Vertigo / Ménière's disease - Really need help!?

Hi Jess

Gosh you sure are going through it...Im a new comer to meniers myself so am not totally up on all the symtoms but some of what you are going through sounds like meniers disease... I cant believe they are not seeing you until october with all that you have going on Has you doctor put you on any medication yet.

Hi Jess. You sure have a load of symptoms. I'm so sorry you are going through this. An ENT will be able to diagnose what is causing all of these symptoms....it's a shame that you have to wait until October to be seen. What you have does NOT sound like meniere's disease but rather some type of ear or gland infection. ...or possibly a terrible Migraine attack. Have you been on antibiotics? What did the other doctors say that you saw seven times? I sure hope they tried a few remedies. Please stay in touch and let us know how you are doing and what the ENT says. Good Luck.

Hi Jess, I suggest you push to see an ENT earlier. You are really suffering. Don't wait till Oct. I have vestibular migrane. When it hit me I can't move my head. Moving my head causes great discomfort & pain. I have sit still & wait for it to go off. It's self limiting & I am not taking any medicine. I have earing loss & tinnitus in left ear. I am presently under the care of a neuro otologist (ENT). Often I get dizzy in the morning. Usually after a meal, I get better. Taking a nap in the afternoon helps me too.

I really hope you get to see the right doctor fast & get those problems off or at least some of them.

hi JESS! your symptoms sound like vestibular migraenes to me (except for hearing loss). i have vestibular migraenes myself and i am on 10mg Amytriptalin 1-5 a night to prevent the migraenes and 16mg Betahistine 3x a day for the vestibular symptoms. what you should know is that it does get better, you will learn to manage your symptoms and avoid things that trigger episodes. my own personal triggers are stress, sugar and hormones (period). if you do your best to avoid your triggers, which could range from certain foods, drinks, environment, smells, hormones etc, you will be able to almost go back to normal. hang in there, we're all here if you need us.

Hey gal,

I'm 23, and this journey started for me 2 years ago when I was 21. I'm so sad someone else my age is going through this, it's literally paused my entire life, I had to drop out of uni etc. I'm so sorry you're going through this too.

Your symptoms don't sound like Meniere's, they sound like TMJD. I was diagnosed with Meniere's because I had basically all of those symptoms and nobody knew what was wrong with me, but it turned out I had TMJ. I am not cured yet, because I live in England where there are no decent specialists, but I know very many people who have been cured. Even those who have been diagnosed with Meniere's and suffered for over 30 years with it were cured by getting to a good TMJ specialist.

Especially the numbness and tingling in your arm is very typical of TMJ disorder. The only consolation I can offer you is that in time the hyperacusis (noise sensitivity) will lessen, and so will a lot of those symptoms. But honestly not by much, you really gotta get to a specialist if you can.

I've been researching Meniere's and TMJ constantly these last couple years so if you have any questions I'd be happy to answer ❤️

I hope you are doing better. Some of your symptoms look meniere's-like but some do not. Best advice is to pursue it with the ENT Doc and don't give up until you get a solid diagnosis that can lead you to treatment.

With meniere's, I always tell people that I identified a major trigger for mine in sodas (and some other items) that contained the artificial sweetener aspartame. There is some science behind labeling aspartame a neurotoxin... that can damage the inner ear. There is lots of info from the industry claiming it is totally benign, too. I mention this because aspartame has been linked to some migraines as well. I don't ask for anyone to believe me, but throw it out there for anyone who wants to give it a try: go without any diet sodas with aspartame for a week or so and see if you experience any lower frequency of episodes. It might help in your case if the inner ear is the seat of the problem. Give it a try; its free.

GOOD LUCK FEELING BETTER!

menieres disease is difficult to diagnose. there are specialists and I recommend you visit them.

I'm so sorry you are suffering so much right now. You've been given good advice here. While you're waiting for your doctors appt join some of the fb support groups. Look under 'pages' for each group. I have Menieres and learned most of what i know from these resources. There is also a lot of misinformation so just know that and know that everyone with vestibular disorders is different and there are many underlying causes to explore. I'm still trying to figure mine out but i learned about meclizine, betahistine, and TMJ possibilities from these pages. also low dose valium, which Im not taking yet. GOOD LUCK!

Because Menieres has so many different manifestations -- variations in symptoms -- it takes persistence to do the following:

• Get a solid diagnosis
• Figure out the right treatment
• Isolate your individual "trigger" or "triggers"

In my case, I had a pretty daunting 60 days after the onset of the full-blown disease. Those 60 days caused me to retire from my job. I visited a number of doctors until I got a second diagnosis confirming the one from years before, but didn't have much luck with standard treatments (including steroid shots, diazepam, etc.). I eliminated salt and caffeine from my diet. I did learn that meclizine helped to control the vertigo.

The worst part of that first major episode tapered off, but many symptoms remained. Almost by chance, I isolated something that was definitely a trigger for me: aspartame, the artificial sweetener. That may be the only practical thing I can pass along: give it a try to cut that out of your diet. Other people might have other triggers, but it would seem logical to simplify your diet, go with natural or organic foods, eliminate a given item for at least a week to give it a chance to leave your system, and experiment. Salt and caffeine? Maybe, for some folks. But don't stop there.

I gradually got better, that is, episodes stretched out further apart. I went back to work in another job, and had at least two very memorable "attacks" while traveling in Europe for work. Both were triggered, I believe, by meals in restaurants, which I strong suspect included aspartame in sauces or deserts (aspartame in Europe is labeled "E 951" but isn't always listed on menus for specific meals).

One of these incidents seems almost comical now. I was absolutely wracked by vertigo on travel-home day. I don't know how I drove the rental car to the airport; it must have looked like a drunken driver following the white stripe down the side of the road to the airport early in the morning. I turned in the car, and literally had to pull myself along the railing a few steps at a time to get to the main terminal and the check-in counter. I could not focus to see, and I could barely stand up, and I felt -- well, if you are reading this, you know how I felt. At the counter, I was very fortunate to find very understanding airline personnel (United Airlines) who re-scheduled my flight (at no charge) and got the airport Hilfe fur Behinderte to get a wheel chair and wheel me into a room at the airport hotel where I could get in bed for 24 hours until I recovered enough to fly home.

I still have some mild effects of Meniere's from time to time, mostly a little light-headedness, but am pretty darn functional (it's been seven years since the major onset). But I'll bet if I had to perform a "field sobriety test" given to drivers who are suspected of driving impaired (I don't drink at all) that I could not stand on one foot or put one foot in front of the other without appearing a bit wobbly. Because I have lost some of that finer balancing ability.

Bottom line: persistence; willingness to try different approaches; and patience with the fact this is not a simple disease to overcome, with one simple solution for everyone who has it.