Comments on my life and meniere's disease: Meniere’s triad

hi! Peggy, i've been to an opthalmologist and ...

2012-01-15T17:19:35.497-08:00

hi! Peggy, i've been to an opthalmologist and he said i have a 20-20 vision and there's no need to ware glasses, after a few days i go an ENT, cant see anything, then i go a neurologist he said that i have a mild vertigo, but i was not convinced. then i go to another ENT again, and he said that i might have a meniere's disease, he refer me to a doctor that specialized meniere's, the doctor confirmed that i have it.. at first m always hoping when i wake up in the morning that it will be all normal again, but i realized that this is my life and meniere's disease. thank you for your reply, i really appreciate it :).. this is my other symptoms tintinitus in the left ear, cant focust my eyes jumping left to right, nausea, dizziness imbalance, panic attacks, cant watch tv longer too..

2012-01-15T15:52:29.666-08:00

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Francis, I've never experienced what you descr...

2012-01-15T06:54:09.460-08:00

Francis, I've never experienced what you describe, but maybe you should see an ophthalmologist? That's where I would start.

hi jan, we have the same exact symptoms, i can wat...

2012-01-14T23:36:05.541-08:00

hi jan, we have the same exact symptoms, i can watch better in non HD rather than HD :)

hi! is there anybody here have a symptoms like tou...

2012-01-14T15:23:00.438-08:00

hi! is there anybody here have a symptoms like tour seeing a neon blueish dot sometimes?

I had not seen the Cawthorne Cooksey exercises lai...

2011-11-06T06:00:11.257-08:00

I had not seen the Cawthorne Cooksey exercises laid out like this before, but it's basically exactly what I was doing in vestibular rehab therapy. Here is a link for the exercises, as Dr. Timothy Hain describes them:

http://www.dizziness-and-balance.com/treatment/rehab/cawthorne.html

Thanks, Lauri. :) And yes, all of that stuff does...

2011-11-06T05:57:12.314-08:00

Thanks, Lauri. :)

And yes, all of that stuff does sound familiar. *sigh*

Jan~ My eyes are constantly sending false info to ...

2011-11-05T18:52:26.858-07:00

Jan~
My eyes are constantly sending false info to my brain, and it does mess with balance.
Our balance is taking a beating from both our ears and our eyes.
One weird thing about the eyes..for me it sometimes looks like things are moving or 'breathing' when I know they aren't. I have to keep telling myself & my brain..it's not real. Ignore it.
Strangely, it helps considerably to do that. :)

Also...keep in mind that you have every right to seek a second opinion, or change ENT's if the one you see now is not supportive.
Best of Luck!

Peggy~ Screw depression! You are where you are......

2011-11-05T18:29:49.046-07:00

Peggy~
Screw depression!
You are where you are...if your body won't let you fully function yet, then there will be no rushing it.
I'll tell you something...just after they did the operation on my ear I thought I would be getting stronger and heading back to work. So excited! Couldn't wait to be "normal" and make money again. Told everyone I was going back to work. Only that's not how it went.
Instead of getting better, all the symptoms seemed to be returning, and my Doctor (you know what a jerk he was) was dismissing it all
as depression. Yeah, right.
I felt like I should be able to keep functioning since MOST of the vertigo was gone, but even before the full vertigo returned (which of course it did) I was getting nailed by frequent Nystagmus and 24/7 semi-vertigo/SUPER dizziness. Sound familiar??
My hearing was a hot mess~deaf on one side/distorted on the other, with roaring tinnitus.
I could not function well at all, but like you...I felt I should have been able to.
Sometimes a semi recovery is just not enough.
Please don't let yourself get down.
Your body has sustained some major damage.
You need healing time.
I am thankful for you that right now you are not having to deal with the full vertigo. :)
Hang on kiddo!
Lauri

H'mm. I'm not sure where this will go for ...

2011-11-05T13:18:27.350-07:00

H'mm. I'm not sure where this will go for me. My ophthalmologist was reluctant to try the prisms for me to begin with, so I wonder what he will say to the thought of going stronger. Mine is in one lens only, and it's very weak. I think I'll talk to my ENT, too, since it was her idea.

I keep having thoughts lately that I wish I could go back to work, and try to convince myself that I really CAN go back to work, or that I'm just faking or exaggerating the symptoms I still have, or that a judge will laugh me out of his chambers when I go for the disability hearing... it's driving me nuts. I feel so useless and like such a fraud, but then I go out and can barely function. It's just plain maddening. I hate all of this so much.

