Meniere's Disease

[Teri]

Would anyone who has been diagnosed with Meniere's Disease be interested in posting in this thread?

I have recently been diagnosed with Endolymphatic Hydrops which my ENT tells me is a form of Meniere's Disease.

With Meniere's tinnitus is just one of the symptoms. Tinnitus typically occurs in one ear (although I have had T travel to my head and over to the other ear). I hear a variety of sounds with spikes that occur off and on throughout the day. I also have dizziness off an on. Thank the Lord, I don't have severe vertigo as some folks with MD do.

Please post if you are trying to figure out strategies to combat the tinnitus that comes along with MD.

 

[MichaelM]

I have Meniere´s disease with severe tinnitus, fluctuating hearing loss, hyperacusis, feeling of fullness and pressure in the ear, varying degrees of dizziness and loss of balance, fatique and of course occasional violent vertigo attacks which can last for 5-6 hours during which I am unable to move. Of all these i´d say that tinnitus is the worst.

 

[yonkapin]

I don't have too much knowledge about Meniere's disease at all.

However I'm super into MMA, and I know the president of the UFC had pretty severe Meniere's that was messing with him big time for a few years. He was so desperate he had major surgery done on his ear; I'm not sure of the specifics but I remember it had huge risks in regards to damaging his hearing further and messing with his balance permanently but he was that desperate he was willing to risk it and even documented it on a video blog. He got the surgery done, but it was unfortunately a failure because his symptoms remained exactly the same.

He then got referred onto do Orthokine therapy at a specific clinic in Germany and he has been all good ever since. He still has tinnitus but all his other symptoms have completely gone. Only problem is that the therapy is super expensive (except here in Australia because our medicare system covers most of the costs thankfully) and I'm pretty sure the only clinic that has any experience in treating Menieres with Orthokine is the one in Germany, but I could be wrong about that.

Since then he's been doing very well, the guy is constantly in loud stadiums filled with thousands of people nearly every week and seems to be doing absolutely fine in regard to his Meniere's now, so he must be doing something right.

Anyway, just thought I'd chime in with that little bit of information - if you guys have some cash to splash maybe you can look into it. I've read about Meniere's a bit and it seems like a very difficult condition to deal with, so I hope you guys are doing okay and really hope things get better for you!

 

[Teri]

I agree, Michael, that my T has been the most difficult for me as well. I seem to be able to mange the fluid build up with diet (low salt, no alcohol, very little caffeine and chocolate). I also take a diuretic. All the changes seem to have helped somewhat.

It is a recent diagnosis, so I guess time will tell.

 

[MichaelM]

Living with Meniere´s is a lonely way of living. Nobody can´t see it, feel it, hear it, or know what you exactly are experiencing. MD is a bit different for every sufferer for what i have heard and read. There are days, sometimes weeks, i feel kind of OK but then there are months while every little shadow of hope is lost and I am in total darkness with this invisible disorder in my ear. After this started i havent had a single day of "normal" life I used to have.

Sometimes the pressure alone inside the inner ear is giving pain that, i think, most people would find devastating. Add T to that, so loud you are not able to hear the other person talking. And these are only 2 of the symptoms with MD.

From my experience Meniere´s is a mental and psychological battlefield at the end of the day. It wont kill you, there is no cure and nobody can´t see or measure it. For me it has changed almost everything: the way i feel or how i think, what i can and cannot do... the fatique, perhaps depression too. I dont think too much about the future anymore.

I am no doctor or any medical person but here where I live you dont have Meniere´s without at least 2 vertigo attacks that last minimum 20 minutes. if you dont get those attacks there is hope you dont have Meniere´s and it is something else, and there might be a cure.

 

[Marlene]

Having tinnitus and different problems that go along with it. I think the balance has been my worst with tinnitus.
Due to the balance it keeps you rooted,prior to the balance,the tinnitus never done this alone,I was still going about my day to day activities quite happily.Yes the tinnitus use to annoy me ,but this balance is a whole new ball game ,to contend with.My tinnitus is like Teri 's it goes over the head.Today my ears are screaming,I've hoovered,didn't drop pitch down,as sometimes it will,to were i can ignore it most of the day with some luck thrown in.Ive tried all the normal tabs out there for the balance.Friend of mine her dad has Meniers,hospital put him on some tabs,what have you been given Teri and Michael if any ?Think of you both this day .

