Meniere's?

[Rubiegem8280]

I guess this is a question for those with Meniere's disease. Sorry if I mispelled it! And sorry if I get confusing! What is Meniere's Disease Like?? How did you get your diagnosis? How long did it take? Did the hearing problems come and go? Did you have hearing loss from other sources in addition to the meniere's?

I first noticed I had lost hearing in 06 when my family came to me about my "what??" questions all the time in conversations. It began in 05, we think.... my senior year of nursing school.... I got dx'd 2 to 3 years ago with borderline mild to moderate loss, which we found out is from mitochondrial disease. Last fall I had an episode (not the first) where I was at the audio cause it felt like it was worsening but during my audiogram while with the headphones on I had really bad vertigo and thought I was going to fall over but it cleared and we continued and she said it was back to baseline and ok...... so I brushed it all off and went about things. Then this March I had an audiogram cause I was really bad and they said mechanical loss and my ENT thought I had Cochlear Otoschelrosis and sent me to Boston who then said no nothing wrong past my previous loss but its not making sense but need a CT and I had another of those episodes with the Audio only worse this time and nearly threw up with the headphones on. Since coming home someone with Meniere's said they thought I should ask my ENT here about it. I am having a lot of little dizzy spells since that last vertigo episode, hearing is up and down the last two weeks and over the last two months a lot of pain and pressure in both ears. I am totally confused. I have had two more episodes of real vertigo too and have had it off and on for two years but thought it was due to something else. I have also over the last 5 months found myself having what I think is nystagmus when overtired or driving a lot and tiring my eyes... is that a symptom? Its like my vision rapidly jerks to the left repeatedly until I just go to bed or something several nights a week. I am starting to feel nuts! :roll: This is all very new to me and I am not sure if it is all in my head or I am just going insane from my day to day stressors! any advice would be appreciated!

 

[Bottesini]

Get checked for a brain tumor.

 

[Rubiegem8280]

Get checked for a brain tumor.

I had the CT on Monday, I would imagine I would have heard by now if it was a tumor! LOL I would rather think I was nuts than that!

 

[Hollykins1]

I've been diagnosed with Meniere's. There is a good forum/board for it by the way.MENIERES.ORG -- Coping support site for Meniere's Disease. You are not alone!

Meniere's is not fun. I have episodes of vertigo, nausea, sweating, ear fullness, and my tinnitus goes into hyperdrive. Then there are the "just dizzy" days. My hearing fluctuates. My bed spins like a carnival ride.

The thing is, though, you should be evaluated by an ENT ... preferably a neurOTOlogist. Notice the OTO in that - a nuerotologist is a doctor who is both an ENT and a neurologist. They should do tests like a CT scan, MRI, VNG test, etc.

 

[Bottesini]

I had the CT on Monday, I would imagine I would have heard by now if it was a tumor! LOL I would rather think I was nuts than that!

That's good. I believe you forgot to mention it in your first post.

I don't think nystagmus goes along with Meniere's and with all the other symptoms, it does point to a brain tumor.

So, lucky your doctor's are aware and checking.

Although nystagmus can go along with vestibular imbalance and be present in acute attacks of Meniere's

 

[Hollykins1]

Well, nystagmus happens during a vertigo attack, but I'd be concerned for it to be happening other times.

Many people who have been diagnosed with MM (Meniere's) sometimes really have MAV. - sorry don't know the exact words for that acronym. It has to do with migraines which are not just headaches! Lights and driving at night can be difficult.

Again, I am NOT an expert. Check out the Meniere's forum, and by all means keep at it with your ENT.

 

[Rubiegem8280]

May I ask what VNG is? I am in Maine and I am not sure what have a Neurotologist up here..... I had to go to Boston just for cocholear problems.... The weirdness is that on scans with the audiologist at Mass Eye and Ear they said that I had nearly no hearing on the pure tone audiograms but the computerized scans were normal, except she told me the cochlear function scan of my right ear was questionable. Which was why I needed the CT. Then the ENT said nothing showed up but I did have the moderate loss from mitochondrial disease. But neither acknowledged the episode where I nearly lost lunch on her and thought he room launched into outerspace with me in it. My ears hurt like someone was stabbing me in them and felt like I had had inner ear infections for months. (got one week off and back to pressurized) And the audiologist was rough with them. They are still sore two week later! All I know is I feel like I am nuts being so dizzy all the time now. SO I figured it couldn't hurt to ask.

 

[Hollykins1]

Vestibular testing, which includes what is called a caloric test. Here is a link: VESTIBULAR TESTING

You'd probably have to go to Boston for a neurotolgist. Mass Eye and Ear is supposed to be top notch.

Keep at your ENT, as you may well have something different. If you don't like or get answers with that ENT, find another.

The thing is, in the end - Meniere's is really a collection of symptoms, and it is often diagnosed when all other things have been ruled out.

