Anyone else have Meniere's disease? (1 Viewer)

[Lucia Duran]

My mother in law has it and is not able to travel much because of it. She no longer enjoys going to movie theaters and cannot watch movies at home unless the lights are on. fast movement (dancing, turning to quickly, driving and flying) all cause her to get so sick.

She is currently seeing a doctor and when she HAS to travel, she uses this special medication that she applies to pressure points behind her ears to help her get through the trip.

 

[ChristopherG]

Well,

It is looking more likely that I have some form of Meniere's...my vertigo disappeared over a year ago with no reappearance, so that's good. But, I now have a "constant" fullness in my right ear (popping as if I were on a an airplane) with a noticeable amount of hearing loss which all occurred in the last 6 weeks. Going to ENT and all that entails, and now am getting ready to be on the salt restricted diet and diuretics....I feel crappy about it but when I think of all the worse things people go through, I try to keep perspective. So, any further recommendations on a low salt diet...? ugh

 

[Bob McLaughlin]

Meniere's rears its ugly head, 2 years later!

Wednesday I got to work, had a quick meeting, started feeling dizzy when I got back to my desk. Next thing I know I'm throwing up in the men's room, unable to stand up, whole room spinning, etc. I can't open my eyes because the tile patterns on the walls and floor are driving me crazy, but I can't stand to close my eyes either. Finally someone else comes into the men's room, I tell him to call security. This was a pretty major Meniere's attack, a bit worse than the one I originally posted two years ago (almost to the day!) Man, that ambulance ride was a killer! I got taken to a hospital, pumped full of anti-nausea meds and then Valium, slept a couple hours, wife took me home. Today I'm back at work. I have another appointment with my ENT doctor set up.

In the meantime you know the drill: no caffeine, no alcohol, no chocolate, no MSG, no aspartame, and cut my sodium by 50% or more. That last one is a killer. I've been eating steamed vegetables and rice and fruit for 3 days now. Fruit's not bad but man I would like some ham and bacon, guess that's not gonna happen. I'm tired because I am used to one serving of caffeine in the morning (it worked for the last 2 years but now I just don't want it).

I think last time I started thinking it was a one-time fluke, this time I've learned my lesson.
I'm going to really try to jump into the low-sodium lifestyle this time around. I think I let bad habits creep back into my life because I wasn't having attacks. Also I have to get some of my prescriptions updated, I had 2-year old Meclizine and Promethazine pills that probably aren't any good any more. I want to keep the Valium handy too, it seemed to help me more than anything else at the hospital.

 

[ChristopherG]

Bob,

Sorry to hear that this thing has decided to return. I dread the thought of it ratcheting up in my own situation. Good luck and keep those meds close.

 

[Bob McLaughlin]

I may have gone too far in cutting back my sodium, yesterday and today all my muscles were sore! I read somewhere you need to have at least 500mg of sodium per day, and I think I may have not been getting enough salt! I really was trying hard to avoid any salt because I didn't want the dizzy spells to come back. It is weird how fast I got used to the taste of low-sodium foods, I tried a regular cheese curl yesterday and the salt practically burned my tongue! Well, I guess now I have to make sure I at least get 500mg.

 

[Randy Tennison]

Wow, really sorry you had another attack. Knock on wood, I haven't had one in 4 years, although I had a small dizzy spell a couple of months ago that I think was more sinus related. It was terrifying for a few minutes, though.

I dread the thought of ever going through that again. I'm praying right now that you don't suffer anymore attacks!

 

[Bob McLaughlin]

Thanks Randy, I appreciate it.

My ENT doctor said to keep doing what I'm doing, although he said I could become progressively less strict with sodium too see what my tolerance levels were. He also gave me some exercises to do that might help with balance and circulation.

 

[acujen]

Okay, so I have no idea about what this forum is really about, but I wanted to tell you guys that it was so refreshing reading your posts about Meniere's. I've been researching the topic like mad (and kicking up major anxiety) to understand what I might be in for when I stumbled across your postings. You are all like breath of fresh air and hope (especially you Randy), as all the other health boards are so full of doom and gloom. Bob, can you tell me about the "exercises" you received for balance?

 

[Bob McLaughlin]

Hi Jen, and welcome to the Home Theater Forum. This After Hours Lounge has helped countless people over the years on a variety of topics so large I can't even begin to list it here. Anyway, on to the Meniere's discussion!

Here are the exercises. You should not do these if you already feel dizzy. Also, if any of these makes you start to feel dizzy, stop immediately. I do them when I've spent a lot of time not moving--such as days where I spend too much time in front of the computer, and also days where I do a lot of driving. The idea is that it gets your inner balance systems used to movement and you will be better able to deal with feelings of being off balance. You can do these in the comfort of your home.

