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Has anyone with Meniere's Disease been prescribed the compound drug Betahistine?
Hello I suffer from menieres disease, any body to share experiencies?
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Hi @susyq213, welcome to Connect. You'll notice that I moved your message to an existing discussion about Menieres Disease (https://connect.mayoclinic.org/discussion/menieres-disease-2/). I did this so that you can more easily connect with other members with a similar experience, like @morninglory @grannyjack @estrada53 @trishanna and others. Click VIEW & REPLY to see past posts and add a reply.
Susyq, how long have you been living with Menieres? What do you find the most challenging?
First, are you certain that you have Meniere's? About 80% of people diagnosed with Meniere's actually have some other inner ear disease. Regardless, you should keep a diary or calendar showing the kind of day you've had (good, so-so, bad, awful) and even the smallest thing you did that was different. Most Menierians have triggers that cause bad days and/or crises. Triggers can be stress, lack of sleep, inhaled allergens, food allergies (esp. dairy), lack of sleep, or low hormone levels (esp. if you're 40 or older). You can have more than one trigger, too. Over a period of weeks or months, you may be able to learn what your personal trigger is and do whatever you need to do to deal with it. I've had Meniere's for well over 50 years, but it only became a serious problem when I quit taking birth control pills (hormones) in my mid 40s. I spent 4 years working to find hormone replacement (HRT) considered safe for someone my age that kept the disease in control. During that time, I lost most hearing and balance function in my right ear. Over time, I was able to reduce the amount of HRT (you need less as you age) until I was taking a fraction of what I'd initially used. I did vestibular rehab every day and was able to function well, although age-related deafness increased in my left ear over time. Then, on May 24 at 6:45 p.m., my left ear quit hearing useful sound and roaring tinnitus moved in. So, I've just joined this group in the hopes of finding text-to-speech apps that will enable me to continue to live an active life at 77.
Hi @joyces, I extend a welcome to you as well. Such great advice for @susyq213.
Joyce, after living with Menieres for over 50 years, you certainly have learned to modify and adjust to the triggers and changes. Now you're faced with a new challenge of roaring tinnitus. You may be interested in these discussions:
– Tinnitis https://connect.mayoclinic.org/discussion/tinnitis/
– Controlling Tinnitus: What works for you? https://connect.mayoclinic.org/discussion/tinnitus-control/
– Anxiety and disbelief over sudden hearing loss and tinnitus https://connect.mayoclinic.org/discussion/anxiety-and-disbelief-over-sudden-hearing-loss-and-tinnitus/
As yet, there isn't a discussion dedicated to text-to-speech apps. I'm sure many in the Hearing Loss group have recommendations and experiences to share. Would you mind starting a new discussion about this? Here’s how to start a new discussion:
1. Go to the Hearing Loss group homepage here: https://connect.mayoclinic.org/group/hearing-loss/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like “Looking for suggestions for Text-to-Speech apps”
4. Write your message.
5. Click CREATE DISCUSSION
Re Meniere's: Those of us who were moderators of the Meniere's Discussion Group that was replaced several years ago by a FB group have come to believe that there may not be a single Meniere's Disease, but several slightly different inner ear diseases impossible to diagnose, so they're all give the Meniere's tag. Again, about 80% of those diagnosed with Meniere's don't fit the diagnosis, have something else:
A few really lucky people have, believe it or not, sticky platelets. This is alleviated by taking mini doses of aspirin every day, and all symptoms disappear.
Lots of folks diagnosed with Meniere's actually have MAV, Migraine Associated Vertigo, which is treated with standard migraine meds. These people do NOT necessarily have headaches, but they may have an aura precede an attack. They can live very well once they find an anti-migraine med that works for them.
Some people have BPPV (Benign paroxysmal positional vertigo), which can be treated with the Epley maneuver. As people age, most will get BPPV to a minor degree. Many Menierians also have BPPV. If you have very brief intense vertigo after moving your head quickly, it may well be BPPV. Lots of people notice it while waking up and turning over. I joke that you could tape $100 bills to the ceiling and I might not ever see them, because I can't look up quickly. I've only known of one person who was severely compromised by BPPV. BPPV does NOT cause classic Meniere's crises (hours of vomiting).
