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

Ears, nose and throat
1

Hi all,
im 22 and im really suffering!
The below are my symptons, can anyone tell me what it is.
Ears hurt
Can’t stand up without wanting to pass out
Just look at a computer screen
Loosing hearing in my left ear
Migraine
Constantly shakey
Dizzy
Feel Sick all the time
Heart palpitations
Not sleeping
Can’t lay on my ears
Can’t focus
Slearing my words
So sensitive to all noise
Can’t lift my head properly
Face feel swollen
Pins and needles in my arms
Lean to my left

ive been to the doctors about 7 time in the last 4 months and they cant tell me what it is.
i have MRI friday and ENT in october. Do you think they will be able to tell me what it is?

thank you.

2

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.

3

mmm its really getting me down. I have been on steriods and antibiotics twice.. im now on co-codamol and amitriptyline. Unfortunately nothing is working tho.. Thank you very much for your concern :)

4

Well i hope you get it sorted as it really dont sound pleasent

5

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.

6

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.

7

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.

8

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 <3

9

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!

10

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

11

Thank you so much! what did you go through for them to diganose you with that? Was it the doctor or ENT? im suffering so badly that its affecting my day to day life. I have such clogged ears and head and nothing is taking the pain away.
Feels like i always have to yawn because i feel like im constantly under water or on a plane..

I have my sisters wedding on friday in italy and the thought of getting on a plane snd the hot heat scares the life out of me.. because it always makes it 100 times worse.

Thank you so much again.

12

Thank you. I just hope ENT can get to the bottom of it..
Ive been on antibiotics 2 times and steriods.. no pain killing or medicaine helps. I wake up every day with it!

Doctors are just unsure and dont help at all..

Thank you again.

13

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!

14

hi! i get what you say, for some time i felt exactly the same. my journey started in November of 2017, after nearly fainting in Lidls because everything was moving. after nearly a month of trying to see my GP and get a diagnosis only to be told i needed to lose weight. by January i changed surgery as i was getting no help. it was October 2018 before i got formally diagnosed. but before i got diagnosed i was put initially on PROCHOLPERAZINE (given to me after another trip to A&E) and then my new GP put me on BETAHISTINE because of the vertigo and nausea. i still didn't feel right, its like you said, you feel like you're under water, constantly tired/drained, sharp pain on one side of my head which would last only for a minute and then disappear, light sensitivity, phantom smell (this symptom actually was what helped me get diagnosed with VM). ended up seeing an audiologist first, who gave me a leaflet with vestibular disorders. i took that leaflet back to my GP who then finally realized i could be suffering with a vestibular disorder. after that he requested an MRI (to rule out tumours) and the next step was to see an ENT, after a few tests at the ENT he was able to diagnose me with VM. my GP then put me on AMYTRIPTALIN. the ENT gave me a list of things to avoid and i have been doing a lot better.

15

Pay attention to your migraines, they get triggered by certain things, once you realize what those things are, avoiding them+medication will definitely make a difference and you'll get your life back. my personal triggers are stress, sugar, hormones (period time) and heat is also not my friend. the more i avoid these things the better i feel. also try seeing the "light at the end of the tunnel", i know its not easy when you first start, but eventually it will help you cope. please also bear in mind that all the meds i cited here have side effects, but depending on dosage you should be fine after a few weeks.any time you feel like ranting, we are here, we get it.

16

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.

17

Denny, you surfaced a very important point about MD....statistically over 50% of MD is originally caused by allergy. And it is allergy that then triggers future symptoms. Sometimes the allergy is in the air (dog dander, hay fever, etc) and sometimes it's non allergic rhinitus. Managing the triggers is vitally important. For those of us whose triggers are in the air we must use nasal/sinus cleansing and a good nasal antihistamine inhaler (must be nasal spray NOT oral meds). The worst symptoms of MD (vertigo/ear fullness) are believed to be caused by interrupted/insufficient blood flow through the inner ear that then fails to "wash" away the excess/accumulated fluid caused by the disease. Betahistine (at 48mg/day or higher if necessary) has proven very helpful to most MD patients because it will increase blood flow in/through the inner ear and "wash" the excess fluid away thereby eliminating or greatly reducing symptoms. I have had MD for over 40 years and for the past three years bilateral MD. Over the years I've been through most treatments (diet management, diuretics, allergy management, steroid injections, gentamicin injections, and betahistine. The only things that worked for me (and most folks on this site) were gentamicin (40 years ago) which completely eliminated the vertigo in my left ear, allergy management, and betahistine which completely eliminated the vertigo from my right ear. And the ear fullness is completely eliminated. Unfortunately I still have tinnitus from both ears but it is much milder.

So, in summary, from my experience of over 40 years struggling with this disease and talking with multiple neurotologists (inner ear specialist ENT) I've found only three things that are truly effective in managing MD: allergy (and non allergic rhinitis) management, betahistine and gentamicin. The first two are non invasive and I believe should be every ones first step.