Meniere's Disease

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Meniere's Disease
« on: June 13, 2017, 11:56:50 PM »
I won't go into too much detail, but I think I might have an early stage of Meniere's Disease (a severe inner ear disease). I've had ear issues since I was little but they have been getting progressively worse over the last 2 years or so. I'm going to get checked out as soon as I can. But I'm curious - do any of you have chronic ear/inner ear issues? They say stress makes inner ear disorders worse, and lord knows I've had way too much stress since forever. I don't want to tell the audiologist or ENT about my abusive past or sleep issues but if it is impacting my ear health I feel like I maybe should. What are your experiences with this and do you have any advice for me?

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Zeus Faber

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Re: Meniere's Disease
« Reply #1 on: July 11, 2017, 03:52:09 PM »
I developed Menieres disease and I would say it was linked to stress, I did a lot of research on possible causes and joined the Menieres disease society - ( UK) they recommend stopping drinking instant coffee ( some chemical they put in it to make the froth is not good ) stop taking Ibuprofen ( due to stress I was popping them like sweets ) cut down on salt, stop eating artificial sweeteners. I also found that if I was on the phone a lot while on the computer, my head position could trigger an episode. In fact , thinking about it , it was when the relationship I was in began to show itself as toxic as well as when my mother ( one of the authors of my toxic life story ) developed Alzheimer's. I hadn't made the link before , but thinking about it , if there isn't it was a big coincidence !!

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sanmagic7

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Re: Meniere's Disease
« Reply #2 on: July 12, 2017, 01:09:05 AM »
eg, i don't have experience with this particular condition, but i do believe you can give a brief statement to those helping you.  something along the lines of having c-ptsd (usually, they here ptsd, and understand something's out of whack without going into details) and how stress is interfering with your sleep. 

i don't know if that's helpful - it's just what i guess i would do.  i did mention c-ptsd when i was at the eye doc's and the assistant startled me.  she was kind, said that she would make sure to let me know what she was going to do beforehand so i wouldn't get startled.    i hope you find some relief.     :hug:

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Deep Blue

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Re: Meniere's Disease
« Reply #3 on: May 19, 2018, 06:15:45 PM »
Sorry I know this topic hasn’t been posted on in a really long time.  I have Ménière’s disease and was diagnosed about 4 years ago.  Not a week goes by without me taking medication for it.  It can make me fear going out or driving. 

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Kizzie

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Re: Meniere's Disease
« Reply #4 on: May 20, 2018, 06:20:29 PM »
Just thought I'd include a link to the Mao Clinic's description of what this is - https://www.mayoclinic.org/diseases-conditions/menieres-disease/symptoms-causes/syc-20374910 .

I can see why you would be nervous about driving Deep Blue.   

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Deep Blue

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Re: Meniere's Disease
« Reply #5 on: May 20, 2018, 07:19:18 PM »
My vertigo can can get unbearable at times.  My frustration is that the medicine just stops me from throwing up when I’m dizzy.  It doesn’t help the dizziness.   

Heavy sigh...  :sadno:

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Kizzie

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Re: Meniere's Disease
« Reply #6 on: May 20, 2018, 10:59:23 PM »
I've had a couple of mild bouts of vertigo not even nausea with it and I can't imagine having it constantly Deep Blue.   :hug:   

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Deep Blue

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Re: Meniere's Disease
« Reply #7 on: May 20, 2018, 11:02:22 PM »
Thanks for the hug Kizzie  :hug:

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BeHea1thy

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Re: Meniere's Disease
« Reply #8 on: July 21, 2018, 01:00:05 AM »
Hello All,

A little late to this thread, but I'd like to share some experiences which might be helpful. My experience is not Meniere's per se, but parallel to it. There may be some overlap, or not. If there's anything that's helpful, embrace, otherwise, forget it.

Decades ago I had head trauma as a consequence from a fall from a horse. I developed a couple of issues. One is severe to profound deafness, which took a long time to manifest. One is an autoimmune disease associated with a protein called K-64 I think. It was discovered in the mid 90's way too late for any intervention. One is an inner ear disorder of the vestibule, which controls balance.

After tripping over non-existent things on smooth surfaces, falling down, thinking my shoes were to blame and having random strange bouts of disorientation, I finally went for testing. It was confirmed that the right ear had 50% or less function, which essentially means it is non-functional. The testing was quite rigorous and made me ill, but it only lasted and hour and a half. Because of the diagnosis, vestibular neuronitis, I was referred for vestibular rehab. This organization helped me make sense of the many facets and is a good way to learn about the interaction of multiple symptoms.  https://vestibular.org/understanding-vestibular-disorder/symptoms

I used a cane to walk for balance for a while, maybe a year or so. I developed my own rehab and walked every day in different environments to gain some confidence and develop compensation. Now I'm up to 3-4 miles a day, outside, unaided. Previously I only navigated enclosed spaces and held on to railings or was never an arm's length from a wall or furniture. I still trip occasionally and still get nauseous while riding in vehicles (buses and cars where I'm a passenger.)

If you are experiencing ongoing dizziness, vertigo, etc I would recommend you take it seriously and bring it to a specialized MD, not a PCP or GP. It will help to document the symptoms for at least 30 days so it will be taken seriously.

ElizabethGeneieve , ZeusFaber, DeepBlue, my thoughts are with you.  :bighug:

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Deep Blue

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Re: Meniere's Disease
« Reply #9 on: July 21, 2018, 01:06:37 AM »
Thanks BeHea1thy,
I’ve been to specialized ear doctors.  The testing made me very sick as well.  Recently I started going to a chiropractor to try to help my vertigo.  It does seem to be working a little.  Any improvement is helpful to me.  I had a bout this morning and took some ginger tablets.  Baby steps but I promise I take it seriously.

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BeHea1thy

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Re: Meniere's Disease
« Reply #10 on: July 21, 2018, 04:55:55 PM »
Deep Blue,

I'm glad that a chiropractor has given you some relief. I wouldn't have imagined that! Don't give up, keep searching and taking those steps.  :hug:

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Deep Blue

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Re: Meniere's Disease
« Reply #11 on: July 21, 2018, 05:36:46 PM »
Thanks I will  :thumbup:

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Rudi

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Re: Meniere's Disease
« Reply #12 on: July 29, 2018, 07:52:40 AM »
I have not yet been tested for Meniere's disease due to other issues I'm dealing with at this time but my ear doctor put me into hearing aids which immediately cut the intensity of the ringing in my ears (full disclosure, I have hearing problems) by so much that I was amazed. Since I have been wearing them I have been able to cut the amount of medication I take for vertigo and nausea, which I took several times a day, down to maybe once a week, if that.

The downside is that hearing aids can be expensive and insurance barely pays anything considering the cost, however, I would sell an organ to get the relief I am getting! Like teeth, ears are important and really I had no idea how not being able to "hear myself think" was truly affecting my mental health even more.

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BeHea1thy

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Re: Meniere's Disease
« Reply #13 on: August 27, 2018, 12:32:49 PM »
Quote
I had no idea how not being able to "hear myself think" was truly affecting my mental health even more.
  :yes:

 :cheer:  Rudi! This is a great observation for those who suffer with tinnitus and I've noticed the same thing about wearing my implant processor.