Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
I agree that finding information and a doctor who knows about Meniere's is not an easy thing. Here is a web site I found that seems to have lots of recent information: http://www.earcentergreensboro.com/medical-education/menieres_disease.php
My questions for the group: 1.) Has anyone had the dexamethasone shot through the eardrum and if so, what were the results? 2.) If you have drop attacks, how do you deal with your the loss of independence?
A little history about me: I was diagnosed just over 2 years ago. My first symptom was going to bed one night and waking the next morning deaf in my left ear. The first dizziness started about 2 weeks later, but I was able to tough through most situations. My first true vertigo drop attack with spinning and vomiting occurred late at night on August 3, 2012. My husband and I were running our bed and breakfast alone and I had 10 people to feed in 6 hours. (which I recovered enough to do.) However, I had a hard time concentrating. As an avid multi- tasker, I was unhappy to learn brain fog was another symptom of Meniere's. I also began having intermittent tinnitus in my bad ear. My next drop attack also came at night, on October 3rd. I woke from sound sleep, got up and flew across the room into a wall. My last attack occurred January 18, 2013 about 5:30pm, just before guests were to arrive. I had no warning symptoms and was feeling great. My last words before I hit the floor were "Oh no!" I am still light headed and feel off balance 3 weeks later.
Treatments I have used or am using in order of use are meclizine, low salt diet, triamterene/hydrochlorothiazide, and valium. I have progressed through 3 doctors and had all the normal tests I've seen mentioned on this site. I am now seeing an ENT specializing in ear surgery and Meniere's. He is suggesting a dexamethasone injection (steroid) through my ear drum. He would have done it on my first visit and says he has several patients who drive themselves to get the shot and are fine right away to drive home. He said they come back for another shot when they "feel the need."
My concern is the total lack of warning before a drop attack. I am afraid to go for a walk alone and certainly am not driving. The drop attacks are months apart and I feel relatively good in between.
My questions for the group: 1.) Has anyone had the dexamethasone shot through the eardrum and if so, what were the results? 2.) If you have drop attacks, how do you deal with your the loss of independence?
A little history about me: I was diagnosed just over 2 years ago. My first symptom was going to bed one night and waking the next morning deaf in my left ear. The first dizziness started about 2 weeks later, but I was able to tough through most situations. My first true vertigo drop attack with spinning and vomiting occurred late at night on August 3, 2012. My husband and I were running our bed and breakfast alone and I had 10 people to feed in 6 hours. (which I recovered enough to do.) However, I had a hard time concentrating. As an avid multi- tasker, I was unhappy to learn brain fog was another symptom of Meniere's. I also began having intermittent tinnitus in my bad ear. My next drop attack also came at night, on October 3rd. I woke from sound sleep, got up and flew across the room into a wall. My last attack occurred January 18, 2013 about 5:30pm, just before guests were to arrive. I had no warning symptoms and was feeling great. My last words before I hit the floor were "Oh no!" I am still light headed and feel off balance 3 weeks later.
Treatments I have used or am using in order of use are meclizine, low salt diet, triamterene/hydrochlorothiazide, and valium. I have progressed through 3 doctors and had all the normal tests I've seen mentioned on this site. I am now seeing an ENT specializing in ear surgery and Meniere's. He is suggesting a dexamethasone injection (steroid) through my ear drum. He would have done it on my first visit and says he has several patients who drive themselves to get the shot and are fine right away to drive home. He said they come back for another shot when they "feel the need."
My concern is the total lack of warning before a drop attack. I am afraid to go for a walk alone and certainly am not driving. The drop attacks are months apart and I feel relatively good in between.
Thanks for your posting. I have had the dexamethasone shots (three in total a month apart). They did absolutly nothing for me at all. That dose not mean that you should not give them a try however. The reason they are supose to work is under the theory that Menier's is an auto-immune condition. There has been sum success and the risk of damage is very low, much lower than surgical options. I also had sac decompression which was also unsuccessful and did lose an aditional 20% of my hearing, again every one is different and I would have tried both proceedures again. About drop attacks, I have a saying I tell people "fall forward" which kind of tongue in cheek means, if you have to fall, forward is the best way in life, The reality of Menier's is you sometimes can tell when vertigo hits but drop attacks can shoot you down like a lighting bolt, with no warning at all. Of all my drop attacks very few have been in the forward direction, this is distressing because I have really hit my head hard, one time I knocked my self out. What I do to deal with this is use a rotery walker (one with wheels and a seat), I do not drive at all, I do not go anywhere without someone to supervise me. My advice is find friends to do things with who understand your condition. My greatest fear is not being with someone, have a drop attack and then having kind people call the ambulance and I get halled off, it might take a while to explain to people, I am OK... I just got Meniere's.
Have a blessed day!
Rich
I just went through the web page you posted. I have never seen a better, clearer worded and best defined discription and treatment of Meniere's. Thank you for sharing that link. I got it saved to my favorites and will use it in the future.
God Bless!
Rich
On a positive note, I have a neighbor with Meniere's who had two drop attacks on business trips. Fortunately, they always happened when he was in his hotel room. He retired and started taking triamt/hctz and hasn't had an attack or any symptoms other than the lingering deafness and tinnitus in over 3 years.
Thanks for the website info.
Have a great day!
I can only answer your first question since I haven't had any drop attacks, at least so far. I have had the dexamethasone injections, however, and though the steroids did not help me at all, they did not cause any harm, either. It is often considered the first treatment option because there are generally no side effects if it doesn't work. I thought it was worth a try.
I'm sorry to hear that you are having drop attacks--that is one of my worst fears--and I will pray that you get some relief from them. I still work a full time job myself and I know how difficult it is to keep working when you feel so miserable. It must be really hard to keep up with your bed and breakfast duties and have to suffer through the drop attacks!
Good luck and keep us posted on whether you decide to do the injections.
Just wanted to add to what Rachel said, and thank you for being one of our heros! You have a zest for life and are truley blessed to have a suportive spouce. I wish I could help you with your fear of falling on these drop attacks, I can however understand how you feel, I am a big man it scares me like nothing else can, and Im just in my 50's!
Have a blessed day!
Rich