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Meniere's Disease
- Thread starter Teri
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I am not sure, Michael. I wish there was a good forum for Meneires as there is for TT. I have yet to come across one. It would be nice to have some success stories and posters who have "walked through the dark tunnel" and lived to tell about it. Those types of folks always are so encouraging! Magpie posts here and has been very encouraging to me. He has MD and went through some very hard times with it but is now doing well.
It is interesting that you, posted that Michael. Why is there no forum for MD sufferers? Luckily, we have a spot here to post on a thread. I have found some Facebook groups and a couple of sites that Magpie gave me, but overall, there is no specific site for "MD talk" as you suggested.
Michael, I was reading up on some Meneires information and there seems to be some good, success stories from folks who have opted for some surgeries to combat the vertigo. Have you looked into that?
Michael, I was reading up on some Meneires information and there seems to be some good, success stories from folks who have opted for some surgeries to combat the vertigo. Have you looked into that?
Teri and MichaelM, (or anyone really)
If another Meniere's thread gets started, please tag me? Then I can watch the thread and get notifications.
If another Meniere's thread gets started, please tag me? Then I can watch the thread and get notifications.
@Teri @SueR
I have seen many facebook-groups for MD. I guess this disease is so little known and the sufferers have been, until this internet era, one there one here all over the world. 1 good group like TT is better than dozens of facebook-groups i think.
There are success stories, i have seen many. Vertigo can be treated and put to control for many of us but not for everybody, or so it seems. There are surgeries and gentamycin shots for vertigo. they seem to help many people.
http://www.dizziness-and-balance.com/treatment/ttg.html
Inner ear pressure surgery.
http://www.menieres.org.uk/information-and-support/treatment-and-management/surgery#endolymphatic
But: non of these is the cure for MD. There is no cure. Only some symptoms can be treated. There are risks as always with surgeries and i believe they dont help with 100% probability everytime.
for Tinnitus there´s nothing. And T is my main problem. If someone´s main problem is the vertigo attacks something can be done.... and it might actually help.
Then there´s books http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias=stripbooks&field-keywords=meniere&rh=n:283155,k:meniere
I have a few of those. If interested (someone in Finland) you can contact me for loaning.
I have seen many facebook-groups for MD. I guess this disease is so little known and the sufferers have been, until this internet era, one there one here all over the world. 1 good group like TT is better than dozens of facebook-groups i think.
There are success stories, i have seen many. Vertigo can be treated and put to control for many of us but not for everybody, or so it seems. There are surgeries and gentamycin shots for vertigo. they seem to help many people.
http://www.dizziness-and-balance.com/treatment/ttg.html
Inner ear pressure surgery.
http://www.menieres.org.uk/information-and-support/treatment-and-management/surgery#endolymphatic
But: non of these is the cure for MD. There is no cure. Only some symptoms can be treated. There are risks as always with surgeries and i believe they dont help with 100% probability everytime.
for Tinnitus there´s nothing. And T is my main problem. If someone´s main problem is the vertigo attacks something can be done.... and it might actually help.
Then there´s books http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias=stripbooks&field-keywords=meniere&rh=n:283155,k:meniere
I have a few of those. If interested (someone in Finland) you can contact me for loaning.
This is very good information that you posted Michael. Thank you for that. My hearing has dripped again....I am sure at some point it will not go back up...sigh.
For me, the biggest stress about my diagnosis is my worry and anxiety which leads to depression. I am going to have to work hard to combat this. I am currently working with a therapist on cognitive based therapy and learning how to change the way I think. My daily struggle is learning to live my life and not my worries.
Let's try to help each other with that, okay?
For me, the biggest stress about my diagnosis is my worry and anxiety which leads to depression. I am going to have to work hard to combat this. I am currently working with a therapist on cognitive based therapy and learning how to change the way I think. My daily struggle is learning to live my life and not my worries.
Let's try to help each other with that, okay?
my main problem is distorted hearing and hyperacusis. I have the T, but it's not huge at this time (though it has increased since last year).
I like the FB group I'm on because I hear about other people's symptoms. Opinions are sometimes all over the map, but I consider it as information to store in the event I have some of the issues come up. Here, there aren't that many people with Meniere's, so the sample size is small. And we all know the disease is different for everyone.
I like the FB group I'm on because I hear about other people's symptoms. Opinions are sometimes all over the map, but I consider it as information to store in the event I have some of the issues come up. Here, there aren't that many people with Meniere's, so the sample size is small. And we all know the disease is different for everyone.
