Meniere's disease...Anyone have any info on this condition...

[deeds]

Dr did mention to me something about crystals and vertigo......Did a tapping around my head area and said that this might help with moving the crystals back to place which would help with vertigo?....

[Zapruder]

I was diagnosed with Meniere's Disease in July of 2010.

My first two attacks of vertigo occurred while at work and caused me to vomit to the point of passing out in the bathroom.
I was taken to the ER where I was given anti vertigo medication.

Following my initial two attacks I was sent to an otolaryngologist (ENT) and given a battery of tests. After those were completed I was diagnosed with the disease.

Now 4.5 years later the hearing in my right ear that Menere's Disease has affected is now destroyed.

I can now sense a vertigo attack coming extremely well and can medicate quickly usually avoiding a full blown situation occurring.

The single best medication for Meniere's Disease is meclizine which is simply motion sickness medication. Meclizine acts as a vestibular retarder thus halting all but the most severe vertigo attacks.

Meclizine is sold over the counter and is extremely inexpensive. I buy it in 100 count bottles for 3.50.

There is no cure for Menere's Disease but once you live with it for awhile you can minimize it's affects.

[deeds]

wondering the impacts on your life.....r u able to function somewhat normally........

[Zapruder]

Originally Posted by deeds

wondering the impacts on your life.....r u able to function somewhat normally........

There are times during what is called a Meniere's cycle that cause me to feel unsteady on my feet. This is not from full blown vertigo but what I call a lower level balance issue brought about by the disease.


There are other times where I have ""sneak attacks"" of vertigo where the attack hits me like someone took a baseball bat and knocked me down to the ground.

During one of these I have no perception of up and down or left and right so I fall to the ground. Thank God I have not been in a position to where one of those attacks threatened my life due to where I was or what I was doing at the time of the attack.

The vertigo attacks brought about by Meniere's Disease are based on conflicting signals. One set of signals are being sent to your brain from your eyes telling you which way is up, down, left and right. The other set of signals are being sent from the inner ear in the cochlea. When excess water is built up on the main auditory nerve the cochlea cannot function correctly thus causing conflicting signals to be received by your brain. Your eyes are sending correct signals and your affected ear(s) are sending another set of signals that are in conflict. The result is a vertigo attack.
In every Meniere's patient when these signals are in conflict the patients eyes dart back and forth uncontrollably thus causing you not to be able to see. The side effects of this are most unpleasant such as extreme nausea, uncontrollable vomiting and diarrhea.

If a vertigo attack of that severity level is reached the only thing you can do is either pass out and wake up in hopes that the attack has passed or in most cases you are taken to the ER where strong anti nausia/anti vertigo medication is given via an IV.

I have had one of these severe attacks in the past year (2014).

With each passing year it appears that my severity level of Meneire's is waning which is observed in many patients that have suffered with it for quite a long time.

The bottom line is I don't wish Meniere's Disease on my worst enemy.

[Rusty Avocado]

I have it too. I wouldn't wish it on my worst enemy either...

After 6 months of no attacks I have had a series of 4 attacks over the last 4 days. I get the really bad rotational vertigo, vomiting, whole 9 yards. Also I have had constant 24/7 tinnitus for 2 years now. Fun stuff! To the OP- I really hope this is not what you have. It is hell.

I live a normal life in between attacks, still work full time etc. But the attacks come out of nowhere so it is very anxiety inducing. My last one was at work and it is not only embarrassing but it is so uncomfortable. My husband had to pick me up because you can obviously not drive during an attack.

[Everdeen]

I have Meniere's Disease. It has nothing to do with crystals in your ears; that's a different disorder and many doctors don't know what they are talking about. You need to go to an ENT who has experience with Meniere's. One of the best places in the US to go for treatment is the House Ear Institute in Southern CA. Dr. Dewberry (sp?) is a leader and pioneer in the field.

It is extremely important that you go get properly diagnosed. They will send you for an MRI to rule out a tumor (rare). You will suffer hearing loss if you do not deal with it early and maybe even regardless of what do to mitigate it. They will check your hearing. I did not lose a significant amount of my hearing permanently until I had had the disease several years, but during the first few years it would wax and wane along with the tinnitus. Now I have permanent hearing loss and tinnitus.

