Is it really Menière? I need your help!

Ears, nose and throat
1

Hi everybody.

First, I am glad I found a forum on this topic, it's a real relief as, it is always like that, we always feel isolated in our pain and people think you exagerate or make it up because the symptoms are not really visible. I think, I might just punch the next person who tells me it's just stress and I need to relax ;-)

Everything started last summer. I woke up one morning, very tired and extremely dizzy, not really with an impression of seeing my environment spinning but more as a general lack of balance and a feeling of floating and lightheadness. With the dizziness came the nauseas and migraines, plus general exhaustion. I also had a strong sensitivity to noises and a sensation of being pulled in one direction. This has lasted for a whole month and a half. I lost a lot of weight. I went to see different specialists, and they discovered a peripheral lesion in my right ear.

A doctor advised me to take Ginkgo Biloba and betahistine and spin on a turning chair. After 2 weeks of this treatment, things went back to normal, with some episodes of dizziness exprienced when I got stressed or tired.

The symptoms came back at the beginning of february, the next day after I landed from a long trip (4 planes in a week). I went to see the ENT who diagnosed a potential menière's desease since I had an important ear loss in my right ear and that the other symptoms seemed to indicate it. He gave me steroids and a diuretic. I also have some balance exercises to do at home. After a week of treatment, I started feeling better, but I am still experiencing dizziness, especially when I am stressed, and a feeling of numbness in my head, as if there was a huge pressure on it all the time.

I am wondering whether this is really menière because, from what I see on the internet, I get the impression that menière is more about short -extremely intense - symptoms and not prolonged symptoms like those I have, symptoms that last for weeks.

I feel really lost and without recourse because, being in that situation for weeks is barely standable. I try as much as I can to live normally, but this obviously reaches its limits since going to the cinema, bars or even going to the grocery shops is a nightmare. I try to remain positive but am psychologically not at the best.

Any of your experiences or comments would be of a great help. Many thanks in advance!

 

2

It does sound like MD to me, because it varies enormously from person to person, if you look at personal stories on here.  Mine is different now to how it was when it first started, and I had a long period when I had very few bad attacks, just a general feeling of dizziness some days that I took stemetil for.  My hearing loss in my left ear is very bad, and I get the sensitivity to sound in that ear only - it is called Hyperacusis.  I'm on cinnarizine, which is really helping.  You can buy it over the counter as Stugeron (for travel sickness) or get it on prescription from your GP, and I take 30mg three times a day.

3

Hi Tagada,

your symptoms sound very much like mine, I have had md for a few years now! Sometimes my symptoms can last weeks or even months and are much worse if I eat a lot of cheese or lack of sleep. 

4

It could be MD.

MD is so varied from person to person and the damage after each attack varies from person to person - My hearing had about all gone in my left ear after the first 5 attacks and had real problems just staying upright or walking a straight line due to the damage to the inner ear (I still do have wobbly days most days, but they are the least of my problems lol)

I agree with "fil39169" that you need something to dampen down the problem, I take Cinnerazine, (or any other travel pill - Stugeron etc) but just twice a day helps enough to cope with the wobbles. I do find that it works better if I don't take it every day, just when I really need it, it seems to be more effective and I don't get the headaches that it gives me if I take it too often.

Experiment with what suits you, it can take time.

I go through ups and downs all the time with this rotten illness which I've had since 1999, I now have it in both ears.

I've had to completely change my life - I had to give up work, I never go to cinema, noisy places, or travel too far and I never go out alone.

But on the plus side I have joined a textile art group and we are exhibiting our work this year at two exhibitions and I hope to get a local MD group up and running (or should that be wobbling!) this summer.

Do you belong to the Meniere's Society? or the group on facebook, it is really good to have contact with people who are in the same boat. It was especially good to me as I met my partner (he has MD too) through putting an advert on the penpal page for friends in the MD Society magazine "Spin"

It is a depressing thing to have, when I think about all the things I used to do and can't do now I sometimes hit rock bottom, but it helps to have contact with people just to have an online chat or moan (I can't use phone - distortion and hearing loss)

It may be a good idea to see / go back to a specialist, just in case there is another problem.