 

[MichaelM]

i take betahistine, max amount per day here is 24mg x 2. It is impossible to say whether it helps or not but i tend to think it does help. With Meniere´s there is no pattern for the vertigo attacks... I have diuretics, too. Cant say if they work or not for my problems. Tried many things: no caffeine, low caffeine, low salt, no alcohol... but havent found anything that would really help.

My balance is somewhat OK compared to many other MD sufferers´balance. There are days i would not drive a bike and when i stumble on doors and furniture but those are few, luckily. I think myself that MD is not a "disease" in a typical way they exist but a syndrome. This is so many-sided a problem it keeps amazing me every week. I find new noises in my ear every now and then while the three basic sounds keep on playing their demolishing tune through the years.

Last two days have been total cacophony with at least 3 different very loud sounds screaming 24/7. I go to work, try to do what i can but after 8 hours and traveling back home i literally do crash to bed and "die" for an hour or two. it is not a choice i make but i just fall... it is a horrible feeling of lethargy. There are better weeks coming in the future but when my symptoms reach this level it is hard to think more further than the next day.

 

[Marlene]

Hi Michael ( my brothers name) yes I've had Betahistine,Cinnarizine,Serc.Thats why I was thinking of what Meniers patients are give ,even to people who suffer from migraines,who also have balance issue.
How you manage to work like it ,is totally beyond me Michael,but you got no choice. I know Cinnarizine is given for Meniers just wondered if a hospital ENT have a better tab for its patients.One that's does help,I always thought Meniers was with sickness feeling,but have been told that's not always the case.Ive got a booklet produced by the Brain and Spine foundation that's informative,it's a free booklet here in UK,explains a lot in detail.Gives exercises etc my optician says my tinnitus causing the balance back in January.
My husbands had tinnitus for over 30 yrs never had an issue to balance with his,but my aunt does with her tinnitus ,weird as you say even to how in a day you can have several noise changes.if it was a consistent noise you'd learn to ignore it lots more,the brain plays havoc with it all.
One day at a time ,I'm with you there.Big hug Michael .

 

[alifalijohn]

I have Meniere´s disease with severe tinnitus, fluctuating hearing loss, hyperacusis, feeling of fullness and pressure in the ear, varying degrees of dizziness and loss of balance, fatique and of course occasional violent vertigo attacks which can last for 5-6 hours during which I am unable to move. Of all these i´d say that tinnitus is the worst.

I have dizziness all day long, also tinnitus, doc. did MRI on ears, also Audo..all other test, said I do not have Md.I can live with the T , but the dizziness gets to me . About 8 years ago , I woke up with the room spinning, thought I was dreaming, next morning I felth fine, it never came back after that , five month ago the dizziness started and 3 months ago the t started..I do not spin with the dizziness or have drop attacks..so I am praying it is not Md. GOD BLESS YOU ALL, I PRAY THAT THEY FIND A CURE FOR ALL OF US.

 

[Marlene]

Hi Ali thought 3 years a long time living 24/7 with it ,but for you to have it then to stop,now it's back along with tinnitus,got to be all connected.Mines never been that I want to drop,lots do,or the dizziness,just the balance to walking,so yes it's my ears doing it,but how does one get it rectified,answer I would love to have.i know my eyes weren't doing it,but had them checked out all the same, to rule it out for piece of mind,as I've had it for so long.
Feel for those who have to go to work,how it's done only heaven knows.
Each one of us with it ,different country's with Drs we see maybe ,just maybe we will find the correct help from one dr out there somewhere,that's my hope,and pass it on.
MRI,CT scan neck X ray so far and nothing to show up.Going to get my dr to get my Eustachian tubes looked at,as my ears always feel blocked,is that what's the cause of it.?Least that can be sorted,if the case.X

 

[Teri]

My MD is in the initial stages I am sure. I seem to be okay with taking the diuretic and watching salt. I do not drink alcohol and limit caffeine and chocolate.

I am dizzy off and on but the room does not spin. My understanding is that MD is progressive. Michael, I am so sorry that you are struggling so much. This is what I want to offer to you. I found a good friend in my community that has had MD for at least 20 years. She said hers has gotten better and has been more managed. I wish you could find someone who you could get some support from. This forum is great, but an opportunity to meet with someone "person to person" who i sstruggling the same as you are, may be helpful to you.

