Just needing to blow off steam! We have only one ENT office in our small town. I've only been there once and left disappointed with the care. Today I went again wanting to explore the possibility of MAV. The Dr first ask me how I was treating my Meniere's. As I started to tell him I was using anti-virals he began shaking his head asking "why?". I tried to tell him about Dr Gacek and he's still shaking his head saying he never heard anything about antivirals for mm. I offered him Dr Gaceks paper but he was not interested and just wanted to know who was prescribing them for me. I told him all I know is that when I try to stop using them I start having severe vertigo attacks again. I also said many others seem to get good results and his response was "I doubt very many do". Needless to say by this time I knew it was going to be a waste of time to try to convince him of the benefits of antivirals. I moved on to the MAV subject. He said there is no test for MAV and the trigger foods are the same as for mm (I disagree there) but he would suggest I try migraine medicine to be used only when I feel an attack coming on (I don't get headaches). Finally he said I don't have "normal" Ménière's because I haven't lost my hearing at all. Yet each time I would say I have aural fullness, tinnitus, or light daily dizziness he would say that's "normal" for Meniere's. And when I asked if he knew of any trials or new treatments for Ménière's he said no because it's too complicated. I left there frustrated and told my husband I was done with that Dr. Okay...end of rant....thanks for listening!
I can totally relate to your story as I can't even get a firm diagnosis. I was told the only way to tell if I have Meniere's is to come into his office during an attack and see if I lost hearing. Next. Another told me based on my VNS to go to Vestibular Rehab. It doesn't matter what I call it. Now my symptoms have changed and I am dizzy almost all the time and my neck is tight and my head feels as if someone is holding it, but not hard. I also feel dizzy. My point is I can relate as doctors only go by their experiences in the small tunnel they call their practice. I keep going as discouraged as I am.
So sorry Sharon, no offense but he sounds like an idiot. People with MAV w/o headaches do go on migraine meds. And you dont take them when you feel a headache coming on SHEESH @ your doctor its a daily medication. You should try one if the MAV food triggers which have some in common but many not in common with MM, do not help you. I have posted Dr Hains flow chart on the forums several times (please search for it if you are interested) to see which meds first to try.
I would have told him to " f*"k off you are nothing more than an arrogant ignorant buffoon " You would certainly have got his attention and it would have made you feel better. The annoying part is that he still thinks that he's right. I feel like ringing him myself. Why did he ask you who had been supplying the antivirals to date. Did he want to report them or something. Unfortunately this type of arsehole ENT outnumber the helpful ones.
Why do some ENT's and some doctors pretend to know all about menieres. Most of them know Jack. If they are so knowledgeable why haven't they found out what causes it, if they profess to know so much. The only way they would know what is like is if they had a full blown menieres attack with all the bells and whistles of using the walls to try and stay upright, spinning like a top, room whooshing around, having drop attacks and vomiting until your stomach and sides hurt.
Thanks everyone, your replies always lift my spirits! Vicki, he did prescribe a migraine med but only to be used "if necessary". I haven't picked it up yet so don't even know what it is. Imback, I too have neck pain, have had it since this crap started two years ago. I see a NUCCA and that does help some. The antivirals help the most but I just can't get the relief so many here do. No violent attacks but almost daily light dizziness. And jaypr....you made me smile! There was a time I would have told him exactly what you suggested but today I knew there was no changing his mind and just wanted out of there. I was a little worried too when he was asking who writes the scrips for my antiviral. I don't know what I would do if my internist decided not to anymore. Of course all he has to do is check my chart to see who my primary Dr is. He did finally say "well I guess you can keep taking them but they don't help Ménière's". I just get so tired of looking for a new Dr all the time. Anyway, Happy Thanksgiving you guys, I love you all!
Oh, Sharon. I am so sorry that you had such a crappy experience. It just sucks that we all work so hard researching meniere's and being our own doctors; we then try to share our knowledge with an ENT who supposedly understands meniere's, and the doctor immediately discounts any ideas/research that we have. I also feel like they think we are wasting their time! Who's wasting who's time?? I hope you try the migraine medication and see if it makes a difference. Take care and keep us updated. Ditto on Happy Thanksgiving to everyone! Enjoy your day!
I can't stand doctors like that, make you feel hopeless A doctor who don't listen to his patients Concerns and tells you it's too complicated Is not a good doctor . I would look for a new Doctor with good bedside manner. Feel better Sharon
Unfortunately, most doctors don't remember much outside of medical school. In the case of Meniere's that means, "Nothing you can do. Why are you bothering me?" I had to go through three ENTs before I got one that had any clue and even then I have to push a bit. The first ENT I saw was so bad I found every doctor review website available and left a "less than stellar" review. Keep trying to find a good doctor. It's not as easy if you're in a part of the world with few doctors but it's worth the trip when you get a good one that listens and is willing to discuss treatments. Check out http://www.menieresinfo.com/doctors.html and see if it helps to find someone nearby.
I am so sorry that you went through that. It is almost worse than dealing with this darn disease having to put up with these know it all doctors that admit they know nothing! Makes no sense. The same ones that won't let you try something because "it doesn't work" are the same ones who say that "nothing I can do for you". Been there, done that. Hate that. The kicker to me is that EVEN if he doesn't believe anti-virals work, it has no harm so no sense not to try it. Last, I don't have MAV or migraines that I know about but do know friends with migraines and those that get them frequently have a med that is taken daily. The other pill is only if the attack comes on but doesn't prevent anything.
I have VM too and I didn't get headaches until I was on Topamax my 24/7 dizzy went away but now I get all the migraine symptoms.... I my MM came out of the closet so to speak last month and went bilateral and now I have a diagnosis for both yeah me but even in this huge city no ENT has ever heard of anti virals as a treatment for it or if they have I can't afford the doctor....
Hi Sharon I had a look through your back posts and can't tell if you have considered betahistine (serc). It is a preventative which may well help. Not sure if taking antivirals and serc together is ok but possibly worth a try if antivirals aren't giving you as much relief as you hoped. Serc can be obtained in the US I believe in compound form. I can only say that it was very good for me, its the first medication and is standard in the uk for stabilizing menieres patients.