Hello I am 34 and was recently diagnosed with a sudden hearing loss in my low frequencies in my left ear. The audiogram shows that I am at -50db in the 125, 250 and 500 frequencies before my hearing returns to normal at 1k. They do not know whether it is Meniere or not. I did not have any vertigo. I had an episode of dizziness and aural fullness seven years ago and one ENT had told me it was Meniere, but some other ENTs I consulted lately told me it is too early to say. I am having a hard time to adjust to and accept my situation. I was misdiagnosed by my doctor whom I went to 2 days after I got a sudden sensation of ear plugged. That was in February. He sent me home with a nasal spray and several weeks went by before I went to see an ENT...I had noted smth was wrong with my ear but did not realize it was a hearing loss. I thought this would go by by itself! I did not even notice I had a tinnitus until the ENT told me about the psychological aspects of the tinnitus and only then did I start to notice it (like a low sound "hum") More than the hearing loss, what I struggle with is this constant feeling of my left ear being plugged and the sounds echoing / reverberating in my ear... I went to see an audiologist to see if I was a candidate for a hearing aid to help reduce these annoying "side" effects of my partial deafness. The audiologist made a hearing test which showed that my hearing was -40db at 125, -35db at 250 and -20db at 500. I thought this was an improvement but my ENT said that this means nothing as audiograms are a highly subjective test...For him, the situation remained pretty much the same. Anyway, the audiologist told me that he could not do anything for me as a hearing aid would be more detrimental than helpful. I felt really discouraged as I am left with no other option but putting up with my condition and these side effects. So I would be very grateful to know from anyone who has experienced sudden deafness in their lower frequencies if 1) the feeling of "plugged ear" goes away with time and 2) if the "echoing" or "reverberating" sounds go away also and what is the best way/method to cope which has proven helpful to you. Thank you in advance for your responses, vaita
My situation is almost identical to yours. I had my first episode when I was 33 which was 6 years ago. Since then I‘ve had two more flare ups. All three times the symptoms subsided within a few days. I took steroids, which were prescribed by my ENT, each time that this happened. That seems to help me. Every time it happens I am scared that my hearing will not return. So far, that has not been the case. I think you will feel better in a few days. But you could always check with a different ENT if you are not satisfied with the information your first one provided you with.
Your symptoms seem very much like mine. My diagnosis is cochlear hydrops which is a varient of menieres and sometimes progresses to classic menieres with vertigo. What helped me a great deal, almost to the point of 'cure' was antivirals (acyclovir and later famvir) and allergy shots. I had had ch for 9 months and had no success with traditional treatments. Even prednizone which is a first line treatment for sudden hearing loss had not helped me. My family dr prescribed acyclovir when the oto had told me there was nothing else he could do for me. The acyclovir took away most of my distortion but not all the fullness and other off feelings. My audiogram began to show improvement at this time. Then I had some backsliding at the beginning of summer when pollen and mold counts are high here. I went to Dr Derebery at House Ear Clinic in LA and she did allrgy testing and presribed famvir for several months. Within a couple years or less my hearing was in the normal range in all frequencies except 8000. Loss at the very high end is harder to restore. That was 7 years ago and my hearing remains in the normal range. I have small setbacks about once a year but nothing like the original hearing loss and disortion. Good luck. There is a lot of reason to be hopeful but it will take some treatment in my experience.
^^ I omitted, as a result of the allergy testing, I have taken allergy shots for the last 6 years and imo this has been the other key besides antivirals.
Like June, I have a diagnosis of cochlear hydrops - very similar symptoms to you. I went several months before I went on antivirals (valcyclovir), but when I did I recovered my hearing completely and all other symptoms subsided. The only thing I was left with was an occasional feeling of pressure in my affected ear. I am actually in a bit of a setback right now - I have very faint tinnitus and at times my face around my ear feels a little numb and I have a little bit of the "full" feeling. This is nothing like it was before and seems to be clearing up. I am still on valcylcovir as well as the JOH regimen.
I am yet another one that is diagnosed with cochlear hydrops. My main problems are ear fullness, low tone hearing loss (when full) and roaring/ringing. My symptoms started last February (2013). The symptoms fluctuated off and on all summer. I would have bad fullness and roaring for 1-2 weeks at a time and then feel better for a few days to have it all start over again. In between the attacks of fullness my hearing always improved. In September I started Lemon Bioflavonoids during a rather long attack and the symptoms went away within 2 days and I felt almost normal from then on until this past April. My symptoms are back and I am in the middle of a 5 week (so far) attack. I am really starting to think mine is largely effected by seasonal allergies based on the timing. I am meeting with my Neurotologist on the 30th and I am going to bring up the idea of allergy testing/ shots.
Thank you all for taking the time to reply. Your feedback is very encouraging! I should definitely try the antivirals. I have had one course of one week of Brivex, but from what I read from this forum, the minimum treatment is at least 3 months with a dosage of approx. 800mg 3 times a day, is that right? The difficulty will be to find a doctor who is willing to prescribe those antivirals. All the doctors I have seen (and there were quite a few!) told me that they could not do anything anymore for me and that I should just accept my hearing loss... Thanks again for your advice.
Have you talked to your family dr? A good approach might be to remind her that the otos have given up, that you have heard a number of people report great improvement with av's, that all the 'next steps' are more risky drugs such as prednisone etc or destructive surgeries. That you know it is a gamble but you understand that antivirals are generally well tolerated by patients and this approach is used by - among others - the House Ear Clinic. That you want to know you left no stone unturned since you hearing is at stake. A lot of times, drs are willing to go off label as long as they see little risk, know the patient knows there is no guarantee and if the patient is asking, not trying to say they know more than the dr. Good luck.
