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

[Deesknee]

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.

 

[newtexan]

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!

 

[macraven]

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.

 

[Talking Hands]

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

 

[Tonydana]

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!'

 

[newtexan]

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?

 

[rkmassa]

Dyazide has been a lifesaver for me. I have had ringing in my ear off and on for over 2 years. I have had dizzy spells, but in the past 6 months the spells and ringing have become disabling. I vomit for hours and the room spins. The ringing was nonstop. I finally found a wonderful ENT doctor. He tested my hearing, and tried a few other ideas, but he was sure I had Meniere's disease. I was put on the Dyazide, and within days my ringing stopped, and with my low sodium, no caffeine, and no alcohol diet , I feel really good every day. I don't know what I would do without the medication.

 

[macraven]

i've been on dyazide for years but it hasn't helped with meniere's for me.

but, it's good that med has helped you with your condition!

 

[anonymousegirl]

A couple of years ago, I had an attack and Meniere's Disease was suspected, but positional vertigo seems to have been the culprit. I had all kinds of tests and the specialist ended up doing a head turning/twisting procedure to get those crystals back where they belonged. I was heading to Disneyland in a week and had to avoid all coasters, and spinning rides. Kind of a bummer, but I am lucky that I haven't had an incident since.

 

[karen4546]

I too have Meniere's disease. My grandmother had it also.

I have to take a "water" pill twice a day and watch caffeine and sodium intake.

The last "attack" I had was terrible lasting a full day where I could not get out of bed without feeling like I had to vomit. The next day I was okay but so worn out.

I never know when the "attacks" will come as there are no warnings. But since I have been taking the medication and watching my diet- I have been okay.

I do still have ringing in the ears, but not constantly and it is not a loud ringing-I sometimes don't even notice it ... until I think about it.

This disease is no joke and no fun.....

 

[mickeymaker2003]

I teach special education in MN. What you want is a 504 plan. It provides accommodations due to medical need where specialized instruction is not required (unless it is severe enough that she would need a class like adaptive pay Ed instead of General gym--she would need an IEP for that). Since it sounds like your daughter would just need teachers to be aware of her medical issues and make reasonable accommodations in the classroom as needed,a 504 plan should be all you need. Your school administrator (principal) can help you get one set up.

 

[Dimaline312000]

My father was diagnosed with the same disease, although it doesn't sound like it's as bad as your husband. We just went in late November and early December and as long as he didn't go on to many rides that messed with his stomach he was fine. I think it just depends on how bad you have it and what you think is best to do in the situation. Have a wonderful time!!

 

[StirlingSilver83]

I have had this disease since I was 10. It's awful! I never know when I am going to get an attack. When I get attacks I literally throw up and pass out. I am on medication that controls the severity of the attacks but I still get them. I can't do roller coasters and I have to be careful about turning my head too fast. I also get awful ringing in my ear which causes me to get a headache from it. It's gotten so bad that for our trip to Disney this year I am renting an ecv from an offsite vendor bc I never know when I am going to get an attacks and better to be sitting down if it happens. It's an awful disease. Very debilitating.