How do you live with this?

Ears, nose and throat
1

This is a serious question.

I have Ménière's. I'm dizzy every day. I can't even walk around a store, 90% of the time, without feeling as if I might pass out. Or being so off balance that I can barely walk. Or the fluorescent lights and sunlight bother my eyes so much that I can't walk straight; it's as if being blinded. I get dizzy when I drive from staring at everything whooshing by.

Like am I ever going to be independent again? I feel like I'm 29 going on 89. I'm over this.

Does vestibular therapy help at all? It's my only hope I have left.

2

I'm not questioning your diagnosis but, those symptoms do not fit what I have found as the symptoms through researching my condtion.  The Mayo Clinic, in the US, states that these are the symptoms: 

Meniere's disease is a disorder of the inner ear that causes episodes in which you feel as if you're spinning (vertigo), and you have fluctuating hearing loss with a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear. In most cases, Meniere's disease affects only one ear.

Signs and symptoms of Meniere's disease include:

Recurring episodes of vertigo. You have a spinning sensation that starts and stops spontaneously. Episodes of vertigo occur without warning and usually last 20 minutes to several hours, but not more than 24 hours. Severe vertigo can cause nausea and vomiting.

Hearing loss. Hearing loss in Meniere's disease may come and go, particularly early on. Eventually, most people have some permanent hearing loss.

Ringing in the ear (tinnitus). Tinnitus is the perception of a ringing, buzzing, roaring, whistling or hissing sound in your ear.

Feeling of fullness in the ear. People with Meniere's disease often feel pressure in the affected ears (aural fullness) or on the side of their heads.

After an episode, signs and symptoms improve and might disappear entirely. Episodes can occur weeks to years apart.

As I understand, Meniere's has "vertigo" as a classic symptom.  Do you have constant vertigo?  I know that it is frustrating trying to find a doctor that can properly diagnose any inner ear condition.

3

I have your same symptoms. Almost identical. I was told I have vestibular neuritis. Today makes 8 weeks. I no longer have the spinning dizziness. I am off balance constantly and at this point can no longer safely drive. I started vestibular rehab on Monday. I haven't noticed a big difference yet. My therapist said initially I will feel worse since the therapy brings on your symptoms but I will notice a difference in about 3 weeks. It sounds like your compensating visually as I have and that's why you have such a problems driving. You have to work on your visual cues through therapy. Go see a neuro otologist.

4

Hi Hayhue,

​Can I please ask you how long you've been like this and how it all started? This is the first time I've heard anyone describe the symptoms nearest to those I experienced.

​I am now about 95 percent ok with very minor relapses .

If there is anything I can tell you about my experience that might help you, please let me know.

 

5

How long did it take for your symptoms to stop?

6

Hi Hayhue, how long has this been going on for?  If it has been months or years, has your ENT discussed destroying the affected inner ear to stop the vertigo? It is not anyone's preferred option as you lose your hearing in that ear but clients I have seen have been been happier to lose their hearing that to continue to suffer vertigo. Hopefully this is not something you have to contemplate. A second opinion from an ENT that specialises in balance or preferrably a neuro-otologist, is always a good idea as it's not uncommon for ENT's to diagnose the same symptoms as different disorders. 

7

Hi

I don't have Menieres I have MAV with slight MDDS.  The VRT usually takes about 3 months before you will see a difference.  When you start it, you may feel dizzier if you are doing it to fast, the dizziness can last for hours to a day.  Its not the spinning dizzy its the off balance feeling and like your just constantly moving.  I was told by my VRT therapist that the VRT exercises will need to be done for months after the dizziness stops, if it stops completely, I kinda doubt it will tho. Most people i've read about it can stop for a while but usually comes back, i hope thats not true.

8

I suggest not to let anybody take away your hearing. I am single- sided deaf and suffer all you described as well - it's just another level of bad. Don't ever think losing hearing isn't an added trauma, as deafness is VERY LOUD with massive head pressure as well as all the vertigo symptoms you describe. VN - MAV - and MdDS 

My close friend has Meniers and controls it 100% by diet. NO SALT

this is difficult as salt is in just about everything. ( +bi- carb soda) this mean reading the labels and preparing just about everything you put in your mouth. I think you need to get a second opinion on the Meniers. 

9

Do you have Ménière's as well?

I had vertigo for 12 years off and on. It wasn't until this last year that I started having ear ringing, fullness in ear, and vertigo attacks. I saw a neurotologist (for the 2nd time) and went through 3 hours of testing which consisted of the caloric, rotational, ocular, positional, and the VEMP (vestibular evoked myogenic potentials). It was concluded, based on the findings, that I have atypical Ménière's because I don't have nystagmus or hearing loss.