@SueR @Teri
I found this TT one day just by coincidence when i did google search "meniere´s disease"and this particular thread came up. Must have been the day Teri started this, i think. First time i heard of this TT forum. I thought i say just something, made up a quick nickname... then i started reading other people´s T-stories.... now i am here almost all the time reading and sometimes making comments.
One of the first symptoms i remember is that distorted sound in my ear. It has been since that day. Let´s call that a day one. I dont remember when it was, perhaps in early 2010. I thought there´s something wrong with my phone´s speaker (ha ha
). i was a bit shocked when i moved the phone to the other ear and sound was clear. Ever since that i havent "used" my MD-ear with phones. No use for it since the sound is blur and distorted.
If my MD goes bilateral i can say that is something i cannot take anymore. There´s actually quite a good change for bilateral MD, some 40% within the first 5 years or so if i remember correctly.
Yes, this is not a MD Talk but there are also H-people here, Pulsatile folks... distorted, anyone? D-persons perhaps?
ha ha.
I can say i have them all symptoms: T, H, Pulsatile, Distortion, Ear pain, Pressure! not everything of those nice letters are severe in my case, no, but this MD gives quite a collections. Collector´s choice!
(cant believe i find this somehow amusing). This is so ridiculous a disease i actually laugh about it sometimes.
I found this TT one day just by coincidence when i did google search "meniere´s disease"and this particular thread came up. Must have been the day Teri started this, i think. First time i heard of this TT forum. I thought i say just something, made up a quick nickname... then i started reading other people´s T-stories.... now i am here almost all the time reading and sometimes making comments.
One of the first symptoms i remember is that distorted sound in my ear. It has been since that day. Let´s call that a day one. I dont remember when it was, perhaps in early 2010. I thought there´s something wrong with my phone´s speaker (ha ha
). i was a bit shocked when i moved the phone to the other ear and sound was clear. Ever since that i havent "used" my MD-ear with phones. No use for it since the sound is blur and distorted.If my MD goes bilateral i can say that is something i cannot take anymore. There´s actually quite a good change for bilateral MD, some 40% within the first 5 years or so if i remember correctly.
Yes, this is not a MD Talk but there are also H-people here, Pulsatile folks... distorted, anyone? D-persons perhaps?
ha ha.
I can say i have them all symptoms: T, H, Pulsatile, Distortion, Ear pain, Pressure! not everything of those nice letters are severe in my case, no, but this MD gives quite a collections. Collector´s choice!
(cant believe i find this somehow amusing). This is so ridiculous a disease i actually laugh about it sometimes.
ME TOO, Michael! ...about the phone thing!
I started with H. But after H subsided for a while, I recall distinctly, answering the phone and thought something was wrong with my phone! I was going to ask the tech guy (who ordered all the phones) to replace it. It was as if someone was hit the mute button on and off. Used the other ear and clear as day. lol
finding my way to TT: I got the H, doc tells me it's nothing but T. I knew that wasn't right, but I was searching for information. and since I DO have T in the other ear, joined TT. I wrote my intro and someone said sounds like hyperacusis. I then went to the H support info. This was way back in about December. Then in January, the dizziness started and I searched and searched for more info and read up on SCD (which I also have - bilateral).
Even though we are sort of our own little subgroup, we can relate to the symptoms that others have too... T, H, etc.
Michael, how long ago was it that you first noticed the distortion when on the phone?
I started with H. But after H subsided for a while, I recall distinctly, answering the phone and thought something was wrong with my phone! I was going to ask the tech guy (who ordered all the phones) to replace it. It was as if someone was hit the mute button on and off. Used the other ear and clear as day. lol
finding my way to TT: I got the H, doc tells me it's nothing but T. I knew that wasn't right, but I was searching for information. and since I DO have T in the other ear, joined TT. I wrote my intro and someone said sounds like hyperacusis. I then went to the H support info. This was way back in about December. Then in January, the dizziness started and I searched and searched for more info and read up on SCD (which I also have - bilateral).
Even though we are sort of our own little subgroup, we can relate to the symptoms that others have too... T, H, etc.
Michael, how long ago was it that you first noticed the distortion when on the phone?