Keep posting....let us do our best to support you. Feel free to vent here.

 

[Marlene]

Great Teri you've found someone ,just to be able to talk to somebody with it,especially that length of time ,got to be a benefit alone,the dos and dont's she has learnt about Menieres over those years.wonder if they've got support groups,must have somewhere in Michaels area,hope so.I didn't know my friends dad had it,until I mentioned my balance to her.you never know who's got what out there,be nice if he could find another with it,all goes to help.Im amazed at how many people have these balance issues, 4 alone in my family .

 

[MichaelM]

Teri, could be initial stage of MD. I have also an understanding that Meniere´s is progressive. the doctor said mine evolved quickly.

My Meniere´s started with slight attacks. They came once or twice in a month and lasted 8-12 hours. I was still able to move and walk by bracing my self against the wall or doors... I have divided my attacks on 3 different scales. Those were stage 1 attacks; was still able to move and the world didnt spin, there was no vertigo. They started getting worse. At stage 2 attack i was able to crawl and sit.

The first paralyzing attack (stage 3) came pretty soon and havent had those mild ones ever since. I like to use the world paralyze because during these attacks all i can do is lie on the floor. If i move my head i vomit. I lose the sense of time and directions. These attacks do "only" come once every 3 months or so.

My message is: here in Finland you need to get 2 severe vertigo attacks before you are diagnosed with MD. Dont give up. There are many reasons for dizzines and there might be cure. Thank you all for your support.

Tinnitus can be caused by jaw problems or occlusion issues so they say here. Have everything else examined before MD. MD creates loss of hearing (my own audiogram is a classical type of Meniere´s). If you dont have loss of hearing, from my point of view it is not Menieres. once again i am no doctor or professional with these but just a fellow sufferer offering you guys some opinions from my experiences with this terrible disease.

 

[Teri]

I do have hearing loss. It is up and down. Which also leads to a MD diagnosis. My left ear's loss is greater than the right ear.

I tried wearing a hearing aid but the ear specialist indicated that it is probably too soon to try an aid because of the uncertainty of where my hearing will land.

Please hold out hope, Michael, as you may at some point get better control of your Menieres. Do you have a warning of when the attacks may come on? I know that my friend indicated that she is lucky because she gets a particular headache right before each attack. She is also lucky because she does not have tinnitus at this point.

 

[SueR]

I have only read the first couple of posts in this thread, as I am dead tired right now and want to spend quality time reading them.

Dx'ed in April with MD after problems started in November '13. I've completely given up alcohol since my last appointment when the doc said to... so, it's been almost 7 weeks. My symptoms, IMO, are mild. I've been going thru a very, very stressful period of late, and just today I'm starting to feel some light-headedness returning.

One note before I jot off and read more later... the "traveling" T... do you mean like the sound you hear is like a car driving by? zooming from one side to the other? That has happened to me a few times and I thought it was really odd.

that's all for now...

 

[Teri]

Michael...something else I wanted to add.... My ENT explained to me that Meneires is a generic term used to diagnose when physicians really don't know what caused the fluid build up in the inner ear. She also indicated there is atypical Meneires or (endolymphatic hydrops) or classical Meneires in which all the symptoms are present (e.g. fullness in the ear, tinnitus, fluctuating hearing loss, vertigo, dizziness).

She stated that I have, at this point, atypical Meneires.

I am not sure why the doctors in your area want to wait until you have 2 severe attacks before the diagnose you. Did they say what that is? It seem more prudent to start treating before it reaches that point.

 

[MichaelM]

Teri, i think you need to get 2 20minutes-long attacks to confirm that it truly is Meniere. My doctor told me nothing else on Earth causes vertigos so long, only MD does. Everybody feels dizzy sometimes for a second or a minute but with Meniere´s one gets violent vertigo attacks for hours. As i mentioned i had mild attacks before the bad ones and they were not "good enough" for the MD diagnose. 2 different doc´s have confirmed this here. I can ask more when i see the doctor next time.

Attacks do give warning signs: some 15-30 minutes before vertigo i start feeling heavy nausea and slightly off-balanced. It is good at that point to find a quiet place where I can lie down for the next 12 hours and vomit...
needless to say I dont wish this happen in an aeroplane, train, ship, at work, etc etc.

