Hi everyone.My doc has diagnosed possible MD.My symptoms are fullness in right ear,dizziness&vomiting ,recovery period between 3 to 8 hrs.The episodes used to occur several days apart.(min 3days, max 15 days).i saw consultant who raised dosage of Betahistine from8mg x3daily,to 16 mg x3daily.I had 5 days of headaches before having 3 bad episodes in 6 days.this convinced me that the meds were making my condition worse.I stopped taking the meds.The headaches continued for 6more days then gradually stopped.My next episode was 21 days later,only slight dizziness&vomiting,It seems that the longer I am off medication,the better I feel.I still have mild fullness in right ear&slight tinnitus.has anyone had similar reaction to Betahistine?
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Meniere's Disease
- Thread starter Teri
- Start date
Member@Dutchman welcome to the thread. I have never been on betahistine. Although, it is my understanding with MD, every individual is different. What works for some folks, does not work for others. Salt can be poison for this condition. I have tapered back from salt, and it has seemed to help me. Keep us posted on how you are doing.
I didn't welcome you when I first saw your post, @Dutchman. My apologies. I'm having a go lately. I'm on day 4 of feeling like dog poo. Just a low-level crappy feeling (relatively speaking). Enough to zap my energy, have problems concentrating, very irritable. I feel like I've gone on a merry-go-round... not vertigo, but that icky feeling that lingers after getting off a rollercoaster. Well for me anyway, that icky feeling lasts all day after a go on a coaster or other ride. (which I haven't done in 2 years, and vowed I'd never go again, before Meniere's.)
'cept this icky feeling has lasted 4 days.
'cept this icky feeling has lasted 4 days.
Sue, do you think weather might be a contributing factor as well? Boy, I sure know when there is a front moving in. I was in Denver last weekend, and my ears were popping like crazy from the altitude and the bad weather (including tornadoes).
No. I went to a Sox game without ear plugs. Did fine until the woman next to my so. Was talking VERY loud and high pitched. Left with a headache.
I could be wrong about the cause though.
I could be wrong about the cause though.
Was told I had tinnitus so did the diet thatbthendoc gave me and tried all the remedies.m nothing worked.m researched and researched this mennieres bull. Seems there is actually no such thing. it's only a name that doctors give to a bunch of symptoms coming from the ear that they cannot find a reason for. So a hundred people could be told they have mennieres because they have symptoms that come under this category but every one of them could have a different cause for the symptoms. Just because you're told you have mennieres, don't give up trying to find a cause and a solution to get rid of it.
@Mad maggot that is exactly what the ENT told me. She said that Meniere's disease is a generic diagnosis. it is given when a physician cannot determine any cause.
How are you doing with your symptoms now? Have you determined what was causing the fluid in your inner ear?
How are you doing with your symptoms now? Have you determined what was causing the fluid in your inner ear?
Menieres is dx'ed through symptoms when other dx are ruled out. That doesn't mean it isn't a real dx. Ménière's can only be confirmed upon autopsy. Yes, some get mis-dx'ed.
@Mad maggot that is exactly what the ENT told me. She said that Meniere's disease is a generic diagnosis. it is given when a physician cannot determine any cause.
How are you doing with your symptoms now? Have you determined what was causing the fluid in your inner ear?[/QUOTE
I didn't have and never had fluid in my ear as far as any doctor has been able to tell. I certainly don't feel I have fluid in the ear. And I never accepted the mennieres idea but the doctor was never sure. My symptoms are all still there.
I believe my problem is not in the ear but from the brain. My T is probably not T at all from everything I'm reading about others. The noise in my ear creates jumping swinging vision exactly in time with the noise.this is a bigger problem for me than the noise itself. I'm still searching.
I feel bad for everyone here who is so stressed by their T. I see a lot of posts that sounded like me a few years ago. I used to pray I'd not wake in the morning. I couldn't even walk to the bathroom the spinning was so bad or cook toast for my kids! But I've learned to "act" and walk almost normally. People who haven't known me for long do not know I have this problem.
But if I can learn to live through this spinning and falling over etc then anyone can learn to live with stuff because I'm pretty much a big wimp. So everyone hang in there.
I had an ENT tell me I only had tinnitus. Doesn't make it true. Then I went to a highly specialized hospital in Boston (Mass Eye and Ear Infirmary). I trust what they say more than the ENT I saw. At MEEi, I saw a neurotologist and an otological. I also saw a neurologist at Newton-Wellesley. The neurotologist has much more specialized education than the ENT.
