In reply to Passerby...
I feel your frustration with one sided deafness and hearing aids. When I had SSHL in my right ear, I kept searching for treatment and solutions for over a year praying every day that my hearing would either return in full or partially, all in vain. I did try the acupuncture for a few months, but it did not restore any of my hearing. Since I was paying for the sessions, I had them treat for both sciatica and hearing. The acupuncturist was very thorough and knowledgeable. The sciatica did improve drastically, but alas, not the hearing. Of course, that does not necessarily mean it would not work for you.
Initially I went through the MRIs and two rounds of steroid therapy and every test they had for the hearing loss. Sometimes there just aren't any answers.
Ultimately, I obtained a Cochlear Osia 2 processor. Although this did not restore my hearing as I knew it, it does assist in word differentiation and directional hearing which has been very helpful in my social interactions and day to day living. I wish you luck in your search for a solution. Just find a very good audiologist to assist you, preferably one associated with an ENT who is current on hearing solutions other than regular hearing aids.
Reply to a post by december 1011 on the hearing discussion list:
First, Meniere's Disease (and most inner ear diseases) are extremely difficult to diagnose, beyond the training that ENTs get. As a result, 80% of those diagnosed with Meniere's actually have something else; and new diseases continue to be identified. I've had Meniere's most of my life, although it wasn't formally diagnosed until I was in my 40s (and stopped taking birth control pills, i.e., hormones). I was sent to an ENT who patted my hand and said, " Now, now, Dearie, just quit your silly job, take Valium, and stay in bed." Although at that time (36 years ago) allergies had been recognized as often contributing to the hell of Meniere's, he simply shrugged off my question about allergies with, "I don't believe in them." I often wished I could go back and punch him out. <g> Fortunately, my own primary doc, who often fished with my husband and me back then, said we had to find a decent answer. At that time, because the crises I was having had come on with increasing intensity within a day of the onset of a period, we had a very good clue about what triggered the worst days: low hormone levels. We spent four years floudering around before we found a safe combination of estrogen and progesterone; in less than a month after starting taking both daily, I quit having V&V (vertigo and vomiting) crises--I had been having them as often as 3X/week.
Because my primary doc assigned me the task of learning everything I could and bringing articles to him to review, I learned a great deal about Meniere's. I also found an online discussion group and was one of the moderators for decades, until FB pretty much replaced it. Since I'm a book designer/publisher by profession, I nagged VEDA into doing three books about inner ear disease back in the mid 90s;
"Meniere's Disease, What You Need to Know" was the first book published in the US about the disease. So, I ain't a doc, but I've learned a great deal, both from my own experiences and from moderating a group of so-called Menierians. Here are some basic facts:
1. If possible, see a neurotologist, esp. if you believe a diagnosis will fix things. (It won't, so it may not be worth that effort.)
2. Before taking that step, start a diary or calendar. Note the kind of day you've had AND even the slightest deviation from what's normal for you, especially in terms of diet, stress, rest, weather, exercise, travel, etc. Regardless of what actual disease you may have, you will learn that something or things trigger the really bad days. Once you find your personal trigger, you need to eliminate it or figure out a way to make it a less important part of your life.
3. If you do see a specialist, ask about these diseases that are commonly misdiagnosed as Meniere's: MAV (migraine associated vertigo), sticky platelets, and BPPV (benign paroxysmal positional vertigo). Note that many true Menierians also have BPPV, by the way.
4. Understand that your lifestyle/profession will lay a role in what you are most concerned about--hearing or balance (vertigo). I was an active amateur musician 40 years ago, so the hearing problems really bothered me--I had to quit playing entirely, as it was simply too painful and I didn't feel that I was able to hear well enough to be a part of an ensemble or orchestra. If I had been a tightrope walker, I would have been more concerned about balance issues. (Duh!)
