menieresmommy











{October 18, 2011}   “Oh, I Have A Friend That (Had) That.”

"I have a friend that had that."

I am a wife.

I am a mom.

I am a spinner.

I have Meniere’s Disease.

This is my journey.

For those of us lucky ones, that were blessed with this inexplicable disease, the words we fear the most:

“Oh you have vertigo?”

” I have a friend that had that.”

” She went to the chiropractor, he gave her some exercises to do, she’s all better now, you should try that, she swears by it.”

“Have you tried acupuncture?”

“try some ginseng candies.”

“Aromatherapy?”

My favorite “Herbal supplements”

Why didn’t my General practitioner, ENT, Audiologist or Otologist that specializes in Meniere’s think of that?

Meniere’s is not vertigo.

Meniere’s does not go away.

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Thanks for sharing, Ahlea. I so appreciate your fierce sense of humor and honesty as you live with Meniere’s.



Mellie says:

Each time I hear or see “Meniere’s does not go away.” I remember my husband’s back as he walked out on us months ago because I “look just fine and use it to get what I want or get out of caring for our 2 boys”
*crying* Yeah, it hurts.
Thank you for your bravery! Someday I will be brave.



Mellie-
What a terrible story. I can’t lie and say I can’t believe that a spouse would do that. I am honestly surprised everyday that my husband is still here. This disease is such a tremendous strain on your body and soul. I have only just begun this blog. I promise to get to the “She doesn’t look sick” blog. I know it ALL too well. I won’t say to you, ‘I don’t know how you do it.” I don’t know how I do it. We just have no other choice is how.
Please know that you are NOT alone. I have some GREAT stories about my MD that are so terrible that I promise to make you smile and feel comforted.
Your husband didn’t know. He has no way of knowing. Nobody does, unless you suffer from MD. I can’t say that I wouldn’t feel the same if the shoe were on the other foot. Meniere’s is a mind****. Plain and simple sister. I will help you along the way. xoa



lolobrol says:

Ditto here Mellie



Jane says:

HI, I’d just like to say thanks to all that wrote and sharing your experiences with people and professionals that either don’t believe you and/or all of the trouble that you’ve had to go through in your life to get someone to diagnose or believe that your problems are real (not in your head or anxiety–to which I was treated for 22 years; thus did not ‘have a life’). I can relate to Mellie as I divorced my husband for mental cruelty with his bi-polar rages and yet he had the nerve to accuse me of ‘screwing up and scaring our kids leaving them with lifetime scars’ because instead of getting sick (vomit or nausea) I got panic attacks on/in moving things (escalators, passenger of car, amusement park rides, etc.). And then when you do something for yourself to make yourself happy and/or sane, everyone who doesn’t understand say you are being selfish! It’s a cruel world, and I hope you all get your hope and treatment if you haven’t yet. I’m better because of Meclizine and anti-anxiety meds, but I’m not perfect or expect to be, but at least I feel more ‘normal’ and can cope with every day life much better. God bless you all x



Sandra McAdams says:

I was just told I have MD…had the procedure where they put shots in your ear…..about a week after that the vertigo started…had a little bit before….but now when it hits I’m in the floor. I’ve had to take off work because I’m a 4th grade teacher….it happened to me when I had a room full off 20 kids….it was scary for them and me. There are all sorts of rumors going around and it hurts…I also have RA and a blood disorder I have to get treatment for…so I miss a lot anyway….so you can imagine all the whispers behind my back…In the next week or two they are going to put in a shunt….hoping that will take care of the vertigo….I hate this….My husband has been wonderful but I don’t know how we are going to make it if I have to quit work!



Hi Sandra-
May I ask what shots you had? Were they steroids or the gentamicin injections?



Angelea says:

It is hard for anyone who hasn’t experienced Meniere’s firsthand to understand the misery of the vertigo, tinnitus, hearing loss, and noise sensitivity. I get terrible brain fog at times, too. Ugh. And then it’s all complicated by the emotional and social toll, it’s all so exhausting at times. But it’s true, we just do what we have to do as we’re able to.

I have 3 kids very close in age, a 10-year old and 9-year old twins. Between this and, more recently, suffering from Meniere’s, I’m often told I am brave – as if I had a choice in either circumstance. Nope. I just do the best I can on any given day. Those people might not be so quick to choose that word to describe me if they saw the amount tears of frustration that have been shed these past two years. It is not easy, but there is no other choice.

At the risk of sounding cliche, we make lemonade out of lemons. And it’s often more tart than sweet.



JK Hills says:

I remember that day my doctor told me that I did not have MD. I had to cry so much….because that means I have to find another doctor and to start again…He was 8th doctor I saw.
It is crazy to say that I envy you guys who has been diagnosed…. but it is true. I had to stop playing piano which was my profession, and is considering not to have kids since I have many moments when I cannot take care of myself.
My husband’s boss also has MD. And He is doing very very strict diet, it must be so stressful, but I really wish I know what to do…to control even little bit.

It has been 5 years since it started. I have been on emotional roller coster. At least I do not think of taking my life with my own hand, but sometimes, it really frustrates and depresses me.



Denise says:

Does anyone have a problem with flashing lights also?



Alfred S. says:

Not as such but I have seen “Auras” or spinning lights like pin wheels at times. I have read that those can be a symptom of a type of migraine where there is no headache but there are other symptoms such as dizziness; balance problems and fatigue. I don’t know if that helps but I thought I would “throw it out there” in case any of it feels familiar



Kasey says:

I was told when I was 20 that I had MD and at first before they knew what it was I just thought for sure I had a brain tumor or something b/c the dizzy spells sucked and I was freaking out!!! Well I am now 35 and I have gotten use to the anxiety, dizzy spells etc. It does seem tho the older I get the more symptoms I get along the way….. It has been acting up a lot here lately but there has been a lot of stress in my life, our house burned up on Dec. 26th 2010 and we have been building the new one for months and finally have gotten to move in! YAY! My question for you guys is this, my MD is in my left ear, do you guys have the roaring sound, pressure in the top of the head at times, bad memory and sometimes blurry vision?? Thanks so much for reading this and helping me out with some answers! đŸ™‚ Kasey



I hate to say I am happy to hear others suffering through what I do every day, but it is comforting to know that there are others living their lives one day at a time and making it through!



Janis says:

Great post. Yes, meniere’s stinks and everyone’s experience with it is different. And unfortunately, it can be hard to find a good doctor to treat you.

I belong to the Say What Club, an online group for people with hearing loss. They have a group just for us Meniere’s people which I have found to be a great source of support and information. Its a free group. Check them out for another place to find support.



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