Take care, be good to yourself

Oh, and if you do punch someone (I have come sooooo close to doing that) it would give them something to worry about lol (broken nose, black eye etc) - it always seems to be the people who have nothing wrong with them that say that - one said to me "oh I'm fine, illness is all in the mind" !!! 

 

5

I'm looking closer into what is called vestibular migraine. AKA silent migraine. I'm not implying that is what you have. There are so many possibilities. I know one person personally who said she started getting vertigo and dizzy spells. She experienced hearing loss in one ear. Consequently she was diagnosed with Meniers. The dizzies stopped after about a year and she started having digestive issues. I can't remember what the condition was called digestion wise. But all this ended being an auto immune response which she has somewhat under control now by watching diet. That means keeping a diary of what foods were consumed and when with any adverse affects noted. In that she found a connection with gluten. My advice, keep an open mind. Think back what came first. For example in my case vertigo. But later I realized no that is inaccurate. It was ear pressure for several years before. When did I get the ear pressure. For that I went back into old emails to my sister and found an entry. Oh that was when I was having a huge acid reflux problem and the specialist put me on twice a day Prilosec. Later I was getting Charlie horses in my calf and shoulder blade. Then I looked up Prilosec and found it inhibits asorbtion of magnesium. Magnesium deficiency can cause charley horses. Then I found magnesium can aid in preventing migraines. In the end it looks more and more for me like vestibular migraines especially when I add in other symtoms along with past history of migraines of the headache variety. Since it seems most MD' s ignore mineral defienciencys and diet I found near me an MD who being fed up with traditional western medicine now specializes in a holistic approach using natural remedies. Hope this helps. Good luck to you.

6

Hi will, what is a charley horse please?  I've also heard that migraines are closely connected with MD.  I get a sort of silent migraine that just gives me flashing lights in my peripheral visioin, but if I take painkillers, it dies down and doesn't last very long usually.  My GP told me it was a migraine - I'd been getting worried and thinking TIA!!!!!

My MD started slam bang with a vertigo attack in the middle of one night, when I woke up with the bed rocking and the room turning and couldn't understand what was wrong with me.  It was lucky my husband had suffered from MD and knew exactly what it was.  I'm always sick in my bad attacks, are you?

7

Charlie horse is a painful muscle contraction. In regards to being sick. Yes enough to require an ER visit. Lately or it starts with sinus, head, ear pressure. I can take care of that using a sinus rinse. That is Followed by a low level headache with light nausea and unsteadiness while walking about. Driving can be challenge also. Usually a ginger pill will alleviate the unsteadiness and allow for a more comfortable and safer driving experience. Stress is a huge trigger as is long periods between meals. I'm still learning what if any food triggers there are. In the end I never know when an episode of vertigo will occur or how bad it will be. I hope by eliminating long term PPI use. You can look it up and seeing if magnesium supplements help along with magnesium oil which you rub on your skin I can finally turn the corner. Or not, it all takes time to sort out. If you suspect migraine of any kind check out heal your migraine 1 2 3.

8

Hi this is so miserable when it occurs, since diagnosis last November, having had a cluster during the summer/autumn period of 2014 I have been looking for ways of managing.  I have found the vestibular and Cooksey Hawthorne exercises invaluable.  This together with  betahistine.  I start off in the morning with stretches, exercises and then meditation.  They do need quite a bit of getting use to.  Good luck with whatever you try

9

Many thanks for your kind answers. I will try to do the best I can to alleviate the symptoms and get rid of it for good. I am doing the vestibular exercises, twice a day, when I wake up and go to bed. 

I don't take the betahistine on a regular basis: it is not working for me and just makes me feel exhausted. I'll try to reduce my slat intake, no cafeine, and do some relaxation, take a diuretic. Working out, surprisingly has proven to be extremely helpful. 

I have an hypersensitivity to sounds, especilaly metallic ones, that resonate very much but this, in comparison with the vertigo, seems like nothing to me

 

I think my current crisis - hopefully - is almost over since it got much better a few days ago. But I can feel how stress is making it worse, it is really linked. 

I will see my ENT in a few weeks to try to go to the next step. 

Many thanks again to all!!! 

 

10

Glad you mentioned meditation. I found this very helpful in teaching me me to relax. On a side note I mentioned meditation to my boss how to do it etc. because he was so stressed. He went home tried it and says thanks that really helped. Anyway..

11

 sounds very promising