Meniere's Disease

Posted by morninglory @morninglory, May 13, 2018

Has anyone with Meniere's Disease been prescribed the compound drug Betahistine?

@kimhal

He had another attack on thurs fri and sat he wanyed me to take him to hosp as he was so weak and nauseous and spinning. They gave him gravol iv and also glucose iv and he felt a bit better after that as he was not spinning and nauseous. The neurologist called and said that she didnt see any neurological disorders atbthis time. Found it real intereating that my husbands dad went deaf in one ear at 15 kelly my hubby went deaf in one ear at 4 and his neice was deaf in one ear at birth. The only difference is that my hubby is now losing hearing in his rt ear as well since his episode back in dec. We have a hearing test at a local hearing aide office comming up next week just to see if that would help him at all. This is absolutely horrible watching him like this. Yesterday he was able to walk without losing his balance. It would be nice to find something thatt could help him alleviate some of the pressure and ringing .

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@kimhal. This Menieres disease is so puzzling. A couple of rather dumb questions: does your husband have any kind of warning that an attack is coming? In my case, had noises in my ear – sounded like hamburgers frying. No one talks about antivert (meclizine). Is it no longer used or recommended for motion sickness and dizziness? Also, just in case this is allergy-related, have you considered keeping a food/medicine diary? My Menieres was diagnosed as caused by an unknown allergy, but of course there are many different causes. My sympathy to your husband – how well I remember how horrible those attacks were!!

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The two things that can be done to alleviate Meniere's are VRT and keeping a diary. VRT is vestibular rehab, and the main purpose is to train yourself to use proprioception instead of vision to know where you are in relation to the world around you. First step is to stand with your feet fairly close together and close your eyes. When you can stand without wobbling, progress to walking with eyes closed (or in the dark). While doing this, pay attention to what your feet tell you–that's the basis of proprioception. Done every day for 15 minutes, you'll soon see an improvement. From walking in the dark inside, start walking outside in the dark or in very low light situations. While you're walking, check the ground ahead for obstacles and then walk looking out at the world instead of the surface in front of you. A diary should indicate the kind of day you've had (good, so-so, bad) and list EVERYTHING you do/eat/contact that's out of the ordinary for you. Over time, you'll see a pattern that indicates the thing or things that trigger really bad days. Triggers are different for all of us! Some of us have one main trigger, while others have more than one. The only person who can do these two important things is…YOU! You hold your ability to live normally in your own hands!

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Excellent advice.

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Only you yourself have a "feeling" inside (perhaps) that something (food or contact) is just "not right". Myself, just prior to one of my three bad episodes, I had eaten a frozen food "meal" that I had bought at the Dollar Tree. In hindsight, I wonder WHY certain food items sporadically appear at such a low price at such a store. I personally never ever eat "reject" food items like that again! Also, many years before my Meniere's disease hearing loss and extended vomiting/lack of being able to function episodes, I had another type of serious reaction by my body to caffeine: Panic attacks. I could not even tolerate the small amount of caffeine in Excedrin. So for a long time I stopped caffeine and my body stopped the panic attacks. So it made sense to me to QUIT for good the caffeine in my life. For ME, caffeine has never done me a bit of good. And I used to drink a LOT of tea. I don't even drink herbal tea anymore. Not even decaffeinated coffee. NONE of it. I am prepared for another attack by keeping vomit bags and anti nausea medicine in my glove compartment and purse, but since stopping all caffiene and all sodas (diet or regular) (because I used to drink about 3 cans a day!) I have not had another recurrence. I agree with most others that the triggers are different for all of us. WE have to be our own detectives on this. Keep a detailed diary!

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@trishanna

@kimhal. This Menieres disease is so puzzling. A couple of rather dumb questions: does your husband have any kind of warning that an attack is coming? In my case, had noises in my ear – sounded like hamburgers frying. No one talks about antivert (meclizine). Is it no longer used or recommended for motion sickness and dizziness? Also, just in case this is allergy-related, have you considered keeping a food/medicine diary? My Menieres was diagnosed as caused by an unknown allergy, but of course there are many different causes. My sympathy to your husband – how well I remember how horrible those attacks were!!

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Meclizine and HCTZ saved me.
Ray

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@raym

Meclizine and HCTZ saved me.
Ray

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Hi, @raym – thanks for sharing what helped manage your Meniere's disease.

More information on the meclizine you mentioned is available on this Mayo Clinic page https://www.mayoclinic.org/drugs-supplements/meclizine-oral-route/description/drg-20075849. Information on the hydrochlorothiazide (HCTZ) is also available https://www.mayoclinic.org/drugs-supplements/hydrochlorothiazide-oral-route/description/drg-20071841.