I've read on the VEDA site that people with Ménière's can have every day symptoms or just episodic symptoms like you mentioned above.

10

The spinning dizziness, for me, is episodic. I'm mainly just dizzy and off balance now like you mentioned.

Yes I agree that I am compensating visually, I've heard people mention that. I haven't been to vestibular therapy in years so I'm wondering what all they do now.

A neurotologist gave me my Ménière's diagnosis.

11

Thank you so much! Do you have Ménières as well? I keep seeing people say either they have no dizziness or it subsides. With your Ménière's, you had the same symptoms as I? What has helped?

I had vertigo that came and went since 2004 with no dx but I felt my vertigo coming back on in 2013 and since then I'm still trying to get through the dizziness. Just this past year is when I started having the vertigo attacks. I heard it can take years to diagnose Ménière's tho.

12

I saw a neurotologist and he diagnosed me with Ménière's. I had rotational, ocular, VEMP, positional, and caloric testing. It's both ears, he said, but mainly my left. It's atypical as I don't have hearing loss or nystagmus.

13

Thank you for telling me. I wouldn't risk losing my hearing as I have atypical Ménière's and do not suffer from hearing loss. I'm glad to know tho what the deafness feels like.

As for the second opinion, I literally am out of options of who to go to unless I'd travel 12 hours to Chicago to see the dizzy Doctor. I have been to countless ENTs, neurologists, etc..

The neurotologist I saw is also a professor of bioengineering, otolaryngology, and physical therapy at a well known university in my area. I had to travel an hour and a half and spent 6 hours at the hospital just to see him.

I have thought maybe I have MAV with the Ménière's as I know they can go hand in hand. I asked him about having migraine associated vertigo and he said he didn't think I had it.

Who knows anymore. I'm feeling quite hopeless.

14

Hiya  I think I know how you feel with walking and I use crutches to aid my balance when out, I hate using them they are hard to shop with and they drive me potty but they did keep me walking straightish !  They are good for the balance. Go see a physio about things they might be able to help you and get your eyes checked.   Have you seen your DR about how you are and feel.

15

Sorry I didn't reply straight away. I started with this in January 2015 but it was only intermittent and not very bad. By April 2015 I felt like I'd been run over by a steamroller. Symptoms were so bad I spent many a time at my local A &E convinced I was dying ! LOL Between July and September 2015 , although I had some symptoms they'd pretty much disappeared only to return again in September 2015 until January 2016 when they all but disappeared ( maybe 5 percent!!)/ However, since putting my post up I've had a very slight return of symptoms ( maybe 5 percent or so) and whilst walking my dog a few days agi Ifelt as if I was going to faint. I'm hoping it's a virus aggravating things as I've heard there's a bug going 'round so am keeping my fingers crossed it doesn't get any worse.

16

Hi Hayhue, please see my reply to Tneesha.The consultants have never been able to give me a proper diagnosis.At first I was told by my GP it was probably labrynthitis. However , the first consultant I saw disagreed with this and said it may be Menieres disease. Then a saw a different consultant who said it "may be a combination" of different things as it didn't fall directly into any of the criteria they used for these conditions. It might be worth mentioning that I have suffered migraines over the years in "spells" where they would be fairly continuous for a few months, then disappear only to return a few years later. I only ever had a mild headache but rather drastic visual symptoms. I think there may be an element of migraines in there but it's just a feeling I have. The thing which had the biggest impact on my recovery was the vestibular rehabilitation exercises I was given which I did religiously. Fortunately they seemed to work quite well on me! If you have any more questions ( and that goes for anyone else!) I would be more than pleased to help as people on these forums are the only ones who truly know how awful these conditions are. I know how desoerate I felt when things were at their worst. I even used to think I'd be better off dead, so if I can help anyone at all I'd like to do so.

17

How long was it before you started to feel better? I have some visual changes. It's weird because I can see perfectly 20/20 but when in a car I seem to have an issue. My therapist said because I'm compensating visually my brain is trying to process the info. I am 8 weeks in, but 7 weeks with the rocking feeling and about 6 weeks with the visual changes while driving. Ok starting my 2nd week of therapy and I do th exercises at home but it is very difficult for me to do them 3 times a day. It sometimes makes me feel worse. I feel so lost. I'm starting to get depressed. I'm trying to remain optimistic but it's hard. I feel like this is what I'm stuck with for the rest of my life. I hope it's not but I just have no answers.