About the treatments: there really are no treatmens. Surgery can be done to help the attacks but the risk of destroying your hearing is high. And it only does help to the attacks. There is surgery to relieve the pressure but nowadays they dont do it often anymore. It can help or then not. Risks high again.

Betahistine, yes, if it helps... who knows.
I have seen 3 different doctors here. They all basically say: cope with it, son, and get on with your life, try to exercise.

Tinnitus alone can make one crazy and I try to cope with T, pressure in the ear, loss of hearing, dizziness, vertigo attacks, fatique, loss of balance (doc said yesterday that i should avoid climbing...)
All this makes life pretty interesting these days. To the point i am seeing psychiatrist, psychologist, nurse specialised to coping with diseases...

But there are good days in between. I dont want to sound to depressed.

 

[Magpie]

I was dx with Meniere's about 15 years ago. The symptoms came on suddenly one day: vertigo, nystagimus, hyperacusis, tinnitus, fullness and dizzy drop attacks several times a day, I thought I was going mad or having a nervous breakdown. My doctor sent me for an MRI almost immediately as I had cancer a couple of years prior to all this turmoil. It came back clear so he sent me to an ENT who referred me to Melbourne Eye and Ear Hospital for tests including ENG, ABR, ECOG and other balance tests and the dx was Meniere's. Over the next few months I lost hearing in the lower frequencies and the symptoms continued unabated. I tried serc and betahistime and valium without success then I found this wonderful support group on the internet and they literally saved my life because I was suicidal at that point http://www.menieres.org/ After reading the posts I no longer felt alone and helpless and just knowing there were others going through what I was going through lifted a weight off my mind. I also joined the local support group and sought the help of a counsellor and I attended their meetings: http://www.menieres.org.au/ It was from those 2 contacts where I found that lowering salt was one of the key elements in reducing Meniere's symptoms. Immediately that is what I set out to do and I gave the salt shaker the boot and only bought low salt or salt reduced foods, never ate take out food and watched what I ate ensuring it was not with a lot of salt. My recovery took about 8 or 9 years and my symptoms gradually subsided and now I have tinnitus, occasional fullness and occasional vertigo and hearing loss but otherwise I'm pretty normal


http://www.saltmatters.org/site/index.html

 

[Teri]

Michael, it sounds like you are getting some good sound advice. What is Betahistine? Is that a nose spray? I am so glad that you get a warning. At least you have time to adjust yourself before the attack. Do you find yourself avoiding long trips or other such endeavors that would not be a good place to be if you were to have an attack?

I feel lucky at this point that my symptoms are not severe. Just from reading Magpie's links it seems as if there is some disagreement among physicians in diagnosing MD.

Like you, Magpie, I have lowered my salt as well as take a diuretic each morning. I seem to do much better with eating less salt. I realize now that when shopping for groceries, I need to shop the perimeter of the store rather than the middle. The products in the middle isles seem to be very high in salt...particularly the processed foods.

Thank you for the links, they are quite useful. I will definitely refer to them from time to time.

 

[SueR]

I still havenn't read all the posts here... I've been under more stress than I think I ever have before.

I think I'm having a relapse. My hyperacusis is pretty bad right now. My quiet overhead fan was too loud so I had to turn it off. it was on low, and has a very slight motor noise... usually it's so quiet, I have to hold the pull-string and feel for a vibration to know if it's on or not. I've segregated myself into my room because the dog panting is too loud.

aural fullness.

and a little bit of dizziness. I've never had the vertigo.

Time will tell if the headache and fatigue are MD related or just a side-effect of the stress. I know it can be MD, but I've been dealing with a lot lately and could just be that.

 

[Teri]

(((Hugs Sue)))...I am fighting a dreaded headache today. The T seems to be calmer..although it might be because I am learning to ignore it. Tomorrow will be better...get some good rest.

 

[SueR]

yesterday I had a very low frequency fleeting T... like 200 Hz. I wonder if that's my warning sign. I'll have to keep that in mind.

woke this morning with the AC sounding like Niagara Falls.

too much stress in my life right now, but can't do much about it. Only 1.5 weeks left of 3 hrs/day in my car... that'll help with the stress anyway.