1. While sitting in a chair, bend forward and touch your toes 10 times, each time returning to a position of sitting up straight.
2. Now go from a sitting to a standing position 10 times.
3. Sit comfortably. Turn your head from left to right 10 times. Start out slowly but try to increase your speed over time.
4. Sit comfortably. Move your eyes from left to right 10 times. Start out slowly but try to increase your speed over time.
5. Get a ball the size of a tennis ball. Sit and stare up at the ceiling. Move the ball back and forth between your hands 10 times, holding your hands up towards the ceiling. Eventually, try tossing the ball instead of just handing it off to the other hand. You can also bounce the ball off a wall, above your head, from one hand to the other.
6. Walk up and down a small set of stairs several times. Stairs can often trigger vertigo so it is important to be careful doing this!

That's about it. You can add your own variations. The idea is to gradually be able to push yourself into more situations that might put you off balance, and your brain will re-wire itself with your balance system and you will be able to overcome these situations.

I also have some great news that I hope is encouraging to you--I have been Meniere's attack-free since July 2009! Also I have greatly reduced the feeling of fullness in my ear--almost completely eliminated it. I attribute this mostly to my change in diet. It wasn't easy but boy, has it been worth it!

Here is what I cut out entirely, in order of what I feel is most important:
Aspartame and any other artificial sweeteners
MSG (a preservative)
TBHQ (a preservative)
Caffeine (this was tough, but it can be done)

Here is what I reduced my consumption of:
Sodium - cut by 50%
Alcohol - no more than 2 drinks at a sitting
Dark Chocolate - contains caffeine

It helps to start thinking of aspartame, MSG, and TBHQ as poisons, (even though they really aren't), if you have Meniere's, these are not things you want in your body. Caffeine is a stimulant that can trigger or worsen episodes. Excess alcohol can make you dizzy.

Reducing sodium is the toughest thing (it seems like everything has it!) but since sodium makes your body retain water, it increases the pressure in your inner ear. The easiest way to reduce sodium is to make more foods from scratch, stop eating frozen microwave meals, and reduce the amount of dining out in restaurants. More and more restaurants are offering nutritional information on their websites, so if you like going out to eat, it helps to find which items are the safest for you to eat.

For example, I love McDonald's fries, but I found out that I can reduce most of the sodium by simply not having them salted (they will do this for you) and don't dip them in ketchup (or not quite as much!). Heinz does sell a sodium-free ketchup, by the way. As for the burgers themselves, don't get ones with cheese and bacon and sauces on them.

In grocery stores I have even found reduced sodium bacon, chicken broth, etc. Find substitutes for the things you like, rather than just trying to go without. I eat unsalted potato chips, nacho chips, low-sodium salsa, etc. When in doubt, eat fruit! It really helps if you know how to cook your own meals! Your taste buds change very quickly and soon you will not miss the salt.

 

[Bryan^H]

I've been experiencing bad dizzy spells since November 2008. Then, I just thought it was due to a slight cold I had. But I have had them quite frequently since then(about once a month). They don't last too long, but I have to sit down and let it pass before I'm on my feet again.
Bob, did you have a lot of ear wax buildup in addition to your symptoms? It's something I have never had before, but since my dizzy spells have started I will actually have a gob of wax fall out of my ear from time to time.

 

[Bob McLaughlin]

Yes, I have had a correlation between wax and the symptoms. I Q-Tip my ears every day so it doesn't get a chance to build up, but I do notice more of it when I'm getting dizzy spells.

If you have the insurance, definitely go see an Ear Nose Throat (ENT) doctor. They can run some tests and see if you have any hearing loss, etc. They may be able to prescribe something for you as well, and find out what's really going on.

 

[Bob McLaughlin]

There must be something about July/August, as I am feeling many of the pre-attack symptoms for the past few days. Last night I woke up at 3:00 AM and was pretty dizzy. I was having trouble standing and my eyes could not focus on an object without it moving.
 

I have had a summer cold for a week or so and that was making my ear feel congested, but I think it is all related somehow. Back to the ear doctor for me, the soonest they could see me is in 2 weeks.

 

[boxerpaws]

yep Bob.Sure do. I was doing a search for a support forum and saw your message.

It helps if someone gets what you're saying;most people i meet have no clue what i'm talking about.

I work around i but .spend most of the time at home.

How are you dealing? How is your family copiing? How are YOU coping?

When were you diagnosed.Best advice.take it easy on the bad hair days.

I got a bar for the shower and eventually a seat..also a sprayer shower head. This helps.

The thing is,be safe.A fall could be worse than the disorder itself.

I know it can be scary but you're not alone.My husband is pretty good about it.I'm not sure he understands either but at least he doesn't look at me like i'm crazy.Supportive as possible.


Consider me a friend. I know exactly what you're going through.Over time you will begin to accept;just be cautious about falls.I also put a small night light.Getting up in a dark room is a problem.Also a lot of input can throw you.Lights and sounds for instance. Find something you CAN focus on.For me it's computer unless it gets really bad.