At least when I was throwing up and falling down every day I could make a really strong case for being seriously ill. Now, it's hit a plateau that I can't deal with. It's fairly low-level, but often totally debilitating. I'm making myself crazy.

Very depressed this week.

Hi Peggy! Mine were the regular prism lenses. They...

2011-11-05T11:49:14.887-07:00

Hi Peggy!
Mine were the regular prism lenses.
They tried the progressive first and I had a terrible time with them. Went to the regular prism lenses (& just wore my usual readers for up close work.)
The prism's had to be adjusted twice..he put the prism in BOTH lenses instead of just one, and made them both a little stronger. Made a huge difference.My vision was still blurry until he did that.
It took about 2 weeks to adjust, wearing them more and more each day..then wearing them as much as possible after 2 weeks.
Yes..at first had dizziness and headaches.
Also some eye achy feelings.
You might need to have changes made to your prescript.
I really could not handle the progressives at all.
Hope they will work for you. The clearer vision is so much better! I don't seem to strain as much visually, resulting in less headaches now.

Just had the VNG testing again yesterday. (hate it)
Hoping to know more of what the ears are up to at appt. on 14th.

hello jan because we have menieres, the eyes have ...

2011-11-05T11:16:13.075-07:00

hello jan
because we have menieres, the eyes have to take alot more of the input, as the ears are faulty and already sending wrong messages to the brain. hence too much visual stimulation sends the eys into overdrive, i have been noticing this with menieres, also. but thats why doing exercices like Cawthorne Cooksey is a vital part of coping with menieres.
regards
ali

Now that you mention it, I have been going to a ph...

2011-11-05T11:11:27.541-07:00

Now that you mention it, I have been going to a physical therapist for balance issues, only a few weeks with little improvement so far. However when she did a test with my eyes on the first visit, she moved an object from side to side while I kept my eyes stationary which is went a lot of doctors do. Then she did a test vertically moving the same object up and down and she discovered that my right eye jumps up to the top once it reached the middle point. I thought I was blinking but that was not what was happening. She sent a letter off to my ENT but of course there was no response from him. I will see him in December and really question this issue because it might have something to do with my balance. Has anyone else ever experienced this problem? Thanks for responding to my other posts the information is answering the things I have concerns about.

A word on prism lenses... I got mine exactly a wee...

2011-11-05T10:15:03.776-07:00

A word on prism lenses... I got mine exactly a week ago, and am finding it difficult to adjust to them. Of course, they are also progressive lenses, which makes it a little tougher, but I was sick to death of having to change glasses all the time.

Lauri, you said it took you a couple of weeks to get used to yours, right? Did you also have progressives? And did you feel worse before you started to feel better? The past two days or so have been awful for me, with a lot of dizziness, blurred vision (even with the glasses) and some nausea.

Any thoughts on the adjustment phase? Thanks...

Hi Jan~ I had the exact same eyesight problem when...

2011-11-05T09:45:11.638-07:00

Hi Jan~
I had the exact same eyesight problem when Menieres first began for me, and my Doctor's dismissed it also.
After having it non-stop for 3 years, I can say that they are WRONG...it is totally Menieres related.
The vision issues I experience are just like yours, and what I found was that the Nystagmus (eye shaking) that happens during an attack can also happen when you aren't in full vertigo. (spontaneous Nystagmus)
Gently place your finger tips over your closed eye, and you will be able to feel the eye movement under them when it's happening.
I also believe that Menieres weakens the eye muscles, thus the strange vision we get.
I finally got glasses with PRISMS in them..which helps some. Check the site..David has a thread on prism glasses you might find helpful.
I can't watch HD either.
ALWAYS move away from tv or computer the second you feel funky. In my case it can & does set me off.
You are not alone!!

Hi Jan, I think that vision does play a part in it...

2011-11-05T08:12:34.575-07:00

Hi Jan,
I think that vision does play a part in it because of the connection between your vision and your balance.
It certainly has in my case.
thanks
David

Jan I was searching looking for others with this d...

2011-11-05T07:00:00.676-07:00

Jan
I was searching looking for others with this disease and was happy I found this site. I have read some very helpful things already. I do have a few questions that someone might be able to help me with since this is all fairly new to me. One has to do with my eyesight. On many occasions I have what I would call "out of focus" eyesight. It has nothing to do with wearing my glasses or not. It is not double vision. I was wondering if this a symptom of Meniere's or perhaps something else? My doctor went right over that symptom when I tried to explain it to him what it was. I also notice that television and computer screens do a number on me. I am trying to stay off the television and less computer time. When there is motion on the television and it starts bothering me I just have to stop. This might seem crazy but I can watch things that are NOT in HD better than things that are in HD, does that make sense? I will be interested to see if anyone can explain some of these things to me.