One of the best informational resources is at menieres.org. Because of the rareness of Meniere's, it is difficult to find a qualified practitioner. There are several people who have come up with protocols of their own that are highly successful with some of the members. Not one regimen works for everyone, but one of the protocols brought me back from the dead. Some of the people can appear very whiny, but I get it. When you are that kind of sick, it's miserable beyond the comprehension of anyone who has never been through it.

My last attack was two days ago. I find that the best thing for me is to take some Valium before I start vomiting and just sleep through the attack. I also have phenergan to help with the vomiting. They may prescribe you Meclizine for the vertigo, but I still prefer the Valium. It helps calm down the vertigo and, like I said, puts me out. Depending on where you live, you may have a hard time getting a prescription for it. My ENT will not prescribe it, but I have another doctor that will. Sometimes, if I feel like I am getting dizzy, I can take half a pill and it manages it pretty well. If you tend to have an addictive personality, you may want to stay away from Valium or have a close family member keep them safe.

There are several disorders that give you vertigo, so please, see someone who is an experienced practitioner. If you are diagnosed with it, DM me and I can give you more information that would likely help.

If you have not yet been diagnosed with it, get long-term/short term disability insurance NOW (you should get it anyway). The people that I know that have been completely disabled from it fought with Social Security for years before they were able to get their claim paid. Once you are diagnosed, you may not be able to get it and if you do, there will likely be exclusions.

[Emlees]

I was diagnosed with Meniere's in October. I was my car and had no idea what was happening, I thought I was having a stroke, I had to pull over and call 911 from my car. At first they said it was BPPV but then the roaring in my right ear started and they diagnosed it as Meniere's.

I agree with those who say they wouldn't wish this on anyone.

I thought it had gone into remission around November but a few weeks ago it came back and got a vertigo attack in the middle of work. It was awful, they called an EMT and my husband had to come get me. Now I am always stressed and in a state of panic over when the next one is coming. The fullness and roaring hasn't gone away but when the roaring gets really loud I try to take a half Dramamine to try to lessen the severity of a vertigo attack. I can't take the Valium during work because it makes me too drowsy. I'm in a new job and on probation for a year plus I travel over an hour to and from work between driving and public transportation.

I went back to the ENT and told her at this point I would rather lose the hearing in my ear then have to deal with these vertigo attacks.

They are going to do the steroids in my ear next week. Has anyone had this done and can you tell me your experience and what to expect?

[GusLevy]

I suspect that I have Meniere's Disease which is why I searched for this topic. Am glad to have found this thread as I will research the House Ear Institute here in Los Angeles which was mentioned in an earlier post.

My symptoms began a few years ago - I had a sinus infection which left me with a deteriorating loss of hearing in my left ear and tinnitus. As of now, I prob have less than 5% hearing in that ear and the tinnitus is full blown. In addition, early this morning, as I began to eat my breakfast I was hit with a case of severe vertigo that made me extremely nauseous, disoriented and wanting to vomit. Fortunately my intuition told me to lay in bed with my eye shades on without inducing the vomiting...crashed for about 3 hours and felt better when I awoke.

I try to keep my sense of humor about the bad things that inevitably occur in my life and when I read of those who have Meniere's who wouldn't wish it upon their worst enemy my initial thought is - hell no, I do wish this condition upon all the inherently horrible people out there because it really sucks.

I'm an INTJ so I accept things for what they are: I truly believe that there is a slight chance that I will prob end up with Depression or at least devolve into a personality that is on the Lunatic fringe. The tinnitus f'ing sucks. Nonstop ringing in the ears for me is a bit ironic because one of the things that I enjoy most in life is to sit outside listening to just the silence and soft sounds of nature. Being in rooms full of chatter is a personal hell.

Anyhoo, obviously Meniere's is an extremely rare condition and one without a cure...so I got that going for me. If there are any out there who have had bad cases of Meniere's and have had simple processes and/or medication which have helped meaningfully I would love to, well, hear them...