- Aug 21, 2014
- 5,049
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I personally think that a lot of what gets diagnosed as MD, is viral infiltration of the inner ear, specifically by herpes viruses of one kind or another (which are carried in some form by >80% of the adult population, closer to 95% if you count herpes zoster).
and someone carries this virus for 20 years? I don't buy it. I think in some cases, perhaps. I've seen (in a FB support group) that polled the folks and it was about the same percentage of people who have ever had a herpes outbreak AND has Meniere's is about the same percentage in the general population. ie, not much of a correlation.
That is interesting @Mad maggot
If you do not have fluid in your inner ear...then the MD diagnosis does not make sense to me. The dizziness could certainly be related to the T.
If you do not have fluid in your inner ear...then the MD diagnosis does not make sense to me. The dizziness could certainly be related to the T.
The herpes virus stays in your body your whole life. It can remain dormant for many years after the first outbreak and may manifest itself from time to time causing blisters and sores.
Nucleo, what of the ones who have NEVER had any herpes outbreak? There appears to be no more herpes sufferers in the Meniere's community than in general population. So, all of those non-Herpes folks -- what about them?
Teri, there's a difference between having fluid in the ears that is visible by the docs (like swimmers' ear) and what the fluid in the labyrinth is (closed system). You can't see the fluid that relates to Meniere's.
http://www.healthline.com/health/menieres-disease#Overview1
Teri, there's a difference between having fluid in the ears that is visible by the docs (like swimmers' ear) and what the fluid in the labyrinth is (closed system). You can't see the fluid that relates to Meniere's.
http://www.healthline.com/health/menieres-disease#Overview1
exactly. If a doc is LOOKING in your ear and says there's no fluid, he's talking about a different issue, totally unrelated to Meniere's. We don't have ear infections, fluid blockage, or anything else that can be seen on an otoscope.
Interesting. This is from dizziness and balance.com. There is much argument over menierres and its existence and what causes it.
Recently, the most generally accepted idea that Meniere's disease and endolymphatic hydrops are always associated has been questioned. Hydrops is not found in all persons with Meniere's disease, and hydrops is also commonly found (6%) on autopsy studies of persons who had no Meniere's type symptoms (Honrubia, 1999; Rauch et al, 2001). Because Meniere's disease occurs in roughly 0.2/100 persons, and Hydrops is found in 6/100 temporal bones, there is more than an order of magnitude more people with hydrops than Meniere's disease. Thus logically, there must be something more than simply hydrops involved in the origin of Meniere's disease
Explanations for Meniere's that depend on unilateral injury to an ear, such as a blockage of a "drainage pipe" in the ear, also seem hard to sustain in view of the known long-term studies that show that Meniere's becomes bilateral in roughly 50% of all people, after 15 years (Stahle et al, 1991).
Recently, the most generally accepted idea that Meniere's disease and endolymphatic hydrops are always associated has been questioned. Hydrops is not found in all persons with Meniere's disease, and hydrops is also commonly found (6%) on autopsy studies of persons who had no Meniere's type symptoms (Honrubia, 1999; Rauch et al, 2001). Because Meniere's disease occurs in roughly 0.2/100 persons, and Hydrops is found in 6/100 temporal bones, there is more than an order of magnitude more people with hydrops than Meniere's disease. Thus logically, there must be something more than simply hydrops involved in the origin of Meniere's disease
Explanations for Meniere's that depend on unilateral injury to an ear, such as a blockage of a "drainage pipe" in the ear, also seem hard to sustain in view of the known long-term studies that show that Meniere's becomes bilateral in roughly 50% of all people, after 15 years (Stahle et al, 1991).
Although the ear specialist used the term endolympatic hydrops and Meneires interchangeably, it is my understanding that endolympatic hydrops does not necessarily develop into Meneires Disease.
All I know is.....something is going on in my inner ear!
All I know is.....something is going on in my inner ear!
Well mine didn't. Just used the term Menieres. But I do hear that the often use interchangably.
- Aug 21, 2014
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Yes, you carry a herpes virus with you for life. Things like cold sores are recurrent outbreaks of the same underlaying infection. Anyone who has ever had a cold sore, or chicken pox, is permanently infected with an active virus which may go through periods of dormancy and activity.
There are at least two studies I am aware of which have demonstrated the presence of herpes viral RNA inside the inner ear of 100% of people with Meneire's (compare to significantly smaller percentages for normal controls). As this sort of testing can only be done post-mortem, both studies unfortunately have a small sample group, and this sample bias is a concern. There have also been a couple studies which point in the opposite direction.