5. True Meniere's involves both hearing and balance. It usually is unilateral (one-sided) when it begins and may well never affect the other ear by going bilateral. The percentage of true Menierians who eventually go bilateral is fairly small, so that's encouraging. (I note that, after 35 years of learning to live with an active unilateral case, I went bilateral, losing most hearing in my "good" ear in an instant. The balance issues came later.) Hearing is less not being able to hear than having both recruitment and distortion. Recruitment means that many sounds, especially sharp, loud ones or constant background noise (like the fans on our wall heaters or the dishwasher) are magnified to unbelievable degrees; a sudden sharp sound like my dog's bark, simply slices through my head like a knife. Distortion makes it impossible to understand what is being said even though you can hear that someone is speaking. Not only do hearing aids not help either of these problems, but it may be impossible to wear an aid if you have a great deal of both recruitment and distortion. The balance issue means that at some point you will have V&V episodes, often lasting for several hours each. Some docs rely on the ranges where you've lost the most hearing to diagnose Meniere's, but that is far from infallible. There is no test to prove conclusively that you do have Meniere's. You will probably have an MRI to rule out an acoustic neuroma, a tumor on the acoustic (hearing) nerve.
6. Years ago, the usual recommendation was a nerve section: cutting the vestibular nerve. This had a 20% chance that you'd never be able to walk again, so I rejected it. It also doesn't deal with balance issues. I also has an excellent chance of leaving that ear totally deaf. Nerve sections are almost never done today. There were also shunts, which drained away the excess fluid believed to be the culprit. One of the early astronauts saved his career by having a shunt. They were very popular 30 years ago, but often failed after a few years. Today, perhaps the best solution is a cochlear implant because it bypasses the part of your ear that makes it impossible to hear--but you still would need to deal with balance issues.
7. MOST IMPORTANTLY, find an expert VRT specialist (vestibular rehab) and DO THE EXERCISES EVERY DAY. Lots of people say that they have done VRT but it didn't help. In my experience, anyone who truly does the work will see will improvement. When your primary inner ear balance system fails, you automatically begin to rely on vision for balance: doing that leads to severe vertigo, because every time your move your head or drive around a corner, you lose your focal point. Your faulty inner ear is saying one thing, while your vision says something else, and you become the battlefield with V&V crises. You will need to do VRT EVERY DAY FOR THE REST OF YOUR LIFE--no cheating, no days off. Even though I'm now bilateral and am 79, I still do difficult instream fisheries data collection in a wild little river that lots of college students have found to be a real challenge. Due to my age, I move more slowly; due to Meniere's, I move more carefully, especially while wading; I no longer routinely do the most difficult instream surveys, leaving those for the younger, fitter folks, but I'm the only one who does all the work in the five miles of the lower river, which means a minimum of hiking/wading 3.5 miles each day that I spend on the river. I wouldn't be able to do this if I didn't do VRT every stinking day, spend some time walking in the dark, etc.
8. If you are having V&V crises, do NOT ever go to the ER. There's really nothing they can do, and all the bright lights, questions, requests to do this or that, only make matters far worse. Just the business of being moved to the ER will prolong the crisis. Let everyone around you know this, so that some helpful person doesn't try to pack you up and transport you to the ER.
VRT is Vestibular Rehab, a very special type of physical therapy. Perhaps the first and certainly the best VRT center is at Legacy Good Samaritan in Portland, Oregon. Dr. F. Owen Black set the clinic up decades ago and worked with NASA to test early astronauts before and after their flights to see how weightlessness affected their balance. He did lots of work with John Glenn, then the oldest person to go into space. Dr. Black developed various "fun house" machines to test one's ability to balance, i.e., function normally. Another famous early clinic is House in Los Angeles. Other clinics are now in many other cities across the country. The basic thing about balance is that there are three balance systems: inner ear (primary), vision (secondary), and proprioception. As we age, we lose inner ear balance, so automatically begin to rely on vision, which is not good: every time you move, your focal point changes, leading to constant confusion. The thing you must learn is proprioception, the information you get from your entire body, especially your feet, ankles, knees. First, stand with your eyes closed, feet fairly close together...you may wobble. Practice, thinking about what your feet are telling you. Move on to walking short distances in safe places (hallways, for example) or with someone next to you, eyes closed. Make a practice of walking in very low light or dark places every single day. Don't use lights when walking outside in safe places (nothing to stumble over, fall into, etc.). There are also many exercises designed to help you learn to use proprioception. A simple one is to lay a length of 2x4 flat on the floor and walk along it. You also can build a small "platform" (2x4s on their sides at each end, topped with 1x4s to stand on). Eyes open, step down with your right foot until your balance is secure, six times. Repeat, eyes closed. Then do the same thing with your left foot. You may be surprised to see which way you are headed when you open your eyes! Another simple exercise is to march in place on a large piece of foam that's 3-4" thick, eyes open, then closed. Until you are secure, have someone next to you while you're doing these exercises. If you do them for 10-15 minutes every day, you will be far more secure in your balance within a month. I've done VRT for nearly 40 years. At 81, I still do instream surveys for our state fisheries agency in a very remote stream by myself, no cell reception for 20 miles. On top of being a "vestib," I never learned to swim, but I cross rivers...carefully, using a wading stick. VRT will give you confidence about where you are in space, enable you to move comfortably in your daily life.