SueR, must have been early 2010. i wish i remembered, it is sort of important for me. I was in that car accident in 2009. ... no, it was 2008! It guess i will never know if that was the trigger for my MD. if that distorted sound started before that accident... then the accident didnt trigger my MD. it doesnt matter really... i will never know. I have had ear problems since i was kid. inflammations... T started in the late ´90s as i mentioned earlier.
this is Hell. no doubt about it. but i still believe it is possible to keep on living. life just needs to change for me. I have changed a lot of things, way i think, feel about things. some things are not so important anymore and some have become more important. i dont have the energy anymore. i usually lie on the sofa and surf the Net.
i wouldnt call it habituating cause i think of my ear about 56 times in a minute. This is now more like a battlefield of survival.
Yes, it is easy to relate to almost every single ear problem due the MD. i can now imagine myself as support person for someone. That was something i never would have believed before. But this is the first time i have a chronic disease and have to live for the rest of my life with this.
this is Hell. no doubt about it. but i still believe it is possible to keep on living. life just needs to change for me. I have changed a lot of things, way i think, feel about things. some things are not so important anymore and some have become more important. i dont have the energy anymore. i usually lie on the sofa and surf the Net.
i wouldnt call it habituating cause i think of my ear about 56 times in a minute. This is now more like a battlefield of survival.
Yes, it is easy to relate to almost every single ear problem due the MD. i can now imagine myself as support person for someone. That was something i never would have believed before. But this is the first time i have a chronic disease and have to live for the rest of my life with this.
My ear started with fluid in my ear, then pressure, then T and distorted sound. I have T in my right ear, I just don't notice it now. When T first came on it was very loud and at one point it moved to my head and then to my right ear. Now my T is a low hissing sound, with crickets chirping, but the crickets seem to be more in my head than in my ear. I have fleeting T in my bad ear and my right ear often. I feel dizzy at times, but my ENT said the diuretics I am taking can cause that because she is also on diuretics (for a different reason) and they make her somewhat lightheaded/dizzy. She said it is her "new normal".
I have a question for you @MichaelM. It is my understanding that if you can relieve some of the fluid/pressure in your ear, your T will lower. Do you still feel the fluid/pressure in your ears?
I have a question for you @MichaelM. It is my understanding that if you can relieve some of the fluid/pressure in your ear, your T will lower. Do you still feel the fluid/pressure in your ears?
@Teri, i havent heard of that. It seems to me the whole diuretics/fluids in the ear is just a theory. Say this year, i have had absolutely horror seasons, usually weeks. Then i have had some "good" season, weeks, too. At the moment this is really, really terrible with loud pulsatile T, regular severe T, pressure and some facial numbness. All this time, this year, i have taken diuretics. Not every single day but a lot. Also betaserc everyday.
My theory: in my case nothing at all affects this except stress a little.
one of the worst things: i think i have lost more of my hearing in my sick ear. It snaps/crackles/pops all the time. You folks might have noticed that human people´s head´s "pressures" changes the whole time. If i swallow my T screams for a second or so. I am not sure if this is understandable in English.... i hear some varying noises almost every single second and in the background, so to speak, is my screaming T from Hell. Last to weeks have been sheer torture.
But here i am. Absolute tired but i wont give up now.
It´s just a sound, as they say. I have to admit i find it truly sad that here in TT there are many T folks who seems to think the same. Sorry to say this but if "we" (meaning T people) dont believe in this..... or start believing that "positive thinking" and chatting with some bored shrink in a CBT, TPT, KGB and other nice acronyms can "cure" and make the problem disappear or fade this i guess there is no hope no-one will ever start taking tinnitus and ear problems seriously.
After some two weeks with this spike i am pretty much done. I know this will fade one again to that basic level but right now i dont have the energy to wait for it. all i do is suffer.
My theory: in my case nothing at all affects this except stress a little.
one of the worst things: i think i have lost more of my hearing in my sick ear. It snaps/crackles/pops all the time. You folks might have noticed that human people´s head´s "pressures" changes the whole time. If i swallow my T screams for a second or so. I am not sure if this is understandable in English.... i hear some varying noises almost every single second and in the background, so to speak, is my screaming T from Hell. Last to weeks have been sheer torture.
But here i am. Absolute tired but i wont give up now.
It´s just a sound, as they say. I have to admit i find it truly sad that here in TT there are many T folks who seems to think the same. Sorry to say this but if "we" (meaning T people) dont believe in this..... or start believing that "positive thinking" and chatting with some bored shrink in a CBT, TPT, KGB and other nice acronyms can "cure" and make the problem disappear or fade this i guess there is no hope no-one will ever start taking tinnitus and ear problems seriously.
After some two weeks with this spike i am pretty much done. I know this will fade one again to that basic level but right now i dont have the energy to wait for it. all i do is suffer.
