Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > disABILITIES!
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





Reply
 
Thread Tools Rate Thread Display Modes
Old 09-05-2012, 12:56 PM   #16
WHIT1
Mouseketeer
 
WHIT1's Avatar
 
Join Date: Apr 2005
Posts: 284

Smile

Quote:
Originally Posted by HMGar View Post
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.
__________________
:disrocks
WHIT1 is offline   Reply With Quote
Old 08-07-2013, 06:57 PM   #17
newtexan
DIS Veteran
 
newtexan's Avatar
 
Join Date: Sep 2011
Location: used to be a Texan, now a nor'easter
Posts: 549

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?
__________________


newtexan is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 08-07-2013, 07:51 PM   #18
geek+nerd
DIS Veteran
 
geek+nerd's Avatar
 
Join Date: May 2010
Posts: 869

Quote:
Originally Posted by 3prettyprincesses View Post
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.
__________________
PJ http://www.disboards.com/showthread....9#post37986109

1987 Off-property; 2008 Off-property; June 2011 DFTW!!! POR & Off-property; December 2011 POP; June 2012 POP; June 2013 POP; December 2013 AoA
geek+nerd is offline   Reply With Quote
Old 08-07-2013, 08:26 PM   #19
Jacqui8374
Lover of all things Ursula
 
Join Date: Jun 2006
Location: London England
Posts: 98

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
Jacqui8374 is offline   Reply With Quote
Old 08-07-2013, 08:52 PM   #20
macraven
Proud Redhead
Has the longest test on record
Iím a Universal Homie
 
macraven's Avatar
 
Join Date: Apr 2003
Location: between milwaukee and chicago (in Tom Felton's house)
Posts: 56,838

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.
__________________
life is what happens to you on your way to achieving your dreams...........

macraven is offline   Reply With Quote
Old 08-08-2013, 12:46 PM   #21
Deesknee
When we were kids (long time ago) they did this with cows.
 
Deesknee's Avatar
 
Join Date: May 2004
Location: South of Boston, MA
Posts: 4,060

I feel strongly about getting 2nd opinions. Although i don't have menieres they considered it for a while. Low salt intake should be recommended.
I agree with the pp, talk to the school nurse, she should be aware.
I was told everyone gets a signal they are about to have an episode, but not everyone realizes that is what is going on. The research that was given to me, indicated some get visual disturbances, or aroma, perhaps a hearing disturbance more than usual, or a headache. Your dd should try very hard to be conscientious of her body.
Best of luck to your daughter.
__________________
How many surprises can we fit into 1 week? TR - Aug 2013- http://disboards.com/showthread.php?t=3164295

Vow renewal trip report http://disboards.com/showthread.php?...0#post46760210

Triplets + singleton = living happily ever after in Mass
Deesknee is offline   Reply With Quote
Old 08-08-2013, 01:27 PM   #22
newtexan
DIS Veteran
 
newtexan's Avatar
 
Join Date: Sep 2011
Location: used to be a Texan, now a nor'easter
Posts: 549

thanks for weighing in, I hadn't really thought about trying to talk to the school nurse, great idea

I am worried about the episodes she gets during class where she can't hear/see and misses the work assigned or described. She doesn't want me to tell every teacher about it but I can't see not telling them.
So far, she hasn't fallen down with it, just gets the ringing in the ears, pressure in her head, blurred vision, and if walking she feels like she is falling so she leans against a wall.

I checked our insurance and their is not another pediatric ENT in the area we can see affordably, so hubs and I have to decide what to do about a second opinion on the medicine. We feel pretty confident in the diagnosis this being her 5th doctor to see and second set of balance testing/hearing testing. They ruled out so many other things since December of last year, we are almost relieved to have this diagnosis vs it being a neurological problem.

sigh, mostly i needed to hear that she is going to be okay and that someone else knows about this thing
so thanks again!
__________________


newtexan is offline   Reply With Quote
Old 08-08-2013, 02:18 PM   #23
macraven
Proud Redhead
Has the longest test on record
Iím a Universal Homie
 
macraven's Avatar
 
Join Date: Apr 2003
Location: between milwaukee and chicago (in Tom Felton's house)
Posts: 56,838

you should talk with your daughters school dean/counselor besides nurse.

this is a medical condition that they need to be aware of.
what if she can't make it to class on time?
what if the teachers think she is daydreaming in class and not listening?
what if the hall ways at school are crowded and she is having vision or balance problems?

unless they are aware of the situation, they may jump to the conclusion it's a drug issue.
or, someone may call for emt/ambulance thinking she is in a dire emergency since nothing is on file for her meniere's.



show them the doctor's diagnosis of meniere's and what the doctor wants her to do if she has an episode while at school.

the staff will work with you and your daughter if she starts to have an episode while in class at school.

if her episode is mild and doesn't effect her gait, but concentration, she can let the teacher know after her class is over.
the teacher can give her additional help with what she missed during that period.

staff at high schools will work together.
her dean/counselor can advise her teachers she may possibly need additional help during the school year.

have a plan already set up so it does not become a worry or stress situation for your daughter.

meniere's is not the end of the world.
it is an annoyance that can be dealt with and not limit your life style.


btw, i teach high school.
__________________
life is what happens to you on your way to achieving your dreams...........

macraven is offline   Reply With Quote
Old 08-08-2013, 04:25 PM   #24
Talking Hands
|,,|/ DEAF DISNEY LOVER
Mom to 2 beautiful young ladies
SIGNS TO OLDIES ON THE RADIO
 
Talking Hands's Avatar
 
Join Date: Mar 2002
Location: Pooh's Thoughtful Place AKA SE Fla
Posts: 10,161

Please get an IEP or 504 plan in place so your daughter can get any accommodations she needs.
__________________

Talking Hands
|,,|/ DEAF Disney Lover
Talking Hands is offline   Reply With Quote
Old 08-09-2013, 08:32 AM   #25
Tonydana
Mouseketeer
 
Join Date: Apr 2000
Location: Dighton, MA, USA
Posts: 247

Quote:
Originally Posted by 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?
I was finally diagnosed with this about 4 years ago. I eat a very low sodium diet have no caffeine and do not drink alcohol. I am very careful at planning our trips. We visit Disney every year as we have an 11 yo son. I stay away from any simulators and spinning rides. My husband tends to try any new rides first and can pretty much tell if I can do it or not. If I cheat at all in my diet for example eat something too salty eat chocolate or drink caffeine (we don't drink alcohol anyway) I pay dearly for it later. I have a constant prescription for meclizine and take as needed. Have take. Up to five times in one day before. And take hydrochlorothiazide daily. I wear two hearing aids as my hearing stinks. Still live a fun full and active life with it. Just need to learn what works best for you. And was diagnosed with ms two years ago as well. Which my neuro believes the meneires could be related. It's all good. Just be strict on her diet. Drinking lots of water helps me as well. Good luck!'
Tonydana is offline   Reply With Quote
Old 08-09-2013, 09:39 AM   #26
newtexan
DIS Veteran
 
newtexan's Avatar
 
Join Date: Sep 2011
Location: used to be a Texan, now a nor'easter
Posts: 549

om my gosh, your replies are so helpful.
I will definately go in with her to talk to the counselor when she changes her schedule next week.
Any hints on an IEP? Do I need a drs note? Thoughts on what I should ask for it to include?
__________________


newtexan is offline   Reply With Quote
Reply



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 02:09 AM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.