I haven't tried to follow up but I will! Thank you and I'm so happy for you! I got new hearing aids yesterday. Everything sounds so loud. I'm in the learning curve of how to program them with my phone. It's not that I don't know how it's just a new app & it seems like I can't adjust one without the other syncing to it. I don't really need one in L ear. I sound like I'm talking in a mic. She said get used to it im stuck with them & will lose money if I want to return them. I did same with same group a few years ago & got full refund. I said what good are hearing aids if you don't know what direction sound is coming from. I have tinnitus in R ear and hyperacusis in L. Not complaining ! Just determined to work it to where I can sit at a table & hear everybody!
I hope you are able to hang in there with the hearing aids. I was told the first week of use you will hear yourself speaking and it will sound odd; the next week your voice will sound more normal but other voices will sound odd and finally everything will sound more normal. The goal was to wear them for 2 weeks, 12 hours -14 hours a day. The audiologist was correct, after two weeks, I adjusted and liked them.
@karinzeigler Although I was diagnosed with Menieres, I've not had episode for many years. Now I have tinnitus, hearing loss, and a "feels like there's a bucket on my head" stuffy feeling. Finally got a name for it - occlusion - but can't find anything on it. I can't find anyone who seems to know how to solve the problem - I refuse to spend $6,000 for a hearing aid that, since it fits inside my ear, makes the problem worse. There was a link for Menieres to a blog, I think, but I've lost it.
I've had MD for about 4 years now, only had vertigo episodes for the first year. Just dizzy every now and then. I did finally lose about all my hearing out of my right ear that was attacked. It was becoming harder to hear and function. So I did break down and get a hearing aid. It has helped so much. They put a rubber filter on it and I don't hear any ringing when it's on. It has also helped my balance and being able to stay in a room with lots of noise. The ear tech also told me that they are seeing a high number of people who don't fix their ear with a hearing aid have dementia later in life. It's due to you making your brain have one ear do all the work, it's too much for the brain to process over a long period of time. Don't let the cost get you. I got one and it was around $3,500. Cheap ones won't work. I find that a single Sudafed or Advil help on days of stuffiness. Most days I just let it run its course and it goes away. Much worse when I have a cold or allergies. Stay strong! MD sucks....lol
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.
Hi everyone. I've had Meniere's since 1992 when I was 39 years old. It caused years of episodes, vertigo and hours of regurgitation. I would literally crawl to the bathroom, because I couldn't walk. I was given diazepam to calm the vertigo, along with nausea medication and all to no avail. I had an episode while driving 60 miles an hour on Lake Shore Drive in Chicago. Nearly killed myself and other folks. Then I stopped using caffeine, lowered my sugar intake and went all low-sodium. I have not had an episode in over 12 years. I do have tinnitus - the ringing in my right ear, where I am now deaf. I wear bi-cross hearing aids. I have tried Lipo-Flavonoid - available at most pharmacies and at Target, etc and online. I did notice a decrease in the ringing. Rehab absolutely worked and I kept the pictures of the exercises on my inside cupboard doors for many years. Whenever I would begin to "feel" the onset of an episode I would begin the exercises. Retraining the brain. Hope this helps someone.