Will you share what symptoms you were experiencing before you started on these medications, raym, and how they have helped? Have you experienced any side effects with them?

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I haven't had a serious episode of vertigo, inability to stand or walk for a number of years. The last episode I had was after a breakfast in a restaurant that included salty bacon and had to have someone take me home. I watch my salt intake continuously and sometimes if I feel like a lightheadedness or nausea coming on, I will take a HCTZ and meclizine. When I first had episodes it would take a week or more to get completely over it. I very religiously minimize my salt intake.

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Ray M's post highlights how differently Meniere's affects those of us "chosen" to have it! While low-salt diets have many benefits, only a small percentage of Menierians are sensitive to salt and see improvement by limiting salt intake. It depends upon individual triggers, and salt is only one of several. For me, since my trigger is abnormally low hormone levels, limiting my salt intake did zero for combatting Meniere's–you need to have adequate hormone levels in order for salt to affect your "ability" to retain water, which is why pregnant women with naturally high hormone levels retain water so easily. Again, the first thing all of us need to do is keep a diary showing the kind of day we experienced contrasted with anything (and I do mean anything) out of the ordinary. Over time, you'll find a pattern of activities, food, environmental effects, etc. that points to the thing or things that are triggers for your bad days. Some can be eliminated, while others, like weather or stress for example, require coping skills so that you can deal with them.

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@raym

I haven't had a serious episode of vertigo, inability to stand or walk for a number of years. The last episode I had was after a breakfast in a restaurant that included salty bacon and had to have someone take me home. I watch my salt intake continuously and sometimes if I feel like a lightheadedness or nausea coming on, I will take a HCTZ and meclizine. When I first had episodes it would take a week or more to get completely over it. I very religiously minimize my salt intake.

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@raym . Meclizine(antivert) really helped me initially. I understand there are some negative side effects with this medication, but if it works, it should be considered. A low-salt diet ultimately reduced my episodes of dizziness/nausea, but the salt reduction is not a cure. It's simply an expedient way to reduce symptoms. I limited or eliminated three suspected causes: oats, corn and wheat and I believe that helped. Tracking one's diet, like-style, etc., is an excellent way to find your triggers. Hope some day, an answer will be found, for I am left with hearing loss, tinnitus, ear discomfort, etc., some of which most assuredly are the result of Menieres.
.

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@joyces

Ray M's post highlights how differently Meniere's affects those of us "chosen" to have it! While low-salt diets have many benefits, only a small percentage of Menierians are sensitive to salt and see improvement by limiting salt intake. It depends upon individual triggers, and salt is only one of several. For me, since my trigger is abnormally low hormone levels, limiting my salt intake did zero for combatting Meniere's–you need to have adequate hormone levels in order for salt to affect your "ability" to retain water, which is why pregnant women with naturally high hormone levels retain water so easily. Again, the first thing all of us need to do is keep a diary showing the kind of day we experienced contrasted with anything (and I do mean anything) out of the ordinary. Over time, you'll find a pattern of activities, food, environmental effects, etc. that points to the thing or things that are triggers for your bad days. Some can be eliminated, while others, like weather or stress for example, require coping skills so that you can deal with them.

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I think you are correct in that salt is not the only thing that can cause water retention.In my case I never did consume much salt, but I did consume a lot of caffiene and diet soda. And in the case of diet soda, I had through the years noted that it caused me to retain fluid; My breasts would feel very full – as they did when I nursed my four children. Strange. Now that I have eliminated caffeine and all soda, I have not had another episode of Meniere's and I do not get that full feeliing in my breasts. I agree that we each have to find our own trigger(s) and it is not necessarily always salt.

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@colleenyoung

Hi @morninglory, thanks for starting this discussion specific to Meniere's Disease. I'm tagging @pedie @trishanna and @huoda to join the conversation.

MorningGlory, are you currently taking Betahistine? Is dizziness or vertigo the symptom you experience the most with Meniere's?

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I have Meniere's Disease. No doctor has ever mentioned Betahistine to me. In my case a very low sodium diet has been the most effective. I also take a diuretic. It takes several weeks of following lo so to have it make a difference.

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Again, although every Menierian is told to adopt a lo so diet, only some benefit from it. This is not to say that all of us would benefit from reducing our salt intake, as our food is formulated to provide far more sodium than we require, which can lead to high blood pressure and its deadly silent partner, kidney disease. Still, only some with Meniere's will see improvement with a lo so diet. Better to learn what your individual triggers are! As for excess fluid in our bodies, several years ago many of us tried exercise–i.e., working up a sweat, as a way to lose fluid. Whether we had an improved self image due to having done normal things in spite of Meniere's or whether sweating works wasn't determined, but all of us felt better afterwards.

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