Meniere's Disease
- Thread starter Teri
- Start date
Member
I change my perspective. It's helped me survive the madness that is my life! LOL This goes way way way back. Back to my childhood. I know that sounds cliche, but my life story is nuts. Should be on Oprah. Or Springer! HA!
@Teri , no it is not. Doc said there are some high end studies going on in US, UK and Japan.... in many countries. It is the inner ear studying in many cases and some do specialise in MD. That is a great thing.
I do google searches every now and then about the studies. I found this.
http://www.sciencedaily.com/releases/2013/12/131206163057.htm
it´s from the last year but still.
And from 2003 there is one study from Finland. interesting.
http://herkules.oulu.fi/isbn9514271130/isbn9514271130.pdf
Oh... i forgot the "MD burns" -thing. This was briefly discussed with the ENT this week. Although there are no clear patterns for one´s disease it seems that for the most of the sufferers the disease usually starts more or less aggressively and might then calm down to a certain level, or then not. Again, MD is different for every sufferer. The most troubling symptom for the "masses" seems to be the vertigo attacks and balance problems.
It´s fantastic that there is that gentamycin treatment to control the vertigo attacks.
For an example: i havent had a single attack in 7 months. Before that i had about dozen of them within 10 months.
So... my MD might have settled to a calm phase but who knows. Or then the water pills and betaserc are working with my do-not-stress-so-much test.
Docs message was simple: life as usual.
I do google searches every now and then about the studies. I found this.
http://www.sciencedaily.com/releases/2013/12/131206163057.htm
it´s from the last year but still.
And from 2003 there is one study from Finland. interesting.
http://herkules.oulu.fi/isbn9514271130/isbn9514271130.pdf
Oh... i forgot the "MD burns" -thing. This was briefly discussed with the ENT this week. Although there are no clear patterns for one´s disease it seems that for the most of the sufferers the disease usually starts more or less aggressively and might then calm down to a certain level, or then not. Again, MD is different for every sufferer. The most troubling symptom for the "masses" seems to be the vertigo attacks and balance problems.
It´s fantastic that there is that gentamycin treatment to control the vertigo attacks.
For an example: i havent had a single attack in 7 months. Before that i had about dozen of them within 10 months.
So... my MD might have settled to a calm phase but who knows. Or then the water pills and betaserc are working with my do-not-stress-so-much test.
Docs message was simple: life as usual.
@MichaelM
I am so thankful that you do not have ALL the symptoms at this time. You haven't mentioned the ear pressure or fullness feeling.....so I am hoping that has calmed down for you as well. Also, I am happy you are getting enough sleep. I read so many posts of folks with loud T not sleeping which makes the anxiety and depression worse.
We will just keep hoping Michel.
I am so thankful that you do not have ALL the symptoms at this time. You haven't mentioned the ear pressure or fullness feeling.....so I am hoping that has calmed down for you as well. Also, I am happy you are getting enough sleep. I read so many posts of folks with loud T not sleeping which makes the anxiety and depression worse.
We will just keep hoping Michel.
@Teri,
thank you for your support again. The last 2 weeks have been relatively good. Over the last months, since July or so, i have been noticing a some sort of a pattern in my "feelings". 2-3 weeks OK and 2-3 weeks Hell. I keep record of these in my email´s calendar. I recommend keeping data for everyone. It helps a bit when having those weeks in hell and agony since you can see that you were having OK-time a few weeks before.
Sleeping has never been a problem for me. Not with my previous mild T or with this MD. As i have mentioned many times it is the fatigue that gives me problems....exhaustion. Ear pain, ear pressure, hell of a T, hearing loss, balance issues, brainfog... familiar feelings for MD-folks. Seems to me i can have them all at the same time during those hellish weeks.
I hope we all are doing good.
thank you for your support again. The last 2 weeks have been relatively good. Over the last months, since July or so, i have been noticing a some sort of a pattern in my "feelings". 2-3 weeks OK and 2-3 weeks Hell. I keep record of these in my email´s calendar. I recommend keeping data for everyone. It helps a bit when having those weeks in hell and agony since you can see that you were having OK-time a few weeks before.