I'm 52 yr old male, MD started about 4 years ago. The first year was rough, had multiple vertigo episodes. Ringing in my right ear was very loud for about 6 months. I used a cream called Promethazine that I rubbed on my wrist and it would stop the nausea and help me sleep. I too changed my diet and most of it went away. I went gluten free and that helped a lot. I also watch my sugar intake of "fake" sugars. You need calories so I use real sugar or natural additives. I tried the stay off salt thing and felt like dying because I was scared to eat anything. I lost 40 lbs in about 3 months because labels scared me. Then one day I said the heck with that and ate a whole pizza and nothing happened. So for me, salt is not an issue. Actually, your body has to have salt to survive. I use a product called Real Salt. Caffeine does make me feel more tight in my head sometimes because it constricts the blood vessels. Haven't had a vertigo attack in 4 yrs, thank God. I am dizzy at some point during the day, but nothing too bad to affect my everyday life. If I'm feeling real tight in my head, it's usually allergies and I take some Sudafed or Advil and that helps. I try to stay active and keep the blood going. Your mental attitude is 100% crucial to live a normal life. You have to move everyday and get going. Hot showers help get my head clear in the mornings. Try to eat small meals throughout the day. If find eating too much at one setting is not good. I eat mostly healthy foods, organic when I can. STRESS is a killer! You have to learn not to take life so seriously. Stress makes my head feel full. I'm a believer in God and that helps me to calm down and know he is in control. I also get a little loopy when I don't get enough sleep. I find that staying on a routine as much as possible helps a lot. I had ringing in my right ear and a little still today. I finally lost hearing in that ear. I have five children and a wife at home and it was getting harder to hear them. So I got a hearing aid and it's been a game changer for me. It was expensive, $3,500 for one. But, it has helped me hear so much better! I don't have balance issues any more and it muffles the ringing so I don't even hear it anymore unless its really quiet, even then it's minimal. It's also help my sanity when in noisy rooms to be able to know where the sound is coming from. The ear doctor told me that they are seeing patients more and more that don't fix their hearing with aids having dementia later in life because they had one ear doing all the work for years and the brain just can't handle that forever. Doctors are great to help you diagnose your issue, but from what i've experienced you have to find a lifestyle that works for you. So for me....cut out stress, find a support group in a church, family, work....eat as healthy as you can and use real salt, but have some tea or ice cream every once in awhile if you can tolerate it. Try going gluten free or dairy free....don't eat anything out of a box or processed can food....stay away from high fructose corn syrup.... get a routine going.....walk, run, play.....laugh! Everyone has some type of aliment in their life, we are not alone, we were just the lucky ones to have MD! Hope this encourages whoever reads this that it does get better and if you do have bad days, it's not the end of the world and you are not going to die! Be strong, life is a gift.
I've had MD for about 4 years now, only had vertigo episodes for the first year. Just dizzy every now and then. I did finally lose about all my hearing out of my right ear that was attacked. It was becoming harder to hear and function. So I did break down and get a hearing aid. It has helped so much. They put a rubber filter on it and I don't hear any ringing when it's on. It has also helped my balance and being able to stay in a room with lots of noise. The ear tech also told me that they are seeing a high number of people who don't fix their ear with a hearing aid have dementia later in life. It's due to you making your brain have one ear do all the work, it's too much for the brain to process over a long period of time. Don't let the cost get you. I got one and it was around $3,500. Cheap ones won't work. I find that a single Sudafed or Advil help on days of stuffiness. Most days I just let it run its course and it goes away. Much worse when I have a cold or allergies. Stay strong! MD sucks....lol
I have a lot of experience with hearing aids. I find the best ones for me are the kind that sit behind your ear and use a skeleton ear mold. This keeps the ear canal mostly free so no more wet ears inside the ear canal, no more itiching, no more ear infections, no more hearing loud noises when you chew your food! I love them. It’s true that you will have to pay around $3,500 for a good quality one but the cheaper ones were no good for me.
I hope you are able to hang in there with the hearing aids. I was told the first week of use you will hear yourself speaking and it will sound odd; the next week your voice will sound more normal but other voices will sound odd and finally everything will sound more normal. The goal was to wear them for 2 weeks, 12 hours -14 hours a day. The audiologist was correct, after two weeks, I adjusted and liked them.
Resound hearing aids are going back. The hearing in R ear is gone & aids don’t help. I don’t see how it helps my brain if it doesn’t even improve my hearing.
The hearing in L ‘good’ ear has hyperacusis so the aid makes noise too loud.
The aid can’t overcome the loudest days of tinnitus. The options / hearing aids are not helpful.
The only thing I like is I can stream music into my ears but still can’t hear it in R.
If anyone happens to read this and has any suggestions as to seeing a different Dr such as neurologist or has been helped by acupuncture please lmk. Thanks.