 

[Marlene]

Hi Sue This dizziness is a rotten thing to have,I think stress is a kicker to it,and you say you've been under a lot,stress will also affect the tinnitus ,that's my findings to it.more stress equals more up and down to it.it doesn't help me with my Blood pressure either.
We're get through it all together,let's know how your day goes,hope the dizziness fades.sometimes a good de stresser. Is some sleep,take yourself away from what's causing you grief,and let it go .XX

 

[SueR]

The stressors need to be endured, unfortunately, but will try to be good to myself when not dealing at that moment with the stressors.

Ever hear of Topomax? Thoughts?

At doc office and was prescribed. Also something called Soma-something.

 

[Marlene]

I've taken Migraleve, ( topomax) so far best I've been on,only take on day I'm pushed with bad head,not heard of the last one.Give the Topomax a go.
Sometimes you can get silent migraines which can give you this as well. But people don't realise it,not just the tinnitus being a right pain.So my dr says,hence now the Migraleve tabs.
Hope your stressors are soon put to rest Sue .Weekend maybe try and get some you time in ,sounds like you need it.

 

[MichaelM]

Teri, Betahistine is similar to betaserc. Same stuff, differend brand.

I wouldn't say i do avoid something (long trips, flights, ships...) but after the last few paralyzing attacks I am constantly thinking about "the Next Attack". I know it is coming but i have no idea where and when. Could be today or next summer or never. The attacks can actually stop for good, but you will never be sure about that.

So I make plans: if it happens now where do I go, is there enough time to drive home... stuff like that. It takes energy, a lot of energy and creates stress, which makes MD worse (so they say and i believe it). At work I have told people the basics about this disease. Now they know there is no need to afraid if the attacks come or call the ambulance. I have told my family and friends, too. Dont know if you have seen this one
http://news.illinois.edu/news/14/0625tinnitus_FatimaHusain.html

My main problem is still the tinnitus end inner ear pressure. I feel i am not the same person i used to be. It is frightenin that tinnitus alone can change how we think and feel and how our emotions work..... what can Meniere´s do i dont dare to think.

I am a bit cynical or pessimistic, i don't plan things a lot anymore, i don't particularly enjoy anything like i used to... I dont read Positivity Threads. There is nothing positive with this. I am really tired, have been for some years now, in two word: i suffer. I have had Meniere´s only for a few months now but the symptoms started some years ago. It took ages to get diagnosed. I like how americans use the term Quality of Life. My QoL has decreased significantly.

 

[SueR]

I'm planning on moving this fall, close to work. (divorce situation)

I've thought about taking my dog with me, since the not-yet-ex would just find a home for him. I would be willing to part with him, if the not-yet-ex wanted to keep him, but that's not the case. When I got home from work last night, I was toast. I had a rock concert going off in my head with every little noise and I was just exhausted. I went to bed to rest. Although I didn't sleep all night, I didn't leave my room until this morning.

Anyone else have a pet and it's just you and your pet? What do you do when you can't even take care of yourself, let alone a being that relies solely on you to take care of him?

I might have to give up my dog.

 

[Marlene]

Hi Sue now understand how it is for you,I'm sorry.Cant believe what people are put through in there lifetime,see your problem in regards to your dog.Have you any family that could home him ? Hard thing to part from Dog not husband,you can go on make another life,my 2 sisters have.Hope it all works out in your favour,you to need a life's break by sounds of it.Think through to maybe holding on to your dog ,or just try to re home him for a short period,then when your life's sorted have him back.its been done .
He will be something your happy to see when you return from work.
Hope you sleep better tonight. Your soon to be ex sounds a right charmer as we say here in UK hey and I've never met him.X( charmer to us is not very nice )

 

[SueR]

actually, the divorce thing is not even the highest on my stress list. It's dealing with government agencies and a person who is supposed to be knowledgable about the Americans with Disabilities Act (ADA). ...not for me, but my son. She works in the disabilities office of the college he will be attending. Multiple people from the govt agency that he is dealing with have been very difficult to work with. They offer themselves to him, he says yes, and they are all over his shit about the inconvenience (that's the short-short version)... and that's when they DO respond.

and tuition bills due soon with promise of funds from said govt agency... and no word about whether they plan on coming thru or not.

The list goes on and on and on... I'll stop there before I work myself up again...

 

[Marlene]

Hope someone on this site can give you advice on this regarding you son,maybe ones been in same situation or know someone who has,sounds like UK to me,the run and hurdles you have to jump,to them finally sorting it out.
It will be,no fear.