I was unfortunate to suffer from Meniere’s for many years… and also fortunate that it burned itself out after about 8 years or so, it took most of the residual hearing I had left in the process, I would get cluster attacks from 1 to 6 weeks duration and it was not uncommon for me to be in my bed for a week solid and even getting up to the toilet to have a shower etc was difficult without assistance, nausea, spinning room or walls coming in and out, vertigo, no balance whatsoever and unbearable tinnitus that on a scale of 1 to 10 hovered around 9 just before and through each attack which could last for days on end… A terrible affliction which weighed heavily on my self, but was perhaps even worse for my wife and family as I was incapable of work and I couldn’t plan ahead for anything!!! There were moments that I would easily have taken my own life, such was the depth of my depression… But, suicide doesn’t take the pain and suffering away, it just passes that pain on to your loved ones!!! Eventually I was able to predict fairly accurately when an attack was imminent, I was even confident enough in my predictions that I was able to drive again at certain times, granted I would not drive far for obvious reasons and only occasionally I had to pull over and wait for an imminent attack, roll the seat back and ride it out till the meniere’s attack subsided… I cut out all alcohol, caffeine of any shape or form, reduced my salt and sugar intake as much as possible… I always tried to avoid large stores or shopping malls with parallel flooring, which could trigger an attack! In a way, tinnitus was my guide and any change for the worse was the catalyst that an attack was very imminent… eventually the attack’s began to decrease over a year or so until they just abruptly stopped, the only lingering damage was my severe/profound hearing loss and my balance is occasionally suspect… Anyone with this disease has my heart felt sympathy and hopefully like me it burns itself out, for the last 12 years I have been able to hold down full time employment and nowadays I work as a supervisor with criminal justice… just noticed this was an old post, which I have previously submitted a comment, no matter this is a more in depth reply, which will hopefully help some of you to come to terms with this disease… good luck. Cheers Kev.
I also have Meniere’s, with MAV (migraine associated vertigo). I also have lost my balance function and my vision is my balance system. Triggers for me are specific sounds, causing increase in recruitment/hyperacusis/tinnitus. I tried the meclizine and also valium, neither helped. For more than 15 years now, I have been using klonopin when symptoms increase, and it usually will prevent an attack of rotational vertigo/vomiting. If that doesn’t help, and i end up with vertigo I have oral promethazine to take. Haven’t had to go to ER for many years since I have used these meds.
I have Resound Linx2 961’s but will be replacing them later this year, unsure of what to try. I wear aids in both ears, but the left is profound hearling loss, and the aid mostly is worn to mask the tinnitus and buffer non verbal sounds which trigger symptoms.
Good luck to all, as we all struggle to find coping solutions. Probably one of the most devastating things about hearing loss or Menieres, is the isolation if causes and the inability to participate in some family events. The situation is made even more difficult for others to understand, since Meniere’s is not a visible disability (unless you watch some of us walking). I use a trekking pole, or my Service Dog for balance assist. I prefer using my SD,
Can you offer some clarifiacation on how long to expect hearing loss during an Attack? I know everone has very different attacks and symptoms, but I am hoping someone can offer some background for refernce. Woud hearing loss last anywhere from minutes to days? Or if it got into the days, should my assumption be that perhaps it won’t return? What were your experiences if you don’t mind me asking. Thanks for anything you can offer here!
In all truth I cannot give you a definitive answer Crinne… I wish I could. During an attack, I could still hear, well I could hear after a fashion, I would say it drops a few decibels, but my hearing was also sometimes severely distorted, not all of the time though, most of the time my tinnitus would be extremely loud, so loud at times it was difficult to concentrate on anything else. Meniere’s is very difficult to diagnose because the symptoms vary so greatly from patient to patient. I was told each attack partially destroys whatever residual hearing you have left? I have tried to erase Meniere’s from my memory, my times and dates may not always be in sync, full blown Meniere’s is a living nightmare that goes on for years, tis extremely stressful to live with and after its gone you worry about if it will ever return… In truth, I was delighted and sad when the attacks stopped, delighted to be free from any Meniere’s attacks and sad in the knowledge most of my hearing was gone with it. You have my understanding and my empathy if you have Meniere’s… Kev.
Dear Hearing Sufferers, has anyone in this group tried the perfusion process? I would appreciate a response from those who have tried and the results. To Shea Ear Clinic, I request them to share the experience of individuals who have tried perfusion. Please give us your feedback as to its effectiveness and any side effects
Thanks
I’m new on here but seeing your question…I had a dexamethazone perfusion at Shea Clinic years ago. It did help bring up my high frequencies in my left or worst ear. I since had about 4 steroid shots in my better ear and on 3 occasions saw clear improvement over a few frequencies on my audiograms. The last one we tried when I felt a loss of hearing did not help at all. This was 4 years ago.
I am again experiencing a loss of hearing and will see my ENT in June. Trans tympanic steroid injections…I was helped by most of them. Cochlear hydrops diagnosis with three vertigo attacks over 30 years.