Hi there....MD sufferer.

Hi, I know this is a  very debilitating condition ..... But this is not that uncommon a  condition. I am a clinical audiologist myself , which means I do get to see many patients with this condition. Over the years I have realiased that Minears support group gives the individual and family effected by this condition lot of support and tips to manage the condition. Pl dont feel alone... I suggest u get in touch with a  group .. this will be helpful. Also if u have  a diagnosed hearing loss rectify it as well.....

Hope my comments were of some help

Hi anne, sad for you that you are in the middle of a very active phase. My advice is to avoid alcohol and avoid noisy places, you nay have found you have increased sensitivity to noises? Please read/download book by Meniere Man, he has written a few, and they have great advice for 'self help'. Helps explain what is going on in your affected ear and why you get the symptoms you get. From my experience if you have a vertigo spin this has caused damage in the ear and a dew more spins will follow until the damage heals itself in your ear. Bit like a wound takes time to heal. Keep taking the betahistine, I am on 32mg x3 times a day and have had no spins since sept 2014. I did have a grommet fitted under general anaesthetic and 2 months later had a steroid injection of dextramethasone into the ear. No spins since. However, I know I have menieres, the medication does a good job of masking it so it is copable. I can drive and I can work, quiet office so fingers crossed I hope this can continue. Log your spins and your symptoms. I do believe because I kept a diary of them and could tell the Ent that id had 25 spins, longest was 5hrs.. that I got the grommet. Good luck, keep us posted. You will have to adapt your lifestyle a bit and just know that the phase you're in now won't last forever.

You do not say what dose of betahistine you are on. You would probably benefit from increasing the dose. I was put on 48mg tds when 16mg tds did not work and advised that if necessary the dose could be raised a lot more. Fortunately that has not been necessary and I am in remission.

The leading research expert on this condition and drug is Prof Michael Strupp in Munich. Look him up on Google.

Best wishes.

 

I have hearing loss when I have an attack and then the hearing gradually comes back, although I have never had great hearing. And I am on 32g serc three times a day. Thanks for your replies.

What state do you live in. Would like to find people in the Orlando area.

You are definitly having a rough go of it. I was forced to retire because of mine and my sympoms were nowhere near as bad as yours. I am wondering if taking dyazide may help you more that betahist. Betahist is not available here in the states. By the time I got to an ENT I had minimal hearing in my left ear. My hearing was back within the week. I still have a sensitivity to certain noises and prolonged noise exposure will set off a migraine and my balance stinks but things are better. I hope you are able to learn to control the phobia and that things start getting better for you.

Hi anne54405,

Welcome. You explain exactly the way I do og MD.

It's debilitating and yes a phobia comes along with it.

Never know when the attacks will occur.

I've been "attack free" for almost 3 weeks now. And decided I'd try driving again after 6 months of being driven around like "driving miss daisy"!

Eventually, the attacks should ease up, the tinnitus in your ear won't be as annoying.

I will say that I believe the dyazide (diuretic ) has helped with a low salt diet.

Hoping for another 6 yr break.

Good luck! It's only those of us that suffer from this that really understand .

Welcome and sadly there are many of us out here. I can only share what I have done to ease my symptoms. 1. I stopped ALL artificial sweeteners. My research showed a link between MD and asperteme so I stopped all of it. I was a gum-chewer (American, you know....) and occassionally put sweetener in my coffee. 2. Added tissues salts and B vitamins to my already-substantial daily supplements. 3. Head, neck and shoulder massages once a week. 4. Low Salt. 5. I wear earplugs pretty regularly. Angela mentioned staying away from noisy areas and, speaking for myself, noise is a HUGE trigger. I use sewing machines in my job a lot and wear headphones. My students think I am just listeining to NPR! 6. I work out every day so I sweat and keep my body fluids moving. I also dance which helps the vertigo. 7. I use a homeopathic ear drop once a week called Ear Ring.  

I have no idea if one or all of these things helped but I went from nearly constant attacks to one every couple months. And they are SO much milder; barely a nuisance at this point.  There is a ton of good advice on this site. I have learned a lot. So keep reading, make as many healthy life-style changes as you can, keep a journal so you can notice triggers and hang in there!