@MichaelM
I feel so badly that you have to be suffering so much....day in and day out.
Do you still feel like you are getting enough sleep? I am worry that you are not holding up well.
I agree with you somewhat about therapy iin that it is not a cure, but then I know that if I don'tt figure out away to stay strong mentally, then I will sin down and have a whole new battle of depression that can be just as debilitating as any physical disease.
I am trying to figure out the strategies that folks with debilitating conditions use to power through their days. I know they have their bad days but how have they built the mindset that right now, in spite of it all I WILL live my day with some joy.
I feel so badly that you have to be suffering so much....day in and day out.
Do you still feel like you are getting enough sleep? I am worry that you are not holding up well.
I agree with you somewhat about therapy iin that it is not a cure, but then I know that if I don'tt figure out away to stay strong mentally, then I will sin down and have a whole new battle of depression that can be just as debilitating as any physical disease.
I am trying to figure out the strategies that folks with debilitating conditions use to power through their days. I know they have their bad days but how have they built the mindset that right now, in spite of it all I WILL live my day with some joy.
i sleep a lot. I dont know how refreshing it is anymore, it is more like passing out to "coma".
This is debilitating, yes. It is hard to describe MD for people suffering with "just" Tinnitus. This MD is so much more.
I have been thinking of quitting this TT reading... i think i belong to a MD forum but is there one.
In this thread someone linked some forum and maybe i should read through all the posts again.
I see now pretty clearly that my condition is much more worse than that of normal T-sufferers´.
I dont want to sound too negative, that is. I just wish there was a way to escape this noise for a minute or two but no. This is going on as long as i am awake no matter where i am.
One good thing: i got that job. It is only a part-time post but still. It is something.
This is debilitating, yes. It is hard to describe MD for people suffering with "just" Tinnitus. This MD is so much more.
I have been thinking of quitting this TT reading... i think i belong to a MD forum but is there one.
In this thread someone linked some forum and maybe i should read through all the posts again.
I see now pretty clearly that my condition is much more worse than that of normal T-sufferers´.
I dont want to sound too negative, that is. I just wish there was a way to escape this noise for a minute or two but no. This is going on as long as i am awake no matter where i am.
One good thing: i got that job. It is only a part-time post but still. It is something.
@AnnaW Hello. Welcome to "MD-Talk", to our little Meniere´s Disease sufferers´ subgroup.
I read your story on Introductions-page. The way you describe the attacks are like mine: lasts for hours and hours, vomiting, unable to move... oh boy.
I have also started to be afraid of bilateral MD. My right ear is pretty much useless now. I can hear something put people talking is like they are talking 100 meters away.
Yes... then there´s Tinnitus. the Noise from Hell. I cannot curse this enough. I, too, wish to die sometimes since there is no rest from the loud noise anymore anywhere. i can hear it above all thanks to hearing loss. Fatigue is enormous, i am exhausted most of times, had to quit working, too.
But here we are: alive. it is hard sometimes and i am seeing a psychiatrist, taking pills (http://en.wikipedia.org/wiki/Mirtazapine), using too much alcohol... suffering, to be honest.
Let´s share our feelings here.
I read your story on Introductions-page. The way you describe the attacks are like mine: lasts for hours and hours, vomiting, unable to move... oh boy.
I have also started to be afraid of bilateral MD. My right ear is pretty much useless now. I can hear something put people talking is like they are talking 100 meters away.
Yes... then there´s Tinnitus. the Noise from Hell. I cannot curse this enough. I, too, wish to die sometimes since there is no rest from the loud noise anymore anywhere. i can hear it above all thanks to hearing loss. Fatigue is enormous, i am exhausted most of times, had to quit working, too.
But here we are: alive. it is hard sometimes and i am seeing a psychiatrist, taking pills (http://en.wikipedia.org/wiki/Mirtazapine), using too much alcohol... suffering, to be honest.
Let´s share our feelings here.
Sry to hear Michael, i know 2 people with MD. My fysio and a relative. Seems like there are MD and MD, Booth are doing pretty well at least what it looks like.
Don´t use the Lapin Kulta with Mirtazapine
, i am on it as well and i think it mixes very bad with alcohol. Half a bottle of whisky and i am out and the anxiety the next day is about 4 times what it use to be.
Don´t use the Lapin Kulta with Mirtazapine
, i am on it as well and i think it mixes very bad with alcohol. Half a bottle of whisky and i am out and the anxiety the next day is about 4 times what it use to be.
@Teri , thank you! it´s a start i believe for something good.
