Meniere's Disease...Anyone know about this one?

[HMGar]

My husband has recently been diagnosed with Meniere's disease. It's an inner ear disorder that affects balance and and hearing. The symtoms can include dizziness and sometimes flu like symtoms. If the attacks are bad, my husband has difficulty walking and can't sit upright without feeling sick to his stomach.

He is on medication. He goes through stretches of time where he does not experience any symtoms, but then there are times where he will have attacks several days in a row.

The problem is, it's unpredictable. We've planned a Disney trip for this May/June. It's our favorite vacation spot and we haven't been in two years. I'm wondering if anybody else has experience going on vacation with a member of their family with this disease. How did you handle the dizzy spells? Did the heat and long days of walking cause problems?

We're considering a wheel chair even though dh is capable of walking on his own most of the time. I'm thinking that by allowing him to sit (especially if he's feeling tired) will help reduce the number of attacks he has or if he's dizzy, he won't have to worry about it getting worse and causing him to be unable to move at all.

Thoughts?

 

[HMGar]

I wanted to add (because I know this has been a major topic of debate on these boards) that DH will not use the wheel chair in line. We will park it and wait in the regular standby line. If his attacks are bad enough, we will be heading back to the resort to wait it out.

I was just hoping that by allowing him to sit instead of walking so much that he will experience fewer symptoms during our trip.

 

[Delaney21]

One of my friends has it and although I don't know anything about it, I know she is able to control it a lot with a low sodium diet. Has he tried adjusting his diet?

 

[HMGar]

So far the diet adjustment has just been an increase in liquids including juice and lots of water. His medications make him very thirsty.

Low sodium diet might be a good option. I'll mention it to him and discuss what we might be able to cut out in order to make a difference.

We definitely want to try as many things as possible before our trip in 90 days!

 

[rascalmom]

I have it - I was diagnosed when I was 30 and I'm 50 now. I had symptoms for about 8 years before that - it took them a long time to diagnose me. I had a rough few years - mine was very affected by hormone fluctuations. My pregnancy with my second dd was very rough.

Now that I'm at an age that my hormones have leveled out, I rarely have a problem. I do watch my sodium - that is a definite trigger for me and I can tell when I start edging close to a flare up.

I could not have done the parks back in the day when I had my worst problems. Walking around would have been out of the question, and even riding in a wheelchair would have been tough. No way I could have enjoyed any motion rides.

Movement does not trigger me - I can do RnR, Tower of Terror....even tea cups on a normal day. On a bad day, just walking can be a misery. I get so dizzy I get nauseous.

The meds do help, but they aren't a complete cure.

That all said, I do have minor balance issues from it even when I'm not feeling dizzy, so I have to be very careful. I've broken my right leg twice and badly sprained both ankles more than I care to admit. I always just thought I was a klutz - but now I know there is actually a medical reason for it.

One tip that helps me when I am having a bad flair - lemon. Not consuming it - but smelling it. I slice one in half and inhale. No idea why, but it really helps me. My doctor doesn't seem to think there is a medical reason that it would help and it may just be serving my brain as a distractor, but I am happy with even minor relief at times.

Watch caffeine and sodium.....

And good luck! Enjoy the good days - I hope your dh has many on your trip.

 

[n2mm]

One of my friends has it and although I don't know anything about it, I know she is able to control it a lot with a low sodium diet. Has he tried adjusting his diet?

My mom had it and now my adult daughter has it. She is 37 and has learned to live with it for a few years. Yes the low sodium seems to be the key to keeping the attacks under control. She use to get them often, sometimes driving and someone would have to go pick her up and leave her car on the side of the road. She recently had tubes put in her ears and that too has helped alot. Watching her sodium intake has almost stopped the attacks. She goes to WDW 2-3 trips a year (with us and her family). She still rides most of the rides, but she sits out the tea-cups now. She can still to Dumbo and roller coasters. OP, her attacks sound like the same as your DH. She would get so ill so quickly with no signs it was coming. She could not stand up. Now after the tubes and the diet change, she lives a normal life and vacations in WDW often and rides most of the rides still.