You should arm yourself with as much information as you can before you see your doctor. Several people have had their Drs. prescribe AVs after presenting them with research papers supporting the Meniere's / Viral theory. Here is one such paper: http://www.ncbi.nlm.nih.gov/pubmed/19142031 Another approach (which I took) is to find a Dr. close to you who you know supports the use of AVs and go directly to them. I live 2 hours from Dr. Gacek (in Worcester MA) - best road trip I ever took. There are several such doctors known to folks on this board - you could start a new thread "Looking for Dr. to prescribe anti virals near XXX".
hi angrychicken good to hear from you. Actually there is a thread in the old database of doctors that prescribe antivirals. Doctors you would recommend in your area http://www.menieres.org/forum/index.php/topic,10773.0.html
hi Vaita- i don't know how long ago your fullness started, but I would talk with your doctor about trying a round of prednisone. My first bout of CH was about 10 days old when I saw an ear doc - and they immediately put me on a two week prednisone taper which cleared the fullness in a matter of days. I've had very mild flair-ups in the year since, but never needed to do another round of prednisone. It doesn't work for everyone, but it's certainly worth a try and will give you some kind of clue about what's causing your CH. (i.e. immune response or something else.) Apparently the longer you wait after the fullness begins, the less likely it is to help - so I'd look into it asap if you're interested. good luck...!
Hello all, I am new to this forum and find the stories very helpful. I have been diagnosed as having cochlear hydrops with classic symptoms of fullness, some hearing loss in low frequencies, sound distortion and occasional roaring/tinnitus. These symptoms seem to be improving slightly since starting 8 months ago but have been getting worse this summer. No major tinnitus or dizziness thank goodness? I have similar stories of many I read above. I notice that in the morning upon awakening I have no symptoms but progress rapidly during the day. However, when taking any short "naps" during a day, I awake with significant fullness and sound distortion. Has anyone experienced worsen symptoms after taking any short nap? Why would that be? Do you suggest a round of AV at this point of time to be helpful? Mayo clinic suggests no value seen especially at this point of time. Also, anyone seen benefit of using Betahistine for CH? Thanks
Many people on this board have had significant improvement with anti virals even though they started much later than 8 months after the onset of symptoms. There is nothing to lose: anti virals are well tolerated by most people, and you probably aren't receiving any treatment other than controlling symptoms. If the herpes virus is the *cause* of your case, you could find yourself much better off than you are now.
Yes, I concur with June's post. I would add that you should use any method possible to get a hold of some antivirals, you have a good chance of recovering your hearing, IMO.
I did not start antivirals til 9 months into the CH. I very quickly ( a month) lost all distotion and over time, combined with allergy shots had my hearing return to normal range from a 40-50 dcb loss in lower frequencies. I got the audiograms to prove it. My improvement began in 2008 and is still holding. I wish I had known to try antivirals immediately. I wonder if I might not have suffered 'any' permanent loss. As is, my hearing is wonderful compared to those first 9 months. I even lost the 24/7 LOUD roaring tinnitus. But I have mild setbacks about once a year and I still fear it could progress one day to classic menieres. Gibe antivirals a shot.
I had a similar situation which occurred last July. I knew something was wrong but it felt plugged and I absolutely didn't register it as a loss. I took a round of Prednisone which didn't help. Then I had a dexamethasone shot to the ear...not sure if this helped. Shortly after I starts taking claritin for an allergy and ironically the fullness began to disappear. I stayed on that and started the JOH regimen shortly after and I began to have slow improvements. This was prob last September. By Jan my hearing was almost back to normal (just a mild loss in the lowest frequency). I slowly stopped taking all the supplements last April and so far so good. My diagnosis is cochlear's hydrops and I see a neuro otologist. (Sp?) Periodically my symptoms will come back for a day or two and go away. I found this to coincide with times I am more naturally bloated.
I wanted to add that in addition to the fullness and hearing loss I also had tinnitus and horrible distortions. The tinnitus cleared up first and the distortions stuck around for months even after the hearing returned. That is often the first thing to return when I have these mini bouts.
Hello I am back from my ENT and although I was well prepared and gave him all the documentation on the benefits of antivirals I could find, he refused to prescribe them stressing out all the serious side effects these medications can have. He showed me on his compendium that in some rare cases, acyclovir was found to have fatal effects or serious effect such as kidney failure, etc.. So my ENT said that he did not want to take responsibility for putting me on these meds, especially since I had told him that I had had kidney stones 10 yrs ago. He managed to scare me but I was really disappointed in not being able to try it out as I was hoping it could help regaining some of my hearing. So my question to you is have you heard about those side effects of acyclovir and the like? Did you doctors also warn you of such effects when prescribing them to you? Should I try another doctor or is there really a risk that I trade one evil for a potentially greater one? Thanks
It is my understanding that they are not good for people with lliver or kidney disease or damage. Otherwise they are well tolerated with many fewer side effects than drugs like prednisone. 'In rare cases' , diuretics and most anything can be fatal. I would talk to your primary care doctor who knows your history and see what s/he thinks about the risk to you of your using them.
Here are three studies showing long term use of acyclovir, its safety and effectiveness http://www.ncbi.nlm.nih.gov/pubmed/8481018 http://www.ncbi.nlm.nih.gov/pubmed/2895840 http://www.ncbi.nlm.nih.gov/pubmed/12353186