 

[Rubiegem8280]

Vestibular testing, which includes what is called a caloric test. Here is a link: VESTIBULAR TESTING

You'd probably have to go to Boston for a neurotolgist. Mass Eye and Ear is supposed to be top notch.

Keep at your ENT, as you may well have something different. If you don't like or get answers with that ENT, find another.

The thing is, in the end - Meniere's is really a collection of symptoms, and it is often diagnosed when all other things have been ruled out.

Wow kind of looks weird but fun and fascinating all at the same time.... I have a follow up with my ENT up here to ask him about all that stuff since the ENT at MEEI didn't ask to follow up. Can't hurt to just discuss it with him. All I know is I am still not hearing as well as I had before. And I am still having dizziness and some vertigo. He knows what he has done to my sinuses and my ears, so he would be the one to know what to do from here. Thanks for the input!

 

[AndyE9503]

Take a look at your diet. You may be eating too much sodium. I started having vertigo problems about 8 years ago. The ENT told me to lower my intake and the problems are managable now. But I have to stay away from resterants and stuff like that. The first episode of vertigo I had was at work while standing on the top of a ladder. The fall caused me to miss work for a while and my back still gives me problems. As for the rest of the stuff, you just get use to it. Nothing can really be done so you just have to find ways to cope with it.

 

[Rubiegem8280]

Take a look at your diet. You may be eating too much sodium. I started having vertigo problems about 8 years ago. The ENT told me to lower my intake and the problems are managable now. But I have to stay away from resterants and stuff like that. The first episode of vertigo I had was at work while standing on the top of a ladder. The fall caused me to miss work for a while and my back still gives me problems. As for the rest of the stuff, you just get use to it. Nothing can really be done so you just have to find ways to cope with it.

Wow, sounds like it could be really dangerous if you aren't aware of yourself. I have just had falls into a wall, tripped over myself mostly. Most of the dizziness I find to be while sitting or laying down to be the worst. After I have stopped moving. I have been a clutz most of my life so bruises are nothing. I saw in another post topic someone is going for gentamycin injections? I was told never to have that med? Are there treatments out there for you at all? I have nerve problems from my mitrochondrial disease already and have to use a cane sometimes.... Seems like this disease would be really bothersome for some people. I know the vertigo alone with my hearing is pretty annoying.

 

[Hollykins1]

Diet restrictions can certainly help, especially sodium and caffeine. Then there are those that feel that certain foods trigger it. Stress can trigger it.

I'm not one who prescribes to the "just have to live with it". There are medications that can help, treatments, etc. But it is true, there is no cure, and not every treatment works well for all.

Right now, I am doing a low sodium, low caffeine diet, with diuretics. It's not working all that well so far - but we'll see.

Yes, sometimes gentamycin treatments are used. It is a toxic to the hearing nerves and is a treatment reserved usually for when others things have not worked. Some of the treatments can get pretty invasive and drastic.

But take one step at a time - you may not have Meneire's! But I do feel you need to see your ENT, which you are going to do. That's the correct and best next step.

 

[Bottesini]

Wow, sounds like it could be really dangerous if you aren't aware of yourself. I have just had falls into a wall, tripped over myself mostly. Most of the dizziness I find to be while sitting or laying down to be the worst. After I have stopped moving. I have been a clutz most of my life so bruises are nothing. I saw in another post topic someone is going for gentamycin injections? I was told never to have that med? Are there treatments out there for you at all? I have nerve problems from my mitrochondrial disease already and have to use a cane sometimes.... Seems like this disease would be really bothersome for some people. I know the vertigo alone with my hearing is pretty annoying.

Gentamycin is used to deliberately kill parts of the inner ear to alleviate the dizziness of Meniere's. It is injected through the eardrum and left in the middle ear for about half an hour.

As for the dizziness being worse when sitting or lying down, that is often Benign Paroxysmal Positional Vertigo, which I don't believe is related to Meniere's/

 

[Rubiegem8280]

I saw my ENT up here yesterday morning. I was careful not to point fingers and just explain what I have been experiencing. I gave him an MRI from a year ago and the CT from a little less than a month ago and answered his questions. I did not mention any possible dx's and let him take the lead on this. He has ordered an allergy tests and he wants me to come in the next time I can get an audiogram while feeling like I am being tossed "underwater" with pressure on my ears. He is fairly sure it is cochlear hydrops, a form of Meniere's. He wants me to follow a low sodium diet (which I am already) and may start with hydrochlorthiazide (which I was on for two years after having PIH during my daughters pregnancy that never went back down). He is also going to do a whole allergy testing pannel on me for triggers. He wants to get the clinical proof on paper and thinks I had it back in Boston based on my experience there but they ignored it and never wrote it down.. so we have to work twice as hard now to catch it on paper. Then comes finding the right treatment. But I do have some permanent loss already to contend with... so the process begins? Or something like that? Or maybe we find another answer along the way.....