Vertigo, nausea, unable to see correctly and severe ringing in the ears. When an episode occurs I must lay down as it's too difficult to walk. The reason I asked about the Betahistine is I had heard on NPR an interview with a Dr. David Kaylie MD FAC an associate Professor of surgery head and neck and Communication Sciences at Duke University speak of Betahistine as a med that they had had success with for patients with Meniere's. Also that it has been used for Meniere's in Europe for decades. My ENT dr. was not familiar with it nor was my family dr.. Am hoping someone that has taken it can pass on an opinion and also how to find a doctor that is aware of this medication.
I'm in the USA and take it although I don't actually have vertigo - have been in remission from that for over a decade. It is not FDA approved but you are allowed to import it from Canada or the UK. My doctor writes a prescription and sends it to North Drug Store in Canada. It's not cheap/not outrageous, but if it works for you would be well worth it. Tell your regular hearing doctor about it and ask them if they know about getting prescriptions from Canada. I like North because they always make sure I get offered the cheapest option - sometimes from Canada, sometimes from UK.
It appears through some inquisition that I did that you can in fact get Betahistine with a prescription from your physician to a Compounding Pharmacy. Just FYI! Providing you physician has heard of it. And it not, why not. There is tons of professional information on Betahistine. Physicians need to understand that studying and research does not end after Residency and or Fellowship! It's a life time commitment!
I have meniere’s disease and feel the key to controlling it is sodium restricted diet aroumd 1200 mg daily. The first year had 6 attacks. They were horrible but done in 2 hours. Half were next day after restaurant food (salty). I don’t tolerate HCTZ (diuretic) very well but rarely use it. My VNG/ecog were markedly positive for left ear meniere’s but I have bilateral symptoms now. Tinnitus is a nuisance but I have maintained hearing except bilateral high frequency stable loss over past two years. I already do not drink alcohol or caffeine so no problem skipping these. The low sodium diet starts at the grocery and requires great discipline but I am testament to controlling this disease with strict low salt compliance. Almost three years in and I function normally.
Vertigo, nausea, unable to see correctly and severe ringing in the ears. When an episode occurs I must lay down as it's too difficult to walk. The reason I asked about the Betahistine is I had heard on NPR an interview with a Dr. David Kaylie MD FAC an associate Professor of surgery head and neck and Communication Sciences at Duke University speak of Betahistine as a med that they had had success with for patients with Meniere's. Also that it has been used for Meniere's in Europe for decades. My ENT dr. was not familiar with it nor was my family dr.. Am hoping someone that has taken it can pass on an opinion and also how to find a doctor that is aware of this medication.
I started off with a serve case of vertigo little over three months with dizziness, balance and head pain. I have been to the ENT three times, my primary doctor and still can’t get any answers. Also, I had MRI and CT scan on my head and they came back normal. My legs feel like I am moving buy I am still. If I turn my head , I get dizzy . Now, I am going to physical therapy for balance but I don’t see any improvement. It’s so frustrating. Most of my doctors is at Duke and still can’t find any answer. Now, I am trying another primary doctor in another health care system trying to find some answers.
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In reply to Passerby...
I feel your frustration with one sided deafness and hearing aids. When I had SSHL in my right ear, I kept searching for treatment and solutions for over a year praying every day that my hearing would either return in full or partially, all in vain. I did try the acupuncture for a few months, but it did not restore any of my hearing. Since I was paying for the sessions, I had them treat for both sciatica and hearing. The acupuncturist was very thorough and knowledgeable. The sciatica did improve drastically, but alas, not the hearing. Of course, that does not necessarily mean it would not work for you.
Initially I went through the MRIs and two rounds of steroid therapy and every test they had for the hearing loss. Sometimes there just aren't any answers.