Someone on this forum had suggested a compounding pharmacy. I haven’t looked into this drug but I have had other drugs made for me at that place. The dr does have to write a script. Surely they can look it up. Good luck 🍀
Yes, I have been on Betahistine now for approx. a year for bilateral Meniere's. I believe it has had some effectiveness, but as with everything we try for Meniere's, actual differences can be difficult to discern due to the fluctuating and episodic nature of Meniere's. But so far, so good.. I take a 16 mg capsule of Betahistine twice a day as prescribed for me by my ENT. I obtain it from a local compounding pharmacy. Given the drug's relatively benign side effect profile, I think it is worth a try. But as always, talk it over with your medical professionals. Good Luck!
I have a lot of experience with hearing aids. I find the best ones for me are the kind that sit behind your ear and use a skeleton ear mold. This keeps the ear canal mostly free so no more wet ears inside the ear canal, no more itiching, no more ear infections, no more hearing loud noises when you chew your food! I love them. It’s true that you will have to pay around $3,500 for a good quality one but the cheaper ones were no good for me.
....probably been discussed before but the high price of hearing aids ... why can't they be covered by Government/other plans? I am in Canada so not sure about U.S.A. ... but so many people through no fault of their own have medical issues.... our Ontario gov't pays for hospital stays etc. etc., but what about aids to help person/people with medical devices , considering some of the ways "all our taxes" are spent?
Have you talked with your ENT about Third window syndrome? I had the surgery in my left ear 2 years ago and it stopped the vertigo attacks but did not improve hearing loss. It is diagnosed with an MRI. This is a newly approved surgery and not all ENTs do it. My Dr specializes in Menieres and was excited that he could provide this for me when the MRI showed this condition.
I have had Menieres for 20 years right ear and 4 years left ear. I’m 77 and now my total hearing loss is severe. I just got new Phonak Lumity 7 hearing aids and I’m pleased so far.
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I hope you are able to hang in there with the hearing aids. I was told the first week of use you will hear yourself speaking and it will sound odd; the next week your voice will sound more normal but other voices will sound odd and finally everything will sound more normal. The goal was to wear them for 2 weeks, 12 hours -14 hours a day. The audiologist was correct, after two weeks, I adjusted and liked them.
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4 ReactionsI've had MD for about 4 years now, only had vertigo episodes for the first year. Just dizzy every now and then. I did finally lose about all my hearing out of my right ear that was attacked. It was becoming harder to hear and function. So I did break down and get a hearing aid. It has helped so much. They put a rubber filter on it and I don't hear any ringing when it's on. It has also helped my balance and being able to stay in a room with lots of noise. The ear tech also told me that they are seeing a high number of people who don't fix their ear with a hearing aid have dementia later in life. It's due to you making your brain have one ear do all the work, it's too much for the brain to process over a long period of time. Don't let the cost get you. I got one and it was around $3,500. Cheap ones won't work. I find that a single Sudafed or Advil help on days of stuffiness. Most days I just let it run its course and it goes away. Much worse when I have a cold or allergies. Stay strong! MD sucks....lol
It's not approved in the US
I'm 52 yr old male, MD started about 4 years ago. The first year was rough, had multiple vertigo episodes. Ringing in my right ear was very loud for about 6 months. I used a cream called Promethazine that I rubbed on my wrist and it would stop the nausea and help me sleep. I too changed my diet and most of it went away. I went gluten free and that helped a lot. I also watch my sugar intake of "fake" sugars. You need calories so I use real sugar or natural additives. I tried the stay off salt thing and felt like dying because I was scared to eat anything. I lost 40 lbs in about 3 months because labels scared me. Then one day I said the heck with that and ate a whole pizza and nothing happened. So for me, salt is not an issue. Actually, your body has to have salt to survive. I use a product called Real Salt. Caffeine does make me feel more tight in my head sometimes because it constricts the blood vessels. Haven't had a vertigo attack in 4 yrs, thank God. I am dizzy at some point during the day, but nothing too bad to affect my everyday life. If I'm feeling real tight in my head, it's usually allergies and I take some Sudafed or Advil and that helps. I try to stay active and keep the blood going. Your mental attitude is 100% crucial to live a normal life. You have