Sleeping has never been a problem for me. Not with my previous mild T or with this MD. As i have mentioned many times it is the fatigue that gives me problems....exhaustion. Ear pain, ear pressure, hell of a T, hearing loss, balance issues, brainfog... familiar feelings for MD-folks. Seems to me i can have them all at the same time during those hellish weeks.
I hope we all are doing good.
3 weeks now feeling "normal". not without symptoms but this is not suffering. Record for the whole year.... So far i have had only 2 good weeks in a row every now and then.
can not help thinking when the bad phase starts again but i try not to think about it too much.
Blood tests show normal, too. Meeting a new psychologist this month.
can not help thinking when the bad phase starts again but i try not to think about it too much.
Blood tests show normal, too. Meeting a new psychologist this month.
I am confused there is so many symptoms of illness like this. I can't tell difference with, can someone help please.
ETD
TMJ
Tinnitus
MD
Anxiety and depression with tinnitus.
From personal reviews not online stuff.
ETD
TMJ
Tinnitus
MD
Anxiety and depression with tinnitus.
From personal reviews not online stuff.
@Lisa Robinson , what do you want to know?
they way i see it there are many possible causes for tinnitus. Every T is not the same, no matter what people say i am not going to believe it.
Meniere´s is a sort of a collection of almost every single ear problem there is. Tinnitus, ear pain, aural fullness, balance issues, vertigo attacks, nausea, hearing loss and perhaps some others.
All these can be on-mode at the same time or some of them or just one of them.
I tend to have "seasons" when they all are on and then seasons when there is only T making my life somewhat interesting. See, i try to avoid the word suffering here.
all usually fluctuating a lot and like in my case i have no idea what the next day is going to bring.
MRI shows nothing in MD and the eustachian tubes are OK. It´s the inner ear making one´s life a bit "funny".
with MD tinnitus is just one of the symptoms and usually not the worst one. my Meniere´s makes it my worst problem. Usually the worst seems to be the vertigo attacks and balance problems. MD is an inner ear disorder that cannot be cured. Hardly any meds exists so we need to deal with my favourite thing the CWI = Cope with It.
I believe some T cases can be fixed if reacted quickly. Like with TMJ and teeth/occlusion problems or in some acoustic trauma cases or muscle tensions problems in the neck/shoulder area.
Just my ideas these ones and i am no doctor.
All in all it seems that the T it is not in the ear but in the brains. ENT told me something like "should we remove your inner ear complety (and it is possible, yes) you would probably still have the T."
Surgeries can bring help for those MD-folks suffering from vertigo attacks and balance problems on a daily basis. Some do get vertigo attack many times per week and some, like myself, couple of times per year. Some once in a lifetime, or everything between these.
BTW: i tried to search for a video of violent vertigo attacks. Couldnt find any. i might shoot one myself just to show people what it is like.
they way i see it there are many possible causes for tinnitus. Every T is not the same, no matter what people say i am not going to believe it.
Meniere´s is a sort of a collection of almost every single ear problem there is. Tinnitus, ear pain, aural fullness, balance issues, vertigo attacks, nausea, hearing loss and perhaps some others.
All these can be on-mode at the same time or some of them or just one of them.
I tend to have "seasons" when they all are on and then seasons when there is only T making my life somewhat interesting. See, i try to avoid the word suffering here.
all usually fluctuating a lot and like in my case i have no idea what the next day is going to bring.
MRI shows nothing in MD and the eustachian tubes are OK. It´s the inner ear making one´s life a bit "funny".
with MD tinnitus is just one of the symptoms and usually not the worst one. my Meniere´s makes it my worst problem. Usually the worst seems to be the vertigo attacks and balance problems. MD is an inner ear disorder that cannot be cured. Hardly any meds exists so we need to deal with my favourite thing the CWI = Cope with It.
I believe some T cases can be fixed if reacted quickly. Like with TMJ and teeth/occlusion problems or in some acoustic trauma cases or muscle tensions problems in the neck/shoulder area.
Just my ideas these ones and i am no doctor.
All in all it seems that the T it is not in the ear but in the brains. ENT told me something like "should we remove your inner ear complety (and it is possible, yes) you would probably still have the T."
Surgeries can bring help for those MD-folks suffering from vertigo attacks and balance problems on a daily basis. Some do get vertigo attack many times per week and some, like myself, couple of times per year. Some once in a lifetime, or everything between these.