When my Menieres first began 3 years ago the left ...

2011-11-02T21:32:11.715-07:00

When my Menieres first began 3 years ago the left ear filled fully in an instant..just BOOM. The tinnitus started within 2 hours, and has remained constant 24/7. Violent vertigo hit 24 hours later, and the hearing also began to go and went completely w/in 2 years. Nothing, including a sac decomp. operation has stopped this vertigo, and I have attacks at least 4 times a week minimum.
The other ear had fluctuations (never vertigo)until January when it felt like it filled more, more tinnitus, and then vertigo from that ear too.
Since I had the triad plus the aural fullness from day one, there was never a question that it was Menieres.
The problem is it has never let up, and is worsening.
When your eyesight, hearing, balance and brain (from vertigo) are all effected together, it makes it extremely difficult to handle most any job, if you can still work at all.
Very frustrating how little the Doctor's can do for you.
Like anonymous above, I have drastically changed my diet..including no alcohol, pop, diet products, etc. I use air cleaners in my house & I never stop trying to find what can make a difference for me.
Most of the time the changed & low salt diet seems to help, other times I think the Menieres just has a mind of it's own regardless.
I agree that we have to take dealing with this disease into our own hands, and figure out what helps us each the most, and apply it to our lives.
I do worry for the future, but take each day as it comes, and hope the hearing lasts in my right ear at least.
I can honestly say though that if it weren't for the Valium & anti-nausea meds I can take when an attack hits, I think I might have lost my mind by now. Vertigo attacks just wear you down.

I have faith...I will outlast this damn disease.
Everyone hang in there!

I completely understand the anxiety and depression...

2011-11-02T19:15:32.829-07:00

I completely understand the anxiety and depression, the wondering if it will only get worse, and how can I live like this. I have tinnitus in both ears; like most of you, it's a higher frequency in my left ear but much more manageable in that ear. My right ear has a lower frequency and I get much more fullness in that ear as well. I also get a lot of hearing loss when the fullness hits. Initially when the fullness and tinnitus was bad in the right ear, I knew a vertigo attack was not far away. However, I've recently had 2 full vertigo attacks and the tinnitus and fullness was not too bad in the days leading up to the attacks.

My biggest frustration is the doctors that say, "We don't know what caused your Meniere's, we don't know exactly what's happening in your inner ear except that it's malfunctioning, there's not much that we can do to treat the symptoms (except for when the vertigo gets worse - all of which have variable success and some leave you deaf in that ear), and there's no way you can find the triggers." That is NOT ok. It's not ok for me, and I'm sure many of you feel the same way. They say no alcohol, no caffeine, no nicotine and keep a low-sodium diet. I haven't had a drop of alcohol since June, no coffee or caffeine in over a year and no nicotine in over 2-years. My sodium intake is under 1,000 mg most days. Those things have not reduced my symptoms at all. Zero. Nothing better. In fact my symptoms have gotten much worse over the past 6 months.

All I can say is keep trying... and take as much on yourself outside of the doctors as well. Try to figure out the triggers. I keep a very detailed chart of everything I eat, how much I sleep, environmental factors, stress factors and I rank my symptoms on a scale of 1-10 for tinnitus, fullness, and dizziness on a daily basis. I also seem to have a lot of mucus and sometimes get headaches so I note those items too. Sometimes I think I've found something and go back a few months to see if there is a correlation. It's been helpful for me.

I've tried to learn what others have found as triggers and done everything I can to eliminate and test those factors ... remove amalgam fillings, tested for mercury poison, tested my condo for mold, changed my soaps and cleaning products, stopped having my clothes dry-cleaned for a period of time, tried taking a variety of different supplements. ... I'm currently working with an acupuncturist, and a chiropractor, and a natropath doctor who has me on a very restrictive diet... I'm now gluten free, sugar free, and dairy free among other dietary changes. I eat a lot of protein and green vegetables even for breakfast. I'm trying to get my body and organs as healthy as possible to fight whatever is going wrong with my body. I'm also doing things to try to remove any toxins in my body.

There are days when I'm so frustrated having tried so hard to find answers to this, and the doctors can't give me any real direction or any answers period ... and still feeling like shit, missing so much work while working for a not-very-understanding boss. It is depressing sometimes. But we have to take it upon ourselves to figure out how we are going to make the situation best for us - even when there doesn't seem to be a clear path. I'll post some of my findings if you are interested. And keep you posted on whatever learn. I do feel better with the diet I'm on, exercising in the morning, and trying some relaxing/stress reducing techniques at night; I'm also taking an extensive supplement regime; as well as acupuncture and colonic treatments. Some have found a correlation to the curvature spine and Meniere's; therefore I've been seeing a very good chiropractor. All of this is driving me to the poor house, but who among us wouldn't spend every penny they have to get some relief of these symptoms.

