Meniere's Disease

Posted by morninglory @morninglory, May 13, 2018

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

Liked by annekat

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!

Liked by Lisa Lucier

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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.

Liked by Lisa Lucier

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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.

Liked by Lisa Lucier

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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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@joyces

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!

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Although initially after having gone bilateral with Meniere's the problem was all hearing, Christmas Day I had the "gift" of the first true vomiting crisis. Oh joy! It was intermittent until mid-March, when crises really began to move in.

First, I was diagnosed initially by an ENT, which doesn't mean much because there's a diagnosis code for Meniere's that allows the ENT to get paid, whether or not it's actually what's wrong. Again, 80% of those diagnosed with Meniere's don't actually have it–and, further, it may not even be a single disease but a collection of similar diseases. I was formally diagnosed by a neurotologist, Dr. F. Owen Black, back during my mid 40s over 30 years ago. At the time, Dr. Black was the foremost diagnostician for inner ear disease, had all the "fun" rides in the vestibular lab in Portland, OR to diagnose as closely as possible. He also worked with NASA, testing all astronauts before and after they flew, looking for any changes in balance function following extended weightlessness.

Although the first thing you're told is to avoid salt, that may or may not help. Worse, if you live on a strict low-salt diet at some point you'll be exposed to "regular" food. If you are sensitive to salt, that will ensure that you'll have a crisis. It's better to live on a diet where salt is somewhat restricted but not nearly eliminated.

Most Meniere's sufferers have triggers. Keep a diary and note even tiny changes from whatever is normal for you, coloring each day to indicate the amount of Meniere's symptoms you had. This should help you learn what your trigger(s) is/are and figure out a way to deal with it. For me, it's definitely one single trigger: abnormally low hormones levels caused by bad genes and a ruptured appendix at age 8. Although I had had isolated crises earlier in my life (20s and 30s) when I wasn't taking birth control pills for a brief time, my problems became acute when I was told to stop taking the pill in my mid 40s. I went through four years of absolute hell, crises as often as three times a week, while my primary doc and I sought a form of HRT that would be both sufficient and safe for someone my age at the time. Once we found that, I had no more crises and began daily VRT to learn to move about comfortably, normally. The remission lasted until a year ago, and I was able to lead an unusually active life, even though I'm now 77.

Now, I'm finding it far more difficult to live with both the hearing loss on both sides as well as balance loss on both sides. I also went through some weeks of crises while trying to find a doc willing to prescribe adequate HRT. I'm now on the second of two "temporary" prescriptions, and will have to do some training of my new OB/Gyn, who not only knows nothing about Meniere's but zip about HRT! I'm not afraid of HRT because I researched the correct balance of estrogen vs. progesterone, which does not necessarily cause cancer. I definitely do not want to spend the last years of my life with a barf bag at my side at all times! I may be old, but I don't act like it! Two weeks ago, following some really bad crises, I determined that I can't drive a distance any where until I get this damned disease under control. Now that I'm on at least a temporary program of HRT, my immediate goal is to be well enough and confident enough to do my usual late May/early June placement of temperature monitors in a wild little river on the north coast two hours away. To reach the top two locations means hiking over three miles along a ruined RR track, wading across the river, and climbing up above a waterfall. So, this is a firm goal, something that I do every year: place monitors, check them during late summer, and remove them in early September.

I'm also interested in learning about anyone certified to teach VRT in the Portland, OR area.

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