BTW: i tried to search for a video of violent vertigo attacks. Couldnt find any. i might shoot one myself just to show people what it is like.
Nope. VN and MD are 2 different things.
VN is some sort of an infection with only one symptom; vertigo attacks.
MD gives you the whole bunch like i wrote in my previous message. MD is Something Else indeed.
Collector´s choice... you can get most of the ear problems with just one diagnose.
Thank you for clarifying that
just my symptoms got worse once my tonsils were swollen, apparently I have dull looking ears inside and now some slight fevers on and off at night. Been two weeks and meds have helped but doctor reckons could take weeks more. He did also mention Urti as well.
I have tinnitus for 13 months and didn't have anything else just ringing. Now it's infections and head pressure and some clumsyness that's getting me down. Can't even sleep where these sudden hot fever come on. I was fine till I came to Australia. T also goes up and down.
How´s the stress level? One thing everyone keeps saying is "get your stress level down".
there is a good point in it.
Streas level is not great. Can't even eat because having a fast blood test tomorrow. Wish it would all stop I hate Tinnitus.
Lisa, I had T come on very loud. There were times when it could not be masked. Now, I have had 100 days of low T.
I lowered my stress greatly, I cut way back on salt, don't drink as much coffee, and cut out alcohol entirely.
As Michael stated, every person is different.
I lowered my stress greatly, I cut way back on salt, don't drink as much coffee, and cut out alcohol entirely.
As Michael stated, every person is different.
easy to relate to that one @Lisa Robinson : i hate MD. The thing is we just need to keep on going no matter what. That has been the hardest part for me: living the life like used to. Most of the time i feel tired and during the bad weeks i am absolutely exhausted.
@Teri has a good point. Lower salt, no caffeine no alcohol, sleep, exercise and stay off from these forums at the same time. Try it for a month or so to see if it helps. Find a good ENT, too.
I havent really changed anything in my life: i drink alcohol probably too much & coffee, eat whatever. I tried those "lower it" things last spring but it wasnt for me. This MD fluctuates a lot for me and nothing seems to affect it except stress and psychological pressure i had at work. Helped a lot when i quit. Now i work part time wishing to find a new job.
I was at the point where i had chest pain, some sort of panicking too, and i heard noises (hallucinations. Must be first time i am saying this out loud to the people). With MD i have had my closest visit to a mental breakdown. The worst phase lasted more than 6 months for me, 24/7.... i got no help and no sympathy except from nice folks here and from a nurse i visited about 12 times. I think it´s OK to say i have never suffered so much than during this year with this MD-Beast.
Now it seems i am finally coming back to life again but let´s see... MD seems to have a few tricks coming all the time. Writing this kinda positive saying here and at the same time i know i am going to that dark tunnel soon..... I know it. cant help thinking about it.
@Teri has a good point. Lower salt, no caffeine no alcohol, sleep, exercise and stay off from these forums at the same time. Try it for a month or so to see if it helps. Find a good ENT, too.
I havent really changed anything in my life: i drink alcohol probably too much & coffee, eat whatever. I tried those "lower it" things last spring but it wasnt for me. This MD fluctuates a lot for me and nothing seems to affect it except stress and psychological pressure i had at work. Helped a lot when i quit. Now i work part time wishing to find a new job.
I was at the point where i had chest pain, some sort of panicking too, and i heard noises (hallucinations. Must be first time i am saying this out loud to the people). With MD i have had my closest visit to a mental breakdown. The worst phase lasted more than 6 months for me, 24/7.... i got no help and no sympathy except from nice folks here and from a nurse i visited about 12 times. I think it´s OK to say i have never suffered so much than during this year with this MD-Beast.
Now it seems i am finally coming back to life again but let´s see... MD seems to have a few tricks coming all the time. Writing this kinda positive saying here and at the same time i know i am going to that dark tunnel soon..... I know it. cant help thinking about it.
It is good that you can "vent out your frustrations" here Michael.
The not knowing when the storm is coming, has been difficult for me too. I have family members who struggle with T varying from severe to not so severe. My dad has had bad vertigo attacks that have lasted quite a long spell. I am almost convinced that it is somehow genetic.