 

[PatsMom]

My brother has Meniere's. He also does the low sodium, no caffeine diet and finds that it helps. When he has attacks he literally slides down the wall until he is lying on the floor and takes his medication. Meclizine I believe. He works around heavy equipment and power tools and we worry about that. He is getting ready to have some kind of treatment that I believe kills the nerve in the ear that causes it. It leaves you deaf in that ear but he has lost most of his hearing in the affected ear anyhow.

Good luck with Disney!

 

[LockShockBarrel]

I take meclizine for a different fainting/dizziness issue. It's the same medicine that's in Dramamine. There's an antihistimine in it so it can make you sleepy, but I find that I can start with half a pill and work my way up as needed if that half didn't help enough.

 

[McDuck]

My mom and brother have it. They both avoid caffeine, even chocolate, as those trigger vertigo attacks for them. My mom can ride most things, just nothing that spins, and she doesn't like the dropping type rides. She can do Test Track fine. My brother got it set off from riding in the front open part of a watercraft from Fort Wilderness to MK, and a backwards facing monorail ride finished his day for him.

Good luck to you and your DH. Meniere's hasn't stopped my mom from having a marvelous time at WDW!

 

[A Mickeyfan]

I have Vertigo which is somewhat like what you are talking about. I can say that being tired doesn't trigger an attack on me, but going on the tea-cups will make me sick as a dog, yet I can do RnR... you can hang me up-side-down, just don't spin me. Also... if I am standing still and I look up to the sky it does it. There are times a migraine will bring it on as well.. but not being tired. I would not get the wheelchair when you get there. See how it goes with him. If he does get dizzy, you really will not be able to stay at the parks. He won't be able to do anything. I know when it hits me there, I have to get out asap. I have had attacks to the point of being thrown down by the force of the spins (nearly broke my arm in my house one time)...there are no theme parks for me with a Vertigo attack. My doc has me on meds and I have not had many attacks recently, which is why I can no go alone. Years ago, I had to have someone with me at all times, could not even drive up there alone

 

[Deesknee]

I do not have meniers, but I have migraine related vertigo. I get a wheelchair. i push it when I can, and sit in it when I need to. I wear noise reducing headset, and I find I close my eyes alot with the busy surroundings. I can't do a lot of the rides...including Peter Pan - believe it or not. Also, if you are flying, that could be a concern. Personally, I am bothered more by the airport itself than by the flying. So, I wear the noise reducing headsets there too. Even at some of the restaurants. I may look ridiculous, but I am able to enjoy my vacation.
I will say this, I can tell when my vertigo is going to increase ( i constantly have some degree of it), usually I get an aroma, or a visual disturbance. For me the aroma is fowl. It took us (my family and I) a long time to figure out it was my vertigo. The research we have found indicates most people get a warning, whether regardless of what type of "vertigo" it is. Have your husband try to be conscious of visual changes or aromas - however slight.
I too watch the sodium intake. Although with the migraine vertigo, caffeine can actually help, but not too much caffeine. I find it is a constant battle. Also, sensory elements increase my vertigo. sight, smell, sound even touch (walking on a windy day).
I wish your DH the best. It is truly an invisible disease, I have had a few years to adjust to the weird looks when I get in and out of the wheelchair, but have come to realize, people are going to judge, or just be curious. I have to do what is right for me. If your DH needs the chair, have him use it. I will warn, there are days being pushed in the chair actually increases my vertigo. Also, someone on these boards suggested to me to use the first aid areas if I need to lay to balance myself. I did that the last trip. It was nice I could give the vertigo time to resolve while my family continued to enjoy a ride or 2 then came back to get me. Good luck.