DO what you can on the good days.Take it easy on the bad ones.

 

[Jacksonville]

Hello

My Husband was just found out this is what he has. I was wondering how long your longest attack was? My husband is on day 5 of six weeks. He has to use a walker to get around, we have a wheelchair close by just in case if it starts to go south. He has lost about 15 lbs, cuz he doesn't want to eat. If you have any tips to help us out that would be great. Thank you soo much

 

[MarDidi25]

Hi everybody. First of all, I'm sorry for the mistakes. I'm from Greece and I'm not so good in English.

Bob, I have the same problem with you but unfortunately I don't have good things to say for my case. I have the Meniere's disease for 12 years. Buzzing was the first symptom but it was not so annoying. Some months later I had vertigo, about 2 times a month, for 3-5 hours a day. It was from the worst period of my life. I really had big problem, I went to so many doctors, but they told me I should get used to it!! I finally went to a doctor who gave me a diuretic medicine that helped. I was taking it untill now, I actually stopped it about 4 months ago and I don't have problems with vertigo anymore. But the buzzing and mainly the hearing loss are the big problems for me now. I first lost my hearing from the left ear and now I'm losing it from the right one. I'm going to do a surgery and put a cochlear implant, if you have heard of it. My case isn't the best one. Sometimes it doesn't end like this. I hope you're doing well.

 

[Galarza77]

I also have manieres and the doctors should have given u some water pills .... don't know it might help u

 

[CRyan]

I just had my worst "episode" a few weeks ago. Lasted 4 days. Was pretty horrible and certainly people that have never had it don;t really understand it. It is debilitating when it is in full swing. So I went to the ENT and confirmed the hearing loss in my left ear. He has put me on a diuretic and told me to lose the salt. Of course I knew this already. He wants me to go to a specialized clinic at Vanderbilt for testing. However, I just do not see the point. It is around $2000, and as most people here have said, their is no real treatment. Anyone have any thoughts or know what this clinic could actually do for me besides tell me I have a problem?

 

[fellowsufferer]

I have Menieres Disease. It started in February 2008 with Vertigo so bad I had to go the hospital by ambulance. I was there for 4 days and they

tested to see if it was the crystals in my ear, which it was not. They told me it was probably caused by a severe inner,inner ear infection. A side

affect,which I also now have, is sudden hearing loss in my right ear. I have a constant noise in my ear like the wind or like what you hear when

you listen to a seashell. I started going to the Paparella Ear,Head and Neck Institute here in Minneapolis. I was treated first by one doctor there

for 7 months,being given one profusion, which did not help.The dizziness would come on so suddenly (the noise in my ear would stop)and sometimes lasted for a couple of hours where I would have to keep my head down until it passed. It got so I was afraid to leave the house by myself. I finally started seeing this other doctor at the Institurewho did another profusion, then steroids and finally a profusion where he actually punctured my eardrum(which did not hurt) which lasted once a week for a couple of weeks. He told me it would take a while for it to work, but it finally started to work in April of 2009. The dizziness stopped all together, but I still have the noise in my ear and my hearing has not really come back very much in that ear. I still never forget

that it could come back at any time, so I am very careful about moving my head too fast, getting up or down too fast,etc. But I can live with the noise

in my ear. I am now working again and live my life normally.

You should suggest the steroids and the profusions directly into the eardrum to your doctor.

Good luck to you.

 

[fellowsufferer]

Hi -I just replied a little bit ago abount my Meniere's Disease. Something I forgot to mention that my doctor also told me was to stay away from

all caffiene,which also means no chocolate. (Folger's coffee is 99/4% caffiene free, I drink African Red Tea which is naturally caffiene free),alcohol, very low sodium and MSG.

I never cheat on any of these things.

 

[Bob McLaughlin]

Thanks for all the responses since I last checked in. I had been doing pretty well for the past 2 years but started getting the fullness in my ear shortly after Easter. I assumed it was because I had eaten some high-sodium ham and other foods at my sister-in-law's Easter dinner, along with a lot of candy. But it still lingered on a week after Easter and I couldn't figure out why. The humidity levels had increased in Spring so I thought it could be that--it throws off your body's water levels to be inhaling humid air rather than dry air (I never have had an attack in the dry winter months). Last Thursday I had to leave work because I really felt on the verge of a full-blown attack, and I didn't want to take my valium and antivert pills at work because they make me really tired. Went home, slept 6 hours, woke up feeling a bit better.

Anyway, I did some serious detective work about my diet to see what changed and traced it back to the day I went grocery shopping (usually my wife does all the grocery shopping and she knows what foods to avoid buying). It turns out for the past 2 weeks I had been eating oatmeal cookies that contained TBHQ! This makes sense because that is around the same time I started feeling dizzy again. So hopefully that was it, maybe I can go another 2 years before an attack.