Not a sac surgerie but a surgery beetween the sac and the saccule. the duct has been locked... unfortunetly I did not have any improvements. I agree Diamox is a bad stuff.
Lo Anne, En fait, j'avais un paralisia facial, semi facial pour être exact. J'ai également eu un gros stress en 2014, date de l'apparition de ma maladie à méner. J'ai récemment appris que le stress prolongé est inhérent au système immunitaire. C’est la raison pour laquelle je pense que le virus s’est attaqué en 2014. L’anxiété générée par la maladie a ensuite maintenu le cap: stress -> chute de lymphocytes -> attaque virale -> stress -> ..... ...
Well, I dont speak French but i see something about facial paralysis. FWIW Two things come to mind, Bells Palsy, often a virus on the facial nerve and an acoustic neuroma affecting the facial nerve, detectable by mri. Good luck, hope your success continues.
Thank you Juin, I hope to heal one day, in any case I do everything for. In any case I take antivirals and I do the JOH diet.
I'm new here to the forum and I'm 1 week in on antivirals, valacylivor 1g 3x/day. A little about my MM: First symptoms were late October '18, was at a friends wedding with a live band, certain instruments in the band sounded slightly distorted to me, of course I brushed it off and thought nothing was wrong, maybe it was the acoustics of the room, etc. Awoke 2-3 days later with bothersome fullness/pressure in my left ear. Like many others, thought I was suffering from a head cold or allergies, one week later went to an urgent care, prescribed antibiotic which of course was falsely prescribed. After 10 days on antibiotic, was referred to a local ENT. Diagnosed with MM based on low frequency hearing loss on audiogram and fullness. Sought second opinion from neurotologist in NYC, by that point I also had fluctuating tinnitus, mild dizziness and some balance issues, but no vertigo. Diagnosed with cochlear hydrops. Put on diuretic diamox, which I tolerated very poorly by experiencing terrible brain fog and increase in dizziness. Stopped the diamox and switched to dyazide, which I tolerated better than the diamox, but still didn't tolerate. In Feb '19 started to see a NUCCA chiropractor which I have been seeing since. I've noticed mild improvements in pressure, but distortion is all but the same. I did show some minor improvements in my last audiogram as well, although the distortion and fullness are still very prominent. My tinnitus still continues to fluctuate, but has been very manageable as of late, from what I think is a little better adherence to low sodium diet and caffeine restriction. The distortion and fullness for me are the most troublesome symptoms. My ear is always very full and everything sounds to me like its coming in through a broken speaker. Both symptoms cause me some extreme fatigue at times and those two symptoms do not really fluctuate for me, they're constant. I'm hoping to gain as much relief through AVs as possible. I had to really push my current ENT to prescribe the AVs, he really didn't want to hear much about it, despite knowing about all the studies from Gacek and Japan. He didn't prescribe on my first call to him, but I persisted and won out, thanks to the advice from many people on here. They work for us, not the other way around! It's easy to lose sight of that sometimes when you're going through this, but its important not to. Thanks to everyone who posts on here, this is such a valuable resource. So far, I haven't noticed much difference in my symptoms just yet from AVs, but its only been a week. I will post some updates on my symptoms as I continue. I also have allergy testing scheduled a week from tomorrow, as I've always suspected that allergies may play a role in my case.
I have cochlear hydrops, starting in 2007. After 9 months of horrible distortion and other symptoms, distortion being the worst, imtried acyclovir. Within a minth or so I experi nced what I judged to be about. 60% improvement primarily in distortion and tinnitus which were the most upsetting symptoms. I followed that with allergy treatment and more antivirals and over a period of two or three years got almost total remission of symptoms including restoration of hearing except in the highest ranges. Eliminating caffeine helped a little too. Good luck, be patient and look at the general trend.mthere will be setbacks along the way.
Bonjour Juin, quelle était votre dose d'antiviraux à l'époque? et prenez-vous encore? Avez-vous essayé le régime joh? Cordialement,
Haha, I will try my French. I started by taking 400 mg acyclovir 5 times a fay for about a month or 6 weeks. With this I got significant improvement in distortion and tinnitus. The quality of my life improved a lot. After that I went to DrDerebery at House Ear in LA. I started taking famvir for about three months. The dosage i forget, whatever her patients say. It was almost ten years ago. From that time on, imonly took antivirals hen i had a relapse and then i would take them for about six weeks. I have not taken them at all for at least five years. I never tried JOH. I was planning to right before I first took the antivirals but they worked for me so I never tried JOH. I also took allergy testing and shots. I took the allergy shots for 7 or 8 years. I credit the allergy shots with the return of my hearing and I credit the antivirals for eliminating the distortion and tinnitus. Together they returned my situation to near normal. Traditional low salt, diuretics etc only had made me worse.
June, I’ve seen you mention allergies on several posts. We’re these food allergies? And you received allergy shots one time, as treatment?
I was tested for allergies by dr derebery at house ear clinic in los angeles. I took allergy shots first weekly for several years, then i think biweekly, then monthly for about 8 years. It is tedious to make time to get them but you may be able to give them to yourself after a while. I think they helped a lot but it is a very gradual thing.
Hi June, I was diagnosed with CH just under 6 months ago and I was wondering how much Acyclovir originally? Do you still take it? My doctor only prescribed 400 mg 1x a day and from what I understand that won't cross the blood brain barrier. This doctor is a neurotologist too. So frustrating. Now I have to call them back. It's this constant fight, wearing me down. What type of doctor prescribed Acyclovir? Would be nice to find a doctor who has a clue. Do you have any side effects from the Acyclovir? I seem to have bad side effects from.every medication I've tried this far... Even Betahistine. Thanks June! I appreciate your help.
Great! I am about same as yours, half hearing loss (no bass) on right ear first, then the left year lost hearing later. Tinnitus is forever follows me, now additional T noise on top of mosquito noise sounds like car engine or motor noise. I have genital herpes and now think of my T happens about the same time of having herpes.
Ok, today I lied my doctor. I said a ENT friend said me about Valtrex for my ear. My doctor didnt want prescribe me AV, she said that its a strong drug with possible side effects, someone had a bad side effect? Also she said only take 7 days for herpes. I told "my friend" said 2 months if its working and after a maintenance daily dosage. She said that was a strange because the normal for herpes is only 7 days. Anyway I have Valtrex to start, I wish this works.