Regardless of what kind of inner ear disease you have, you need to do vestibular rehab (VRT) to learn not to use your second balance system. Your primary balance system (inner ear) no longer works correctly, so you will automatically try to use your vision (second balance system) instead. This leads to dreadful fights within your body because every time you move your head or drive around a corner, your focal point changes, and you don't know where you are in space. This is also what causes the crises of hours of vomiting; your eyes and your remaining inner ear function (yes, some is still there) are fighting, and your body's the battlefield.
VRT teaches you to use your third balance system, proprioception. In simple terms, if you're standing on a viewpoint and the wind is blowing hard, proprioception tells you how much to lean into the wind in order to stay upright. You need to learn to pay attention to what your feet tell you. The first exercise is to stand, feet fairly close together, eyes closed. Concentrate on what you feet say as you try to stay upright without tipping from side to side. (Have someone stand next to you when you first do this.) From standing, progress to walking short distances with your eyes closed, or in the dark, in a place where there's nothing to trip over, preferably in a hallway to begin with. When you walk "normally," concentrate on the messages your feet give you. If you've been staring at the floor or ground ahead of you, instead, glance down to ensure that there's nothing to trip over, then look ahead or even to the side as you walk the next few feet. Amazing what's out there in the world! If you practice VRT for 10-15 minutes every day, you will soon be more comfortable with your place in space. Once you have begun to practice proprioception, you should go out of your way to walk in low light situations, with "points" for rough, uneven ground. Again, always know what's ahead…be safe. I live in a spruce forest on a very hilly piece of ground where the mowed area is pocked with gopher hills. I walk outside in the dark (no ambient light here), either around in the acre we mow or on the gravel road between our place and the Pacific. If I skip VRT for even a day, I am less confident of moving around, and I have more trouble knowing where the things I reach for are…exactly.
If you have developed the "Meniere's walk where you walk with your feet a distance apart in an attempt to balance, make an effort to walk with your feet closer together (more normally). Don't "furniture walk" where you hang onto whatever you're walking past. Walk upright, looking straight ahead, with upright posture.
Another form of VRT is to dress standing up without touching a dresser or counter next to you. Women get extra points if they can don panty hose standing without touching a stable surface. You'll find that you're less stable when you first wake up, so don't try this until you've moved around for at least a few minutes.
You'll hear, as has been written by members of this group, about various things that must be avoided, salt being the most common. This gets back to what we refer to as "triggers," and they're different for all of us. Because my trigger is abnormally low hormone levels, salt has zero effect on how I feel. Trying to live on a strict low-salt diet can backfire when you are in a situation where you have to consume "normal" food. It's actually healthier to simply avoid excess salt; the normal US diet involves more than twice as much salt as anyone should consume. Again, we all have different triggers and what's a trigger for me may have zero effect on you.
The one thing that works for all of us is VRT, so learn to do it and do it every day.
End of lecture from someone who's done VRT every day for over 30 years.
Hi!!!! Thanks for your reply!! it is so encouraging to see that I am not the only one suffering from this. Yes I am certain it is Menieres, they diagnosed me 35 years ago…..I am 64 today, but when I was in my late 30s the kill the nerve in the left ear to stop the violent vertigo attacks that happened 2 to 3 times a week. I had young children then, and I needed help desperately. This was done at Columbia Presbyterian in NYC. So….with that unfortunately they left me completely deaf in my left ear. I had a cochlear implant done a year and half ago. It is not working, I only hear sounds not words. But now the right ear which I had 60% of hearing goes up and down, there is days where I a can't hear my husband next to me, it is awful. I just had the worst menieres attack last week, had to be taking to the hospital.
I also have another autoimmune that causes sudden hearing loss. I am in the hands of Dr. Vambutas at LIJMC in Long Island and Dr. Wanna at Mt. Sinai. I had done Anakinra injections, and I almost ready to start them again, it depends on the hearing test I am getting today. If they don't work , then they want me to start on infusions of rituximab………..to try to bring the hearing back in the right ear………it's a mess, really.