 

[HMGar]

We have decided to rent a wheel chair for the duration of our trip (just in case). DH will probably try to do the walking himself if he's feeling good. Thanks for all of the personal experiences. It will be a peace of mind to go into this with as few surprises as possible. Your input will help us be able to anticipate possible scenarios and talk about what we want to do ahead of time.

 

[cendrillon0308]

I am so glad to find a thread about Meniere's & Disneyworld. I am going this October for 4 days and am sooo excited about going but want to be smart about it!

I've been living with Meniere's since 2006 and use several tools to manage it (physical therapy, low sodium, low caffeine, & meds). I plan on riding the dark rides ( its a small world, pirates of the carribean, etc) and taking the Keys to the Kingdom tour to enjoy the experience.

I'd love to ride Tower of Terror and Rock and Roller Coaster but I'd have to be carried out by an ambulance-ick! I'll be back to post a TR.

Here's a shout out to all my fellow dizzies and our love for Disney

 

[3prettyprincesses]

This is all very, very interesting. Just this past summer I had my first ever case of vertigo. I literally woke up in bed and the entire room spun so crazily and fast! I could not get up without almost vomiting and walking was not an option, lol. My DH took me to the ER where they did tons of testing, I thought I was going to die, lol. Everything came back clean, including my brain CT scan (they were looking for a stroke!). The dr. gave me Meclizine and said that my vertigo happens from turning over in bed? Something dislodges in the inner ear and then the room spins. Took me almost two weeks for the symptoms to go away, I couldn't drive or do anything.

Now we're contemplating a Disney trip and I'm scared of what I can and cannot ride. Normally I go on everything but now I'm not too sure.

Does this Meniere's disease cause ringing in the ears? I have that almost all the time, everyday. I also find that I cannot look straight up or else I start to feel the vertigo, nor can I look completely down for too long either.

 

[sweetbambi]

The ringing in the ears--Tinnitus--is what alerted me to the Menieres and now I have had the diagnosis for 10 years. You will be discouraged when you google Tinnitus, but it's a fact and after a while you won't realize you have it unless you're in a really noisy place such as Disney. Always make sure the speaker is on your good side, though. Although everyone doesn't receive the same treatment, I take Meclizine on an as needed basis, a daily diuretic, xanax as needed because it's VERY important to avoid stress as much as possible.

 

[WHIT1]

My husband has recently been diagnosed with Meniere's disease. It's an inner ear disorder that affects balance and and hearing. The symtoms can include dizziness and sometimes flu like symtoms. If the attacks are bad, my husband has difficulty walking and can't sit upright without feeling sick to his stomach.

He is on medication. He goes through stretches of time where he does not experience any symtoms, but then there are times where he will have attacks several days in a row.

The problem is, it's unpredictable. We've planned a Disney trip for this May/June. It's our favorite vacation spot and we haven't been in two years. I'm wondering if anybody else has experience going on vacation with a member of their family with this disease. How did you handle the dizzy spells? Did the heat and long days of walking cause problems?

We're considering a wheel chair even though dh is capable of walking on his own most of the time. I'm thinking that by allowing him to sit (especially if he's feeling tired) will help reduce the number of attacks he has or if he's dizzy, he won't have to worry about it getting worse and causing him to be unable to move at all.

Thoughts?

I've had Meniere"s for 10 yrs now and its finally calmed down. I also go to WDW every year and I do very welln. I avoid watching spinning toys, bright lights especially blue. I wear ear protection during fireworks or any loud noise. If you don't you will pay later, like having to go home earlier from your vacation. I also wear earplanes( get these at walmart) not just any earplugs. In the plane it can be very painful. It helps keep the pressure equal in your ears. Its hard for us to open up our ears when they close at high altitudes. The old remendies don't work, like yawning or gum chewing. I also watch my sodium cause the nurse told me if I didn't I would become deaf ,since this can cause attacks. One thing your DH will welcome is your ears leaking cause this keeps the pressure from building up and causing earaches and dizziness.I also go to a chiropractor that adjusts my sinuses which helps also cause it keeps me from getting sinus infections so much. I do not take any meds and won't unless I have a relapse , but so far I" doing great. I hope he has a good ENT. My ENT went over the test with me and said this is good and this is bad and you have Meniere's and handed me a perscription and walked out on me and has been mean to me every time I went to him. He told me he felt sorry for people who had Meniere's, but would never help me. He use to be a good DR. Its a sad disease cause they don't know much about it and no one cares. Sometimes you are on your own and do your own trial and error. I wish him lots of luck and he will have a good time at WDW just stay away from alot of motion rides that really shake you.

