Menieres - help!

Ears, nose and throat
1

Hello

I am feeling a bit lost right now and wondered if what I am experiencing - anyone has experienced too?

It all started back in April, I was out jogging and all of a sudden the world started spinning and I fell to the floor, it lasted a few minutes, I felt extremely nauseous and as though I was being pushed down. The walk home after the 'attack' was so hard, every step was such an effort and I had to keep my head dropped low as my eye sockets really hurt. I went to bed when I got in and was completely useless to everyone. The after effects lasted a couple of days which I can only describe as extreme travel sickness. I didnt understand why it happened but put it down to the jogging. It didnt happen again for about a month, this time I was just getting dressed in my bedroom, I dropped to the floor, like I was being pushed down, felt really nauseous and the room was spinning really fast and I couldnt focus. Again I went to bed, in a dark room and the effects this time lasted about 5/6 days. Again, a month later, this time I was just sitting talking to my friend on the phone, the after effects this time lasted about 2 weeks. I then started feeling like I was off balance all the time, like I am floating, and when I turn around the world takes a few seconds to catch up with my eyes, really uneasy. Now they are getting more frequent.

When I am in a shop I feel very strange, the lights hurt my eyes, patterns make me feel queasy, different textures or colours in a rug, lines on a radiator, its like looking at one of those 'magic' pictures where it jumps out at you. I could be standing speaking to one of the mums at school and my head feels funny like I am in the clouds and I feel like I could have an 'attack' at any time. I could have one two days in a row and then nothing for a week. But this week I had 3 in 24 hrs, I was out walking the dog and all of a sudden I felt myself going, I ended up in the dirt in stinging nettles!

When I read up about Menieres it says about Tinnitus, but I dont have that. I do feel a strange sensation in my ear but no ringing or bad pressure.

I really feel like this is affecting my daily life, I am off work at the moment as I feel so awful but because people cant see it I feel like I am a hypocondriaque. I was on a restaurant with my husband and I had to keep my head and eyes low the whole time as the lights made me feel like I was going to have an attack.

Does this sound like Menieres, I feel really scared for the future right now. I am off work, I cant drive and apparently there is no cure. I have been on Betahistine for about 3 weeks now. I went to ENT and they said I could have Otoschlerosis but the GP thinks it is Menieres and want to see me again in 2 months.

Please help!

Alison

2

You are experiencing what is generally termed Episodic Vertigo (a description of the symptoms, but not a diagnosis).  The most commonest cause is Vestibular Migraine.  This may be related to your photophobia, but this can also be seen in Meniere's disease, which is the second most commonest cause.  Because you had difficulty walking back during the first episode, I suspect that it is the former, but of course from here I cannot confirm this.  I recommend doing pure tone audiometry with ENT.  If it shows hearing loss below 2 kHz, then it is Meniere's disease.  I would also do a caloric test.  If it is normal, or abnormal equally on both sides, then it is most likely vestibular migraine.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiology

Fellow of the European Academy of Neurology

3

YES I HAVE MENIERE'S AN YOU AN I HAVE THE SAME FEELING EXCEPT I HAVEN'T HIT THE GROUND I FREEZE AN DONT MOVE WHEN I FEEL IT BUT ALL OF YOUR SYMPTOMS I HAVE AN ALSO JUST STARTING VESTIBULAR REHABILITATION AN I TAKE Ear injection THIS BEEN 4 MONTH OF HELL

4

Yes it sounds very much like Meniere's disease. I would stop fooling with your GP and a regular ENT and go to a specialist at a university hospital close to you. They have the wherewithal and they have some treatment that could possibly help you. This is a devastating disease to have to live with I live with it daily. And you never know what's going to happen next it's totally unpredictable it's from day today hour to hour and minute to minute. You need to get on a low sodium diet 1500 milligrams or less and you also need to get on a diuretic daily. They think that it's possible fluid in the ear that does not dissipate like it should. And yes, no cure.

I also have taking prednisone orally for 17 day period to try and see if that helps . And I have had steroid injections in my ear. 2 so far not sure any if it really helped but I'm trying anything and everything that I can. Next steps will be Gentamicin injections but then that would be irreversible and nerve damage to the balance nerves. If it worked okay but if it doesn't then it's irreversible so I'm not sure I'm going that route just yet. I see a doctor Eisenman at the University of Maryland in Baltimore. I'm not sure of your location but if you are anywhere near there this guy is just fabulous!

When you do feel like severe attack coming on there is a medication that you can take that will break the attack it helps just calming you. I'm not sure if that's the route you want to take but it's Valium and it's very low milligram but it tends to break the a attacks for me. When an attack comes on you get anxiety and stress and that makes it worse. Anxiety and stress is a big factor in triggering also.

Good luck I hope you get some help there's a half years to understand the devastation in the debilitating disease that this is.

5

The sudden falls when an attack starts are a known feature of Meniere's called 'the drop'. You must get properly diagnosed by a Consultant Auralphysiologist who will test your hearing and balance  and should order an MRI scan to eliminmate other possibilities. Hearing damage tends to get worse with each cycle of attacks and after the early stages is irreversible. So it is good that you have started betahistine. The trouble is it takes a long time to be effective and only if the dose is high enough. If your GP has prescribed it you are probably on 16mg tds, the maximum allowed in the British National formulary. I was started on that dose and although it helped with my hearing it did not stop the attacks! Only when I eventually got to the right consultant was the dose increased threefold - 48 mg tds - and thankfully that worked and I was in remission for over 18 months. I have recently had a recurrence so my dose has increased to 64mg tds. Fortunately betahistine has almost no side effects so it is a pretty safe drug!

I carry Stemetil, Buccastem and Stugeron tablets with me at all times as if taken quickly enough they can abort or at least reduce the severity of an attack.

On an optimistic note 70% of sufferers get better.

Good luck.

6

I have the same issues but my attacks don't last for days but I have spinning bad I feel like the windshield wipers set me off like u say ur afraid I've always had vertigo dince a child but they only lasted seconds to minutes n had to sleep afterwards three years ago is when my life has changed.. I stopped working I learned to live with it! Salt free diet helps watch what u eat don't get upset keep stress at a 2... Do u notice it's intense before your menstraul? I was told it will not go away salt free diet vestibular therapy will help.. It's a inner ear sort of damage which I was told would only be seen in a autopsy! Basically u have to live with it..... U won't die u just have to figure out how to live with it..... I worry everyday I'm scared to go to school functions swim go on rides eyc,... I understand

7

My ent told me never to do the ear injection? He says it does more damage then good? Steroid? What's that for? My ent n neurologist diagnosed me w this on top of central vestibular dysfunction which is also on top of meniers...... I go to Columbia n Nyu what about u need some inout

8

Wow I have the same thing as you.... I take a Valium w the attack is going to come