Life it's not easy…….living dizzy it's not easy..
I wish you the best!!!!!!!
Yes I take three times a day, it does nothing for me……………
Diagnosed with Menieres almost 50 years ago. My ENT put me into the Menieres group only recently. My original diagnosis was that my vertigo was caused by an allergy to wheat, corn or oats. Rather than do extensive testing, I was told to go to a low salt diet, and truly, that has worked. My problem now is hearing. I've developed tinnitus and have mild to moderate hearing loss in both ears. The hearing problem in my Menieres ear, however, has the added problem of occlusion – the noise from brushing my teeth, for example, makes it impossible to hear anything. I can find nothing on occlusion, and when my audiologist placed a $6,000 hearing aid in my ear, I knew that wasn't the right choice for me. It's been suggested that my problem is indeed caused by Menieres, but I can find no information anywhere on the subject. Just wonder if anyone has any information that would be of help. I do need a hearing aid of some sort – don't have a clue what it should be.
I'm just llke you lost…
With Meniere's, you can sometimes HEAR, but the sound is totally distorted…I think that's what you mean by "occlusion." In addition, you probably have some recruitment, where certain sounds, like a dog barking, are downright painfully loud even though you can't hear useful things. Recruitment generally means that you cannot wear an aid. I was told that my right ear (original Meniere's ear) could never be aided due to the level of recruitment; now my left ear has the same problem. I can be sitting next to someone unable to understand what they're saying, but brought to my knees by the sound of them rustling paper. Most of the time, I can hear that there's speech, but it's to distorted that I cannot understand more than a few words, if that. People who have more timbre (range of sounds) in their voice are less difficult. In addition, Meniere's means you lose your ability to hear high sounds–i.e., most women.
Now, my mind plays tricks on me by playing back sounds I used to hear, apparently to fill the void of silence. For example, sitting in my office the other day, I could swear I could hear the dishwasher running–even though I knew (a) it was not, and (b) I never could hear it from inside the office. I imagined that I was hearing the water swish around and plates rattle. How stupid is that????? Perhaps its like tinnitus, where our bodies attempt to give us something to listen to!
@joyces You are amazing! Have done a bit of research and recruitment appears to be the answer. What's even more amazing is I did not mention my problem with "loud!" My husband, who has a normal hearing problem, turns the sound up fill blast! It hurts! Now, this appears to be a recognized problem, so where are all my ENT people, who seem to be unable to understand my problems? I'm betting recruitment is just one part of the puzzle. My "occlusion" problem actually is more like I've a bucket over my head, not quite what I read about, nor is hyperacusis You've solved one of my big problems, though, and that is listening to any device that transmits or broadcasts sound. For example, the sound of crowds cheering at a sporting event is painful; the same noise live is no problem. I can hear cellphone to cellphone, but not cellphone to landline. I can see it has to do with frequencies. Wonder if people who have a wider range of sound are actually changing frequencies?
Wish I had some suggestions for the other hearing problems you mentioned. I do hear a "whooshing" sound just like my back door opening, but so far, that's my only imaginary sound. I have physical problems with my ear, including discomfort, itching, and a feeling of water in my ear. Seems to me that although Menieres is an old syndrome, we are still a long way from solutions. It's worrisome about not having a hearing aid that will work- thought it was just a matter of finding one.
Again, thanks so much for all the information – very helpful!!
I can relate to the stuffy feeling. I never heard of occlusion but I do have echo-like sounds of my own own voice. Thank you for the information. The echo in my ears drives me crazy. I purchased the $6000 hearing aids – they help me when my ears are not stuffy but still have problems when my ears are stuffed up which is most of the time. I just read about some hearing aids by SeboTek that is supposed to help occlusion. I don't know anything about this company or their hearing aids but wondered if anyone has heard about hearing aids for occlusion . I do not drink milk or eat any milk products, & very little salt. I will definitely stop the chocolate and see if that helps. II have tried some decongestant but it did not help me.
@karinzeigler . Googled Sebo Tek – interesting in that their product greatly increased the frequency range. Shall check further! I'm of the opinion that "stuffy ear syndrome" is in some way allergy-related. Checking on that, too!
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