@Nick the Swede : yeah, MD is something that really doesnt shine on from people´s face. This is an invisible soul reaper. I guess nobody could tell how i feel just by looking at me. I look like a normal human being.
The doctor said last time "you look like a healthy guy without no worries". but that´s the way these ear problems are. Invisible, not really existing. and at the same time i am a total wreck with perhaps 30% energy left compared to what i use to have. i feel like Ferrari California with old Saab 96´s engine.
I try to take it easy with Lapin Kulta (not my favourite...). I dont really drink whiskey or vodka at all... i consider myself a beer enthusiast.
@Nick the Swede : yeah, MD is something that really doesnt shine on from people´s face. This is an invisible soul reaper. I guess nobody could tell how i feel just by looking at me. I look like a normal human being.
The doctor said last time "you look like a healthy guy without no worries". but that´s the way these ear problems are. Invisible, not really existing. and at the same time i am a total wreck with perhaps 30% energy left compared to what i use to have. i feel like Ferrari California with old Saab 96´s engine.
I try to take it easy with Lapin Kulta (not my favourite...). I dont really drink whiskey or vodka at all... i consider myself a beer enthusiast.
Was just joking regarding the Lapin 
. Pretty awful beer. I prefer the IPAs , some good pretty cheap ones out there. Brewdog Punk, Sierra Nevada Torpedo to mention a few.
. Pretty awful beer. I prefer the IPAs , some good pretty cheap ones out there. Brewdog Punk, Sierra Nevada Torpedo to mention a few.
Finnish lagers are not so good... they all taste the same. They are OK but that´s it. IPA´s, APA´s, ales.... more like my stuff. Pistonhead has some really good beers there in Sweden. I think no-one is importing them here. They use to be here many years ago but havent seen them ever since. I was in Huskvarna some weeks ago travelling through to Helsingborg. Why didnt i buy a pack of Pistonhead´s then! Jävlar!
Hi all, some good news: i visited a dentist today and there might be sumthing wrong with my TMJ and occlusion. She sent me to occlusion specialist, who i will meet next month. They will make a dental guard (mouthguard, what do you call in the US?).
No it doesnt take MD away, absolutely not. But..... there is a chance for the first time this year that i might get some help and relieve for at least one or two of the symptoms i am suffering from. If it lowers the volume of T it is worth every single euro i have. not to mention the numbness i feel most of the time in my cheek and in my jaw on the right side... The dentist knew the basics of MD (.."isnt it something with balance and ear, right?"....) she is a dentist and doesnt really now more than that so what can we expect from the people around us.
Anyway... what i wanted to say is: this is the first time this year i get good news.
And another thing: go to the dentist and have your jaw checked!
No it doesnt take MD away, absolutely not. But..... there is a chance for the first time this year that i might get some help and relieve for at least one or two of the symptoms i am suffering from. If it lowers the volume of T it is worth every single euro i have. not to mention the numbness i feel most of the time in my cheek and in my jaw on the right side... The dentist knew the basics of MD (.."isnt it something with balance and ear, right?"....) she is a dentist and doesnt really now more than that so what can we expect from the people around us.
Anyway... what i wanted to say is: this is the first time this year i get good news.
And another thing: go to the dentist and have your jaw checked!
I found this on the internet. I have been reading about this young man, Ryan Adams.
He has really struggled with Meneire's Disease. He has found that cutting salt, exercise and eating well with taking supplements has helped.
I saw that he has a CD at our local Starbucks. I think I will buy his CD and listen to his music. I like his sound.
He has really struggled with Meneire's Disease. He has found that cutting salt, exercise and eating well with taking supplements has helped.
I saw that he has a CD at our local Starbucks. I think I will buy his CD and listen to his music. I like his sound.
@Teri,you read my mind. i was just about to post the same video.... amazing. brings me to tears almost.
i start to believe in telepathy soon if this continues. Myself and mr. Adams we are about the same age, got diagnosed, i think, both of us at the age 0f 36.
i like his music a lot. there is so much feeling and hope there. Also i find that good old Americana there.
listen the song Pick me up. a great song. I wish i could sit down and have a pint with Ryan. We could discuss MD!
i start to believe in telepathy soon if this continues. Myself and mr. Adams we are about the same age, got diagnosed, i think, both of us at the age 0f 36.
i like his music a lot. there is so much feeling and hope there. Also i find that good old Americana there.
listen the song Pick me up. a great song. I wish i could sit down and have a pint with Ryan. We could discuss MD!
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