I was on, since after I stopped that medication it went away and never came back.
As far as popping my ears, I tired everything in the early going, but that wouldn’t help me as the problem is in my inner ear. My fullness is always constant too, although it is definitely less than it was a year ago, so I continue to try and look at the overall trend.
As far as allergists, I originally saw a local one near me and he said the same to me, nothing conclusive on MM/CH and allergy. He seemed like a pretty competent physician, but I was pretty sure he wasn’t all too familiar with anything written on allergy and Menieres, particularly anything written by Derebery. It’s at that point where I decided to go see Dr. Derebery myself.
Try to stay patient with the doctor process. There’s some good ones out there, this is a great resource to find them depending on what part of the world you reside in

 

I think that you are right in thinking that a true diagnosis is still in progress. Because of that, it is difficult to come up with solid treatment plans, other than just managing the symptoms. The "vestibular test" you had was just a small part of a complete Vestibular Testing protocol. It would include a complete VNG ( videonystagmography), Caloric Test ( what you had with hot and cold air), Rotary Chair and Posturography. ENT's do not have the facilities or experience to do this extensive evaluation... you'd have to be referred to an Otologist or NeuroOtologist that specialized in Vestibular Disorders. All that being said... Menieres / Hydrops are very often diagnosed ( and misdiagnosed) solely on the basis of symptoms reported. When it is early in the symptom phase ( i.e. it hasn't been many many months or over a year) , it's true that treatment tends to be conservative, because the real diagnosis is still fuzzy. It is good you had a negative caloric test. It's also good that you have not experienced true Vertigo ( rotational ) or Drop Attacks.

Keep after the diagnosis track. Unfortunately it does take more time than we would all like. I would bet that it is either a viral condition, or something that will turn out to be something other than Meniere's. Do everything in your power to manage your stress/anxiety levels. They have a strong effect on all Vestibular disorders. Wishing you well !!