Avatar universal

Looking For More Info on Sporadic Hearing Loss/Possibly Cochlear Meniere's Disease

Hi. This is, for me, a complex situation and I would really appreciate just knowing that someone else may be going through this. I'm not looking for a quick fix and am not intending to use this board to replace a medical diagnosis but I'm very scared and just would like to compare notes with at least one other person who is going through this.
I'm 51 years old and have, until last summer, always had very good hearing. I'm also blind and so I greatly depend on my hearing for just about everything. This past July, I began to feel a clogged feeling in my right ear, very similar to what it feels like when you're in an airplane and you feel the pressure changes we're all accustomed to. After around a week I went to a doctor who believed it was eustation tube dysfunction and put me on a round of steroids. At that time, the steroids seemed to fix the issue and my hearing quickly returned, sounding totally normal. A week and a half after I completed that round the feeling came back and I was put on a second round of steroids. This time, the meds helped somewhat but not totally and a third round did nothing at all. Eventually, this resulted in partial hearing loss in that ear, mainly with low frequencies. This hearing loss, while not desirable, was at least stable in its behavior for about a month. Then, on a Monday morning, I woke up to loud tinitus in that ear and realized, to my shock, that I was, to my estimate, about 80-85 percent deaf in that ear. This was a new change and we went to a see a hearing specialist, who honestly couldn't identify what was happening with me. He gave me a transtempanic injection and put me on another round of steroids. What eventually happened was that the ear would eventually open back up. I could always tell when it was about to unclog as the tinitus would, temporarily, get louder, which I eventually learned was my indication that my hearing would temporarily return. Once it would return, the tinitus would dissipate and I would have hearing which was fairly normal for about two days or so. Then, I would eventually feel it shifting downward and then it would go down again for about four hours, and then would cycle back up, with the tinitus getting louder to let me know it was opening. This cycling, while not desirable, was at least predictable. I eventually saw a top specialist in my state who believed it was cochlear Meniere's, a form of Meniere's without the vertigo. I was given a second injection and also was prescribed Flurinef, both of which did very little and the cycling continued. I'm already being treated for hypertension and the flurinef was spiking my blood pressure at levels that were freaking me out and so, with my specialist's permission, I stopped taking those meds, which he did warn me about, btw. Now, the cycling is no longer predictable. At times, I've had about a week of normal hearing and sometimes days where it goes down, then a bit upward but never normal. I temporarily went back on the Flurinef again and, this time, it seemed to help a great deal, but bp was higher than I liked and so I felt it was safer to stop it. During this time, I asked my specialist for recommendations on an amplifier and he recommended a Pockettalker. I ordered one and, even at my ear's low point, it really helped. However, tonight my hearing went so low that even the Pocketalker didn't help and this really freaked me out. It will, eventually, cycle back up and I can almost hear the tinitus changing to the point where I think it's about to shift upward again. I'd really like to hear from others in this situation to compare experiences. Were there other meds or techniques that worked for you? I'm actually willing to use a hearing aid if I can be fitted for one but I'm not sure if I can since the cycling is so unpredictable. Is there anything I can suggest to my specialist, even if it's crazy? I'm a little scared right now and was shocked that it got so bad that even the Pocketalker couldn't help. I'm sorry this message is so frenetic/I'm so grateful that this board exists and really want to get enough in this message to get this out tonight as I really feel that I need some support. Thanks for reading this.
3 Responses
Avatar universal

This is not an answer. I just felt it might be a good thing to register so that I could say that you are not alone. For about two months I have been suffering *exactly* the same symptoms as you in my left ear.

I had Meniers in my right ear for about 20 years which just suddenly cleared up without any care or medication.
20824738 tn?1524645910
In late 1861 a physician prosper Ménière theorized that attacks of dizziness, ringing in the ear are also called tinnitus and hearing loss start from inner ear not from brain. After  the theory accepted Dr. Prosper Ménière start its extensive merger with the inner ear disease and inner ear balance disorders.

Ménière’s disease is an inner-ear condition that can cause dizziness, a specific type of dizziness in which you feel as though you’re spinning. It also can cause ringing in your ear, hearing loss that comes and goes and a pressure in the ear.

Generally, only one ear is affected. The hearing loss after a long time can be converted into a permanent hearing loss. The disease name coming from a doctor Prosper Ménière who suggested in 1861. Meniere’s disease can occur at any age, but it normally began between the ages of 20 and 50. It is a long-term condition but various treatments can help relieve symptoms and minimize the long-term impact on your life.

These diseases occur due to cracks in the membrane separating endolymph from the other inner ear fluid, perilymph. Some people which are affected by Ménière’s disease find out certain situations are called triggers, can set off attacks. These triggers involve stress, fatigue, overwork, emotional distress, additional illnesses, pressure changes, certain foods, and too much salt in the diet.causes or triggers of Meniere’s disease include:

Alcohol use
Head injury
Infection to the inner or middle ear
Side effects of certain medications
Stress or anxiety
Family genetics of the disease
Respiratory infection
Recent viral illness
Abnormal immune response
These are some symptoms of Meniere’s disease:

Recurring episodes of vertigo. Spinning sense began and stops spontaneously. Episodes of vertigo (dizziness) starting without warning and generally last 20 minutes to several hours but not greater than 24 hours.
Hearing loss. Hearing loss in Meniere’s disease may come and go, particularly early on. Eventually, most people have some permanent hearing loss.
Ringing in the ear (tinnitus). Ringing in the ear is the recognition of a buzzing, roaring, whistling or hissing sound in the ear.
Feeling of fullness in the ear. People with Meniere’s disease often feel pressure in the affected ears (aural fullness) or on the side of their heads.
There is no cure for Meniere’s disease but there are many different ways to manage and control the condition and helps to control symptoms. Treatment of Meniere’s disease categorizes into the following categories:

Medication: The most common symptom of an attack of Ménière’s disease is vertigo. Medication can help relieve vertigo and shorten the attack.

Air pulse generator: Repeated delivery of small air pulses transfer into a tube placed in the eardrum had some variable success.

Surgery: These following surgical procedures suggested depending on the patient’s situation:

Endolymphatic sac shunt surgery
Vestibular nerve sectioning
20849196 tn?1535506790
I too got diagnosed with SSHL about a month ago. I had profound hearing loss in my right ear. The ENT thinks It was caused by a small stroke . The Cat scan and MRI didn't show anything. But after reading the studies and treatment for SSHL I called the Hearing center at Albany (NY) Medical center. They started me on inner tympanic steroid shots. You should do this within 7 days of the event to recover your hearing. Anyway my low frequency hearing has recovered and some of the midrange and high frequencies. But I still have fullness and the tinnitus is driving me nuts. Albany Med Hearing center is a top draw place to go !   I can certainly understand the anxiety that comes with this because I have it as well. I recommend a low dose Xanax to help cope with the loss. If you prefer natural stuff about 2 tsp of Inositol in your tea three times a day produces the same calming effect. I got this off the Mayo Clinic website. Works great.  
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