 

[newtexan]

Are any of you posters still around? my daughter was confirmed with a case of this today. she has been going through testing, mri's, etc since december and been suffering symptoms for about two years.
our pediatric ent doesnt want to prescribe a water pill for her at this age, and he cut her back on her meclizine from 3 a day to 1, so we are at a real loss of what to do.
find a new ent maybe?
it affected her last year in school a little but she starts high school in a few weeks and we are really worried about her performance.
help anyone?

 

[geek+nerd]

This is all very, very interesting. Just this past summer I had my first ever case of vertigo. I literally woke up in bed and the entire room spun so crazily and fast! I could not get up without almost vomiting and walking was not an option, lol. My DH took me to the ER where they did tons of testing, I thought I was going to die, lol. Everything came back clean, including my brain CT scan (they were looking for a stroke!). The dr. gave me Meclizine and said that my vertigo happens from turning over in bed? Something dislodges in the inner ear and then the room spins. Took me almost two weeks for the symptoms to go away, I couldn't drive or do anything.

Now we're contemplating a Disney trip and I'm scared of what I can and cannot ride. Normally I go on everything but now I'm not too sure.

Does this Meniere's disease cause ringing in the ears? I have that almost all the time, everyday. I also find that I cannot look straight up or else I start to feel the vertigo, nor can I look completely down for too long either.

The same thing happened to me a few years ago. After three weeks of dizzy spells and thinking I had a neurological issue, I was finally diagnosed with positional vertigo. There are crystals in your inner ear that get dislodged and cause the vertigo. I finally got referred to an ENT who did some maneuver on me to get the crystals back in the canal. I had to wear a neck brace to restrict movement and sleep upright for a few days. However, I have not had a repeat incident.

 

[Jacqui8374]

I have had it for over 30 years ad bee going to wdw for about the same time. Keep off spinners and anything that goes round you just have to learn to manage it if I get an attack I go and lie down flat
Jacqui

 

[macraven]

i have meniere's, and was diagnosed 19 years ago.
usually have a bad flair up once a year where i am flat on my back in bed...
the vertigo hits me hard and all i can do is lie down.

other times during the year, i can feel it coming upon me.
start my meds right away and the attack is mild.

i take antivert 3 times a day when it hits me.
usually, i am improved after day 3.
since antivert is had to find, some substitute meclizine for it.
that med i can't take due to the inert materials.
a compound lab can make antivert with a doctor script.


i stay away from rides like the teacups.
the doctor hasn't told me to avoid that type of ride but i'm leary about triggering my condition.


i have learned to live with the tinnitus.
it has been a constant annoyance for me over the past 25 years.
bte aids does help with that ringing sound i get.


the meniere's has not interferred with my everyday life.
medicine helps it get under control very well.

many people have this and can carry on very well.
it's when you are hit hard with it, dizzyness, vertigo, nausea, you need to start meds right away and not be active.

i do stay away from salt as much as possible.
doctor started me on maxizide/diazide years ago to help me not have constant vertigo.
your body will get used to the water pill in a few weeks.

i hope things go fine with your daughter.
starting high school will be different than grade school.

maybe you could talk to the school nurse and have a special restroom pass given to your daughter if she goes on the diuretic.

if you have concerns with the present doctor's statements, it wouldn't hurt to get a second opinion.