Diagnosed with Meniere's but unsure
Posted , 5 users are following.
Hey everyone
So I've been having dizzy/balance issues now for the last 3 years. the first two years I'd only get it for a month or so and it would disappear. the symptoms were a constant mild dizziness with a loss of coordination and balance. it would last from the time I'd wake up until I would sleep. Busy areas, bright lights and loud noises would make it worse. I also has issues focusing my eyes during these periods and would have brain fog like crazy. last year in march these symptoms came back but they have remained and have been ongoing. Some days worse than others. it almost feels like I'm drunk. I do get ringing in my left ear at times but both ears pop and feel full at times especially if I go up any small elevation. I had an MRI done and nothing showed up. finally just saw a neurologist who then had me see his colleague who specializes in vestibular disorders. he did the hearing test along with a bunch of other tests. based on the testing I have hearing damage in my left ear and the left ear showed a significantly high level of fluid build up. That was the only 2 things I scored out of normal on. My neurologist said based on that in his opinion I have menieres disease. Does this sound right ? I have never had crazy spells of vertigo or sickness. just a constant dizziness and pressure feeling. I for sure sometime get unsteady when i look up or down quick but i have never fallen. Besides the dizziness the biggest issue is the brain fog and concentration issues that go along with it. my last year has been so miserable and I struggled every single day. It made my girlfriend resent me and she ended up leaving me a month ago which has only added stress with having to sell our house and such. Anyways let me know what you think
0 likes, 11 replies
Bluesmann justin93
Posted
I have never had fluid build up with the mennieres....so i am not sure what they based the diagnosis on....the hearing test possibly?......Have you seen an ENT? What were the bunch of other tests? Balance test?......Sounds like possible mennieres but not enough info to reply properly
justin93 Bluesmann
Posted
So it was a dizzy clinic that i went to that just specializes in the vestibular system. They did the hearing test and I have no clue what the other tests were called to be honest with you. They made me lay back and played some sort of sound in my ears and had sensors all over my head to check the response my ears had with my brain. they had me sit up and look at a screen that had a smile face I had to follow with my eyes while I wore a device that looked at my eyes while doing it. They also put warm air in my ear and made me dizzy and watched my eyes with that same device. All he found was I have a certain frequency in my left ear that I cannot hear and an excessive amount of fluid in the left ear. according to the vestibular specialist and neurologist they believe it is menieres. Told me to try the low sodium and high water consumption diet without caffeine, alcohol or sugars for 3 months and see how that goes. I just have not really found a case online of menieres that sounds like mine. I dont see anyone reporting dizziness and balance issues all day every day for a year straight. I also dont have these crippling attacks where everything is spinning with vommiting.
tanney justin93
Posted
"traditional" Meniere's Disease has the following symptoms:
severe vertigo lasting at least 20 minutes and up to 24 hours
ear fullness
tinnitus
hearing loss in low decibel range.
Your symptoms appear to be missing the severe vertigo. There are variations of MD however that do not have severe vertigo. Based on your description of the vestibular tests you had it appears you did have the standard tests for inner ear problems. If your doctor believes you have MD then it is likely you do. If the recommended diet does not seem to help then ask your doctor to start you on betahistine. Most MD sufferers have had success with this med. And regarding your inbalance you might want to look into Vestibular Physical Therapy. VPT will help you recover your balance and lessen your dizziness. Good luck!
Bluesmann justin93
Posted
ok thise are the tests that they gove for mennieres and ruling out other things so thats good
no two cases are alike nor does anyone have exactly the same symptoms thats the puzzling partin asia they recommend 8 glasses of water a day so water is a benefit betahistine helps many low salt a mist low sugar and wxcercise not eceryone gets every symptom and it comes in ohases woth many i went two years no disabiilitating vertigo then had a drop attack good luck
justin93 tanney
Posted
Thank you for the advice. I will look into the remedies you mentioned. For sure I just feel my symptoms are very different than typical maniers. I get this heavy feeling in my head with neck pain and head pain. my scalp and sinus areas all burn or ache. pain behind my eyes. It is just weird I dont see a lot of those type of symptoms. I am going to get a second opinion for sure though and will seek out the suggestions you had. thanks !
tanney justin93
Edited
Justin...a good source of information about vestibular problems is a non profit organization called VEDA. They are an excellent reference for some of your concerns. Their home page is:
Good luck.
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chandra71 justin93
Posted
Hi
I too have similar issues like yours for last 3 yrs.
I too was diagnosed with Meniers and later diagnosed with Vestibular migraine as I used to have frequent migraines. I too do not have vertigo, but constant imbalance , tinnitus . Crowded places are really problematic for me and walking in busy markets is really impossible for me as severe imbalance attacks then and I used to sway .
ENT says its due to anxiety and referred me to a psychiatrist, which is due next week.
But I am not sure as this anxiety started after the onset of this symptoms, not before, which I believe natural as you have health issues and definitely as a human being there will be anxiety.
justin93 chandra71
Posted
Yes mine does sound similar to yours. to be honest it is possible that anxiety is making it worse or causing the symptoms to keep happening. It could just be a constant loop where the balance issues and dizziness cause anxiety which in return keep you in that state of dizziness. It may be worth a shot investigating ! Anxiety and stress can really cause literal damage to the body so it's not just a made up symptom. I for sure am trying to find natural ways to destress and take care of the anxiety to hopefully help reduce symptoms.
justin93 chandra71
Posted
I actually have a good example of where anxiety can cause a problem. When I was younger about 13 I choked on food significantly. scared the living hel out of me. Gor almost 3 years after I could not swallow properly. felt like my throat was always closing and I'd have to take small bites and wash it down with water every single time. Couldnt even think of eating something without a drink or I would choke again. Literally was just anxiety recreating that feeling every single time I would eat. The brain is a crazy thing.
walito66 justin93
Posted
During the last three years when all my issues started, I have similar symptoms you’re experiencing. Only different from your case is I do not have fluid in any ear and I have experienced the spinning vertigo event two times in the last three years.
I have visited three Neurologists; two in the USA and one in another country. All three communicated the same. Hearing, unbalance and vertigo issues are very difficult to diagnostic. In fact, on the Neurologist told me she has been suffering vertigos for 25 years.
Then I visited my first ENT. After several tests similar you have taken, I was diagnosed with Meniere’s by this Doctor. Then, I went a visited two more ENT’s other opinions. Based on one ear test and several MRI’s test, I was diagnosed with “Vestibular Neuritis” but the right ear nerve was damaged potential due to ear infection in the past. The Right ear showed 24% Weakness compared to the left ear. Both ENT’s Dr. believed and confirmed I did not have Meniere’s. Unfortunately, the symptoms for most ear/hearing problems are very similar and Drs provide similar treatments. I have asked to do exactly what you are mentioning in your notes and execute everyday the eyes, neck, balance, etc. exercise.
Unfortunately, I also have two cervical spine disks with issues so this problem makes the problem worse. People with cervical issues, also can get Vertigo and Unbalance problems.
My issues still about the same as my first year, Year two was better and now year three started getting some worse during the last two weeks compared to last two years.
Three Neurologist and one Spine Surgeons reported that at this point I do not need any spine surgery (Thanks’ God) the two ENT’s I keep visited them every 3 months for follow ups and check progress or report new issues
I am getting to the point that I have done all in my power, but I still believing in a miracles.
I hope you get better.
justin93 walito66
Posted
man stories like yours do not make me feel to good about this I must say