It is interesting food for thought. My read is that ongoing viral problems, probably are responsible for a number of diverse pathologies which are treated as "auto-immune", even though the immune response in this case is to a foreign organism (and therefore not actually an auto-immune problem).
Completely anecdotally, my tinnitus usually goes bonkers in the day or so leading up to a cold sore, but this may have as much to do with generalized inflammation and immune activation, as anything else.
http://www.ncbi.nlm.nih.gov/pubmed/12972911
http://www.dizziness-and-balance.com/disorders/menieres/men_eti.html
Geez. I understand you carry herpes for life!! But you DONT carry it for life if you've never had it!! What about those people who have Menieres and you are saying it's not Menieres but it's a herpes virus??
- Aug 21, 2014
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It's some minority of people who aren't carrying any of these viruses, though many people never show any symptoms.
That said, no, I am not suggesting that everything which causes EH/MD is a herpes virus, or even necessarily a virus at all. I am suggesting that between HSV, CyCV, and any number of other viral vectors, a significant amount of MD diagnosis are probably explainable (or would be, if there was a reliable way to test for viral RNA in the inner ear without dissection).
Your text says that you think your MD was the result of an ear infection... do you know what kind of infection?
I don't think it was due to an ear infection. I was having hearing problems and got checked for an infection or perforated eardrum. I had neither.
I question your claim that it's a minority of people that don't carry the heroes virus. I believe it is pretty split down the middle. 50/50.
So, look at how many people have MD. You are saying that the majority have a virus. I think this is hugely inaccurate. While I do think some people who are dx'ed with MD actually don't have MD (because they have a virus instead), I don't think the opposite claim can be made.
I question your claim that it's a minority of people that don't carry the heroes virus. I believe it is pretty split down the middle. 50/50.
So, look at how many people have MD. You are saying that the majority have a virus. I think this is hugely inaccurate. While I do think some people who are dx'ed with MD actually don't have MD (because they have a virus instead), I don't think the opposite claim can be made.
Hydrops can be diagnosed without autopsy - an advanced version of the ECOG test where an electrode is placed through the ear drum. You have to have ear drops after to prevent infection. It requires great skill to interpret the results and I guess is probably not considered 100% by the entire ENT community. Its not something I would risk in my hearing ear!
The viral theory of MD is well established, not just one of the many herpes virus (they don't all present like pox or blisters) but other viruses too like CMV for example.
And as has been said there are other causes of the same symptoms such as holes in places they shouldn't be, or ETD, or autoimmune/thyroid probs, or malformation of the structures, or TMJ it goes on.
Frustratingly though nobody in the NHS seems interested to rule these out. All you get is 'you don't have a brain tumor so go home and deal with it'.
Serq I believe is likely a placebo, but we await a trial to properly determine its efficacy.
The viral theory of MD is well established, not just one of the many herpes virus (they don't all present like pox or blisters) but other viruses too like CMV for example.
And as has been said there are other causes of the same symptoms such as holes in places they shouldn't be, or ETD, or autoimmune/thyroid probs, or malformation of the structures, or TMJ it goes on.
Frustratingly though nobody in the NHS seems interested to rule these out. All you get is 'you don't have a brain tumor so go home and deal with it'.
Serq I believe is likely a placebo, but we await a trial to properly determine its efficacy.
It may not. But many many articles point to the term menierres as a term that covers any ear problem with certain symptoms and that it doesn't mean that menierres is a specific problem or disease. Just a name given to people when the doctors can't figure out what's wrong with them. It depends on the doctor you speak to. It's the same with fibromyalgia. Some doctors don't believe it exists. The people are obviously unwell but when doctors can't discover a cause they say you have fibromyalgia as a kind of fob off. A doctor I asked about it and said did they think my symptoms could be fibromyalgia said "oh that's a rubbish bin diagnosis when we can't figure out what to do with you." Her words, not mine.
I'm not saying menierres does or doesn't exist - I'm saying i won't accept it until I'm certain as I'm not prepared to accept that there is no cure or anything that can help. I've been told I possibly have menierres - not been given a definite diagnosis.
If you believe it exists and you believe you have it, I respect that. I'm sure you've researched just as much as anyone with these problems as we all want relief. We just come to different conclusions. But I may yet find more evidence and decide that I change my mind and believe it does exist. I hope that whatever it is or isn't you can find something to make your symptoms go away. I hope nothing I say here offends anyone.
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