 

[TXgolfer]

I saw my ENT up here yesterday morning. I was careful not to point fingers and just explain what I have been experiencing. I gave him an MRI from a year ago and the CT from a little less than a month ago and answered his questions. I did not mention any possible dx's and let him take the lead on this. He has ordered an allergy tests and he wants me to come in the next time I can get an audiogram while feeling like I am being tossed "underwater" with pressure on my ears. He is fairly sure it is cochlear hydrops, a form of Meniere's. He wants me to follow a low sodium diet (which I am already) and may start with hydrochlorthiazide (which I was on for two years after having PIH during my daughters pregnancy that never went back down). He is also going to do a whole allergy testing pannel on me for triggers. He wants to get the clinical proof on paper and thinks I had it back in Boston based on my experience there but they ignored it and never wrote it down.. so we have to work twice as hard now to catch it on paper. Then comes finding the right treatment. But I do have some permanent loss already to contend with... so the process begins? Or something like that? Or maybe we find another answer along the way.....

It's extremely hard for them to tell what works and what doesn't as far as vertigo. Mainly because the vertigo attacks can come and go for no reason at all. I have not had a major vertigo attack since 2005.......and I am doing nothing to prevent them. I also didn't have any (major) between 2001 and early 2004. But 2004 and 2005 I had probably 50 major attacks including one that lasted 5 days.

By major I mean unable to stand and lasting longer than 10 seconds. Minor (to me) are the little 5 second attacks...not that those are fun. Also the days where you feel like you just got off a boat......those are no fun but pretty minor. When I have the boat feeling it usually seems that the air pressure is very low. Doctors are still researching that connection I am told.

 

[Rubiegem8280]

It's extremely hard for them to tell what works and what doesn't as far as vertigo. Mainly because the vertigo attacks can come and go for no reason at all. I have not had a major vertigo attack since 2005.......and I am doing nothing to prevent them. I also didn't have any (major) between 2001 and early 2004. But 2004 and 2005 I had probably 50 major attacks including one that lasted 5 days.

By major I mean unable to stand and lasting longer than 10 seconds. Minor (to me) are the little 5 second attacks...not that those are fun. Also the days where you feel like you just got off a boat......those are no fun but pretty minor. When I have the boat feeling it usually seems that the air pressure is very low. Doctors are still researching that connection I am told.

I am really hoping to find something.... I have been having attacks for months now... the little 5 seconds to several minute ones I have daily, most of the time I just acknowledge them and wait to pass before taking my next step (hold onto something). But the bigger ones.... they range from I have fallen into walls, which I still consider minor, to in the audiologists office it felt like the booth with me in it was launched into space and I could not find the floor or seat under me and I was going to throw up and the effect took a week to wear off completely though the episode was hours only. And that was the worst one. But I have something I guess more major once a week right now (or more). Something where I can not stand and I may throw up and I am spinning out of control (or it seems). But the ear infection pressure sensation is all the time and still no infection. Have you ever noticed elevators bugging you? They all seem to effect me now....

 

[TXgolfer]

I am really hoping to find something.... I have been having attacks for months now... the little 5 seconds to several minute ones I have daily, most of the time I just acknowledge them and wait to pass before taking my next step (hold onto something). But the bigger ones.... they range from I have fallen into walls, which I still consider minor, to in the audiologists office it felt like the booth with me in it was launched into space and I could not find the floor or seat under me and I was going to throw up and the effect took a week to wear off completely though the episode was hours only. And that was the worst one. But I have something I guess more major once a week right now (or more). Something where I can not stand and I may throw up and I am spinning out of control (or it seems). But the ear infection pressure sensation is all the time and still no infection. Have you ever noticed elevators bugging you? They all seem to effect me now....

Elevators are bad at first but you get used to them. My most hated activity is the barber chair. I keep my feet on the ground and that helps. Surgery really helped the fullness sensation for me.

As for the big attacks I never found anything you could do. When they were frequent I just tried to make sure I had somebody around that knew what to do...... (Usually my wife) Luckily my majors normally happened at home. only a few in public. I stayed very active..... The key is to keep doing what you do and let the attacks happen when they happen. If you stop doing what you like to do then you get to deal with depression and grieving for the loss of those things in addition to Meniere's. That's my opinion anyway..

 

[mizwytch]

Hey Rubiegem8280,
I saw your post over on the adjustment to late onset deafness thread and had asked the question about this meniere's thing. Then I saw this thread and I guess this answers my question I posed to you...well...sort of anyway. LOL This disorder/disease sounds about as confusing as anything could be. I hope things do get better for you though...and I hope there is a doctor who can figure out just what the hell is wrong and maybe give you some relief!

 

[ncmacasl]

My wife has it. Had Shunt surgery at UNC-CH a few years ago. helped a lot. but she still has some symptoms and attacks. much less than before. it helped. she still takes meds to help control it.