Ultimately, I obtained a Cochlear Osia 2 processor. Although this did not restore my hearing as I knew it, it does assist in word differentiation and directional hearing which has been very helpful in my social interactions and day to day living. I wish you luck in your search for a solution. Just find a very good audiologist to assist you, preferably one associated with an ENT who is current on hearing solutions other than regular hearing aids.
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1 ReactionJoyces, what is VRT WHICH MUST BE DONE EVERY DAY?
VRT is Vestibular Rehab, a very special type of physical therapy. Perhaps the first and certainly the best VRT center is at Legacy Good Samaritan in Portland, Oregon. Dr. F. Owen Black set the clinic up decades ago and worked with NASA to test early astronauts before and after their flights to see how weightlessness affected their balance. He did lots of work with John Glenn, then the oldest person to go into space. Dr. Black developed various "fun house" machines to test one's ability to balance, i.e., function normally. Another famous early clinic is House in Los Angeles. Other clinics are now in many other cities across the country. The basic thing about balance is that there are three balance systems: inner ear (primary), vision (secondary), and proprioception. As we age, we lose inner ear balance, so automatically begin to rely on vision, which is not good: every time you move, your focal point changes, leading to constant confusion. The thing you must learn is proprioception, the information you get from your entire body, especially your feet, ankles, knees. First, stand with your eyes closed, feet fairly close together...you may wobble. Practice, thinking about what your feet are telling you. Move on to walking short distances in safe places (hallways, for example) or with someone next to you, eyes closed. Make a practice of walking in very low light or dark places every single day. Don't use lights when walking outside in safe places (nothing to stumble over, fall into, etc.). There are also many exercises designed to help you learn to use proprioception. A simple one is to lay a length of 2x4 flat on the floor and walk along it. You also can build a small "platform" (2x4s on their sides at each end, topped with 1x4s to stand on). Eyes open, step down with your right foot until your balance is secure, six times. Repeat, eyes closed. Then do the same thing with your left foot. You may be surprised to see which way you are headed when you open your eyes! Another simple exercise is to march in place on a large piece of foam that's 3-4" thick, eyes open, then closed. Until you are secure, have someone next to you while you're doing these exercises. If you do them for 10-15 minutes every day, you will be far more secure in your balance within a month. I've done VRT for nearly 40 years. At 81, I still do instream surveys for our state fisheries agency in a very remote stream by myself, no cell reception for 20 miles. On top of being a "vestib," I never learned to swim, but I cross rivers...carefully, using a wading stick. VRT will give you confidence about where you are in space, enable you to move comfortably in your daily life.
I'm in the USA and take it although I don't actually have vertigo - have been in remission from that for over a decade. It is not FDA approved but you are allowed to import it from Canada or the UK. My doctor writes a prescription and sends it to North Drug Store in Canada. It's not cheap/not outrageous, but if it works for you would be well worth it. Tell your regular hearing doctor about it and ask them if they know about getting prescriptions from Canada. I like North because they always make sure I get offered the cheapest option - sometimes from Canada, sometimes from UK.
It appears through some inquisition that I did that you can in fact get Betahistine with a prescription from your physician to a Compounding Pharmacy. Just FYI! Providing you physician has heard of it. And it not, why not. There is tons of professional information on Betahistine. Physicians need to understand that studying and research does not end after Residency and or Fellowship! It's a life time commitment!
I have meniere’s disease and feel the key to controlling it is sodium restricted diet aroumd 1200 mg daily. The first year had 6 attacks. They were horrible but done in 2 hours. Half were next day after restaurant food (salty). I don’t tolerate HCTZ (diuretic) very well but rarely use it. My VNG/ecog were markedly positive for left ear meniere’s but I have bilateral symptoms now. Tinnitus is a nuisance but I have maintained hearing except bilateral high frequency stable loss over past two years. I already do not drink alcohol or caffeine so no problem skipping these. The low sodium diet starts at the grocery and requires great discipline but I am testament to controlling this disease with strict low salt compliance. Almost three years in and I function normally.
I started off with a serve case of vertigo little over three months with dizziness, balance and head pain. I have been to the ENT three times, my primary doctor and still can’t get any answers. Also, I had MRI and CT scan on my head and they came back normal. My legs feel like I am moving buy I am still. If I turn my head , I get dizzy . Now, I am going to physical therapy for balance but I don’t see any improvement. It’s so frustrating. Most of my doctors is at Duke and still can’t find any answer. Now, I am trying another primary doctor in another health care system trying to find some answers.