The not knowing when the storm is coming, has been difficult for me too. I have family members who struggle with T varying from severe to not so severe. My dad has had bad vertigo attacks that have lasted quite a long spell. I am almost convinced that it is somehow genetic.
I think MD and these ear disorders are genetic for some of us. My mother has problems with her ear, her mother had too. My grandma might have suffered from VN. Now that i think of it she mentioned the feeling of rotation/vertigo many times and she had to lie down and wait for it to stop.
The good part with these internet forums is that one can really say the true feelings. I havent told that auditory hallucination thing to anyone but the doctors here.
The good part with these internet forums is that one can really say the true feelings. I havent told that auditory hallucination thing to anyone but the doctors here.
@Teri
Thank you.
Whenever I see a clinical trial for Meniere's disease, I always silently ask "to which one?".
A classic Meniere's patient, as they describe, has tent shaped hearing loss on the audiometry and spinning vertigo attacks that surface the other symptoms at the time as well.
Now myself, I have T, H, constant dizziness a tent-shape hearing loss (even though the tent is quite remarkably bad-shaped as I am deaf after 4kHz) in the affected ear, but never ever had a vertigo attack... And they again classify me as a Meniere's patient.
A more interesting fact from Dr. Timothy Hain's dizzinessandbalance clinic: What is revealed from the autopsy tells that hydrops (which is the current theory on why Meniere's happens) is about 1 in 10 in the public however Meniere's patients are way less in frequency. But all these Meniere's patients had hydrops. So Meniere's means hydrops but not the other way around.
Personally I do not think I have Meniere's, at least not a wild version of it... My symptoms enflamed after I had a TTI of dextametazone (That's what I have been told at least, I have been suspecting all this time that the injection was actually confused with a destructive treatment, e.g. Gentamicin.)
These make me quite pessimistic about a possible cure in the near future. How can one find a cure for something that we do not have a clear understanding of?
Thank you.
Whenever I see a clinical trial for Meniere's disease, I always silently ask "to which one?".
A classic Meniere's patient, as they describe, has tent shaped hearing loss on the audiometry and spinning vertigo attacks that surface the other symptoms at the time as well.
Now myself, I have T, H, constant dizziness a tent-shape hearing loss (even though the tent is quite remarkably bad-shaped as I am deaf after 4kHz) in the affected ear, but never ever had a vertigo attack... And they again classify me as a Meniere's patient.
A more interesting fact from Dr. Timothy Hain's dizzinessandbalance clinic: What is revealed from the autopsy tells that hydrops (which is the current theory on why Meniere's happens) is about 1 in 10 in the public however Meniere's patients are way less in frequency. But all these Meniere's patients had hydrops. So Meniere's means hydrops but not the other way around.
Personally I do not think I have Meniere's, at least not a wild version of it... My symptoms enflamed after I had a TTI of dextametazone (That's what I have been told at least, I have been suspecting all this time that the injection was actually confused with a destructive treatment, e.g. Gentamicin.)
These make me quite pessimistic about a possible cure in the near future. How can one find a cure for something that we do not have a clear understanding of?
Hi there, friend. Yes indeed i have Meniere´s.@MichaelM
Hi Michael. I gathered that you also have MD with lots of symptoms on the tray. How did they diagnose you? I have T, Hyperacusis, dizziness (not vertigo attacks), and hearing loss.
In my experience and reading so far, I think MD is the wastebasket diagnosis of ENTs
How did they diagnosed me? With lots of talking during some 2 years... i visited 2 different doctors during that time.
Before the MD diagnose i had all the symptoms but vertigo attacks. When vertigos finally hit me with full force the diagnose was clear.
Before that i have had T, mild H, dizzines, brainfog, hearing loss in my sick ear, ear pressure, ear pain... that wasnt enough for the MD diagnose. I had had about a dozen of mild dizziness attacks during which i was still able to walk. They usually lasted 10-12 hours.
Attached is my audiogram.
I have head stories that some folks have got MD diagnose with relativily easy symptoms. It must depend on a doctor studying the patient. The way i see it MD "needs" vertigo attacks, hearing loss, T, and ear pressure/pain. that´s MD.
without vertigos it´s possible MD, i think.
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