to move everyday and get going. Hot showers help get my head clear in the mornings. Try to eat small meals throughout the day. If find eating too much at one setting is not good. I eat mostly healthy foods, organic when I can. STRESS is a killer! You have to learn not to take life so seriously. Stress makes my head feel full. I'm a believer in God and that helps me to calm down and know he is in control. I also get a little loopy when I don't get enough sleep. I find that staying on a routine as much as possible helps a lot. I had ringing in my right ear and a little still today. I finally lost hearing in that ear. I have five children and a wife at home and it was getting harder to hear them. So I got a hearing aid and it's been a game changer for me. It was expensive, $3,500 for one. But, it has helped me hear so much better! I don't have balance issues any more and it muffles the ringing so I don't even hear it anymore unless its really quiet, even then it's minimal. It's also help my sanity when in noisy rooms to be able to know where the sound is coming from. The ear doctor told me that they are seeing patients more and more that don't fix their hearing with aids having dementia later in life because they had one ear doing all the work for years and the brain just can't handle that forever. Doctors are great to help you diagnose your issue, but from what i've experienced you have to find a lifestyle that works for you. So for me....cut out stress, find a support group in a church, family, work....eat as healthy as you can and use real salt, but have some tea or ice cream every once in awhile if you can tolerate it. Try going gluten free or dairy free....don't eat anything out of a box or processed can food....stay away from high fructose corn syrup.... get a routine going.....walk, run, play.....laugh! Everyone has some type of aliment in their life, we are not alone, we were just the lucky ones to have MD! Hope this encourages whoever reads this that it does get better and if you do have bad days, it's not the end of the world and you are not going to die! Be strong, life is a gift.
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Like -
Helpful -
Hug
7 ReactionsI have a lot of experience with hearing aids. I find the best ones for me are the kind that sit behind your ear and use a skeleton ear mold. This keeps the ear canal mostly free so no more wet ears inside the ear canal, no more itiching, no more ear infections, no more hearing loud noises when you chew your food! I love them. It’s true that you will have to pay around $3,500 for a good quality one but the cheaper ones were no good for me.
-
Like -
Helpful -
Hug
2 ReactionsResound hearing aids are going back. The hearing in R ear is gone & aids don’t help. I don’t see how it helps my brain if it doesn’t even improve my hearing.
The hearing in L ‘good’ ear has hyperacusis so the aid makes noise too loud.
The aid can’t overcome the loudest days of tinnitus. The options / hearing aids are not helpful.
The only thing I like is I can stream music into my ears but still can’t hear it in R.
If anyone happens to read this and has any suggestions as to seeing a different Dr such as neurologist or has been helped by acupuncture please lmk. Thanks.
Someone on this forum had suggested a compounding pharmacy. I haven’t looked into this drug but I have had other drugs made for me at that place. The dr does have to write a script. Surely they can look it up. Good luck 🍀
Yes, I have been on Betahistine now for approx. a year for bilateral Meniere's. I believe it has had some effectiveness, but as with everything we try for Meniere's, actual differences can be difficult to discern due to the fluctuating and episodic nature of Meniere's. But so far, so good.. I take a 16 mg capsule of Betahistine twice a day as prescribed for me by my ENT. I obtain it from a local compounding pharmacy. Given the drug's relatively benign side effect profile, I think it is worth a try. But as always, talk it over with your medical professionals. Good Luck!
-
Like -
Helpful -
Hug
1 Reaction....probably been discussed before but the high price of hearing aids ... why can't they be covered by Government/other plans? I am in Canada so not sure about U.S.A. ... but so many people through no fault of their own have medical issues.... our Ontario gov't pays for hospital stays etc. etc., but what about aids to help person/people with medical devices , considering some of the ways "all our taxes" are spent?
Have you talked with your ENT about Third window syndrome? I had the surgery in my left ear 2 years ago and it stopped the vertigo attacks but did not improve hearing loss. It is diagnosed with an MRI. This is a newly approved surgery and not all ENTs do it. My Dr specializes in Menieres and was excited that he could provide this for me when the MRI showed this condition.
I have had Menieres for 20 years right ear and 4 years left ear. I’m 77 and now my total hearing loss is severe. I just got new Phonak Lumity 7 hearing aids and I’m pleased so far.