Keep the faith!

Anonymous, try to look at it this way: All "p...

2011-10-31T09:39:01.762-07:00

Anonymous, try to look at it this way: All "progressive" really means is that the disease will change over time. Meniere's doesn't seem to follow the same progression for any two people, so you might have a less severe experience than many of the folks on this blog. I hope that's the case for you. Keep pushing your doctors and looking for more solutions. A lot of the relief I've found has been at least partly due to conducting my own research and pushing my doctor for more answers.

Keep the faith. You can make it better than you feel right now.

@John H, love the poem. LOL! I've also got tw...

2011-10-31T07:35:56.560-07:00

@John H, love the poem. LOL!

I've also got two distinct sounds in my ears. A rushing dull roar in the left ear (the "bad" one) and a high-pitched whine in the right ear (the "good" one). Sometimes the one on the left is loud enough to drown out the whine on the right, but not always. It's discouraging.

My tinnitus is worse with fullness too and around ...

2011-10-31T07:01:23.346-07:00

My tinnitus is worse with fullness too and around the attacks. It's really getting to me right now, although my vertigo is in 'remission' or whatever. Tinnitus is the first thing I hear when I wake and I just can't take my mind off it (always listening to see what its doing). However, I do have a hearing aid which does help a lot. I'm really upset and confused about what will happen in the future with my tinnitus. Will it only get worse and worse, better, or stay the same? Last time I went into remission it did take a while to settle right down to the point where it didn't bother me at all, so maybe it will again (hoping).

I assumed that tinnitus was from hearing loss and would only get worse with worsening hearing, but then not all deaf people have it. The Italian doctor (mentioned on here) says the tinnitus is not from hearing loss, but from inflammation and swelling. I hold onto this, as I don't think I could take the really loud T on a permeant basis. Hopefully in the future there will be treatment for this.

Right now in Ireland there is a new product in clinical trials called mutebutton, its similar to TRT, but also uses touch (via the tongue). The brain is supposed to learn how to filter out the phantom sound and it looks promising.

I don' t know about anybody else but I find there is so much conflicting information about menieres out there. Some say its progressive and only gets worse in time and others say it gets better. For me, to say its progressive sounds like its something thats going to result in death, it just sounds so grim. If it only ever gets worse all I can say is that I have a pretty miserable future ahead :( . I'm only 24 and have the rest of my life ahead of me. I'm training to be a Pharmacist. Does this mean I won't be able to have a career (wasted 5 years studying) and children. I'm sorry I'm ranting, I just get so angry that I have this at such a young age. I really feel like it has ruined my life, everybody around me is normal and I'm like this! I have so much anxiety and depression right now it's untrue.

hello i can think of another triad in reference to...

2011-10-31T02:52:02.693-07:00

hello
i can think of another triad in reference to menieres: horror show, evil and disturbing.
regards
ali

I have experienced at least two different types of...

2011-10-30T21:32:31.619-07:00

I have experienced at least two different types of tinnitus. The first type developed in my 'good ear' after acoustic trauma in my teen years. It is a 'thin' narrow frequency high pitched whine that results from specific high frequency hearing loss. After Meniere's developed in my other ear a similar high frequency whine developed that I assume is also the result of nerve deafness at certain frequencies. I can hear this type of tinnitus in both ears when I am feeling 'normal'. When aural fullness develops the quality of the tinnitus in the Meniere's ear changes and becomes more of a 'rushing' fullness. The 'thin' whine is overwhelmed and lost in the dull fullness of the plugged ear. I wrote a little poem several years ago about my tinnitus.

A whistling in my head
Until the day I'm dead.
Will it drive me mad
Or just forever sad?
For all that I don't hear
Is eternal in my ear,
In that never ending squeal
A bummer of a deal.

Tinnitus seems to go hand in hand with the aural f...

2011-10-30T16:59:26.117-07:00

Tinnitus seems to go hand in hand with the aural fullness for me. And it certainly does drive me crazy when I'm having a bad day. Stress, lack of sleep, allergies... it doesn't take much to make the pressure rise in my ears, which also seems to make the roaring/ringing louder and more insistent.

Just recently I started having tinnitus in my "good" ear, which is unnerving. I keep wondering whether that means eventually I will start having more Meniere's symptoms that are caused by the vestibular nerve on that side, now that the one in my bad ear has been cut.

:(