posted
I'm 14 years in with newly discovered Lyme disease, and had been misdiagnosed with "Meniere's" disease (syndrome) about 3 years in.
I had then and still have pretty severe equilibrium issues, sometimes I have the sensation as if I'm swinging in a hammock. Other times I feel the room spin.
Another occasional sensation is when I lie down I feel very heavy as if I'm going through the bed and falling "into" the bed."
Along with this I get ear "fullness" like I need to pop my ear but can't. Also, ear noises like buzzing & swooshing sounds. Earaches and stabbing pain. Also jaw pain.
All of this, along with an ENG test showing I have vertical nystagmus in my right eye caused the Meniere's diagnosis. Long since dis-proven. Since I never had any hearing loss which is a main symptom of Meniere's.
Has anyone else had these sensations? Have any of you heard of Meniere's?
Posts: 17 | From Santa Clarita, CA | Registered: Sep 2013
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I had a dx of 'atypical Meniere's disease'. My symptoms included severe and sudden hearing loss in one ear, nystagmus, vestibular damage on one side (through ENG testing) and I developed many other symptoms after this. I often felt as though I was off balance or walking on a boat - esp. when it was dark. Going down stairs made me dizzy.
I got easily fatigued following my hearing loss and noticed that I would cry easily with frequent mood changes. I also developed a trembling feeling in my head and extremities, including the feeling that my head was too heavy to support (I call it the Humpty Dumpty syndrome).
Then I developed horrible tinnitus in both ears - in one ear it sounds like a factory with machinery and in the other, it is a constant high pitched hum. The tinnitus that sounded like a factory has changed over time and now is more like a 'whoosh' except for when my symptoms are flaring.
The years before the hearing loss, I had migrating joint pain and some sleep disturbance, which we attributed to getting older (and menopause). My immune system had been doing a good job of fighting things off, I believe.
Now I have more odd sensations in my head - like ginger ale is sizzling throughout and there is pressure in my sinuses. My ear flutters sometimes and often feels as though there is water in it.
I also have episodes of sinus and jaw pain, and have been researching the possibility of dental cavitations and a chronic sinus infection, as there is a cyst in my sinus floor directly above my dental implant. I had a molar removed last June that became infected (previously root canaled). I am looking into getting the implant removed along with some mercury fillings that are still in there.
Sometimes, I have the feeling I am going to faint and my ears get totally blocked up and all the tinnitus will stop when this happens - for a few peaceful seconds. Then all the noise starts up again.
So I never really had the drop down vertigo that is associated with Meniere's and you never had the hearing loss. When you don't have all the symptoms of Meniere's, it is considered 'atypical' and usually means that your symptoms are secondary to some other cause.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I also had a diagnosis of Meniere's. The Meniere's symptom I had were the hydrops, hearing loss, tinnitus and fullness in the ear.
I didnt have the type of vertigo associated with Meniere's. My vertigo is caused by visual stimulation. If fast moving or rapidly changing images occur, my brain can't process what it sees fast enough resulting in a weird feeling.
I also have nystagmus in my right eye and an abnormal ENG and ABR.
So far the tinitus has reduced a lot along with the ear fullness. While my vertigo issues are always present they vary day by day in severity.
However my hearing loss worsened when my LLMD thinks a bunch of cysts burst along some nerve associated with hearing.
Posts: 836 | From Somewhere | Registered: Nov 2010
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posted
dbpei, I can relate to the "humpty dumpty" feeling too. I also get the ginger ale sizzling in my head.
Terv, I also get vertigo from visual stimulation although sometimes I have it laying down with my eyes close, Also right eye nystagmus keeps me from driving long ways.
There are so many Vision and ear issues associated with Lyme that I can't believe the ENT or even MD (or Neurogolist!) never thought to look into it. It took me all these years to finally put two-and-two together.
Thanks for the replies, I know I'm not alone in all of this.
Posts: 17 | From Santa Clarita, CA | Registered: Sep 2013
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I've been dealing with vertigo since last September, but have no nystagmus and all tests are normal (hearing test, MRI, etc.).
I am pretty sure it is some kind of infection (Lyme and/or coinfection), just not sure which.
My vertigo started after a dose of IV Doxycycline... I stopped the med, but the vertigo hasn't stopped.
In my case, it seems to be more related to visual stimulation and position, and not hearing-related...although, I do also have tinnitus (that started a few years ago, though).
A family member has Meniere's and she controls her symptoms by avoiding artificial food additives (color/flavor, MSG, preservatives, etc.) and artificial sweeteners.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Razzle, Vertigo is awful, lots of time accompanied by nausea. I haven't been back to LLMD since dx IGeneX so haven't started any treatment yet.
I'm scared of starting antibiotics making symptoms worse, but need to start in order to get better from all of this.
Posts: 17 | From Santa Clarita, CA | Registered: Sep 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Yep, I relate. It started while I had the bulls-eye rash.
It felt like I was tumbling down a hill and couldn't stop. It also felt like I was on a carnival ride and couldn't get off.
I could be laying still and still have the sensation.
It went away completely when I took antibiotics (a combo and took a couple months).
My body still feels heavy, but the swaying like you're on a boat sensation is totally gone. No tumbling or carnival-ride dizziness anymore.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Judie, all of these descriptions are so right-on. It's difficult to describe the sensations to people not afflicted, but yours and dp, terv, etc. really hit it dead on.
Posts: 17 | From Santa Clarita, CA | Registered: Sep 2013
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