Thanks for the concern, ladies. Well, the neurotologist visit was interesting. I was pleased with the doctor, he spent well over an hour with me (and never seemed impatient) asking questions, taking notes, clearly thinking things through...seemed knowledgeable and thorough. Unfortunately, I don't really seem to be typical for anything. He doesn't want to call it Meniere's because I have no vertigo, and most of my other things (fullness and tinnitus) aren't fluctuating, they're constant, although my hearing loss does some. My hearing in my bad ear is worse, I went from 100% word recognition in August to 70% now and was lower on every frequency. This was quite depressing, as I didn't have any loss between my two earlier tests. My hearing in my good ear still is normal, but a slight bit worse than last time. He suspects that it is an autoimmune problem (based also on some blood tests I had a couple of months ago after I had a bad reaction to the diuretic) and wants me to go to a rheumatologist for further testing...my impression is that might give us an answer as to cause, but not a solution. He gave me a prescription for a 6-day pack of steroids and left the choice to take them up to me...can't decide, a little scared of the side effects. One thing I asked about, as I am in my 40s--there is some chance that female hormones can be involved, as there are estrogen receptors in the ear. Something to think about for us middle-aged women. Also, he said that reducing anxiety will help with the tinnitus some...that about 70% of his patients have success with that. (However, since tinnitus is the CAUSE of much of my anxiety, this seems like a vicious circle.) He did a few tests...including the one where you march in place with your eyes closed. Only...when I opened my eyes, I was no longer "in place"--and I turned AWAY from my bad ear, which is not typical. He said my bad ear is overstimulating my brain, sending too many signals to it. Because I don't yet have vertigo, he didn't do many of the other tests. We talked about allergy as a cause...he said in most people in whom allergy brings on these symptoms, they are severely allergic to lots of things...I've always had very mild seasonal allergies, so despite me being on a food allergy diet (still), he didn't really think that was the cause (and to be sure, the diet hasn't helped, and it's been 6 weeks). So...still losing my hearing, still undiagnosed, and mostly untreatable. And still atypical. But do feel like I saw someone who knows more about this than anyone I've seen before...I just don't fit any particular mold. (Sigh.)
I'm sorry there wasn't a quick (and treatable) answer Abra :-\. I can sure understand your mixed feelings - it was good to see someone who obvioulsy knows what they're talking about, but it sure would have been nice to walk out with more answers. Your atypical symptoms sure seem quite similar to mine. My ENT has not performed much in the way of tests though, including blood tests to look at an autoimmune issue. I did enquire as to whether or not he thought my mm could have an autoimmune connection and he said yes, most definitely it could in my case but that he wouldn't try any steroids on me because of the side effects. He said the side effects outweigh the benefits. Now I'm left wondering though. I keep wishing that some doctor would give me a chance to try the steroids - maybe then I could save my hearing. Without a trial run at it how can we know the side effects are too awful to withstand? Many have gone the steroid route for years, prolonging their hearing greatly. I know that in my case I would really like the option. I'm glad you have been given it. I just wish you had been given a magnificient cure as well. All the best in whatever you decide. Please let me know how it goes. Amethyst
Abra, What kind of reaction did you have on the diuretics? I was given them in Feb and couldn't function on them. Just wondering. I have thought maybe mine could be due to autoimmune but don't feel like I have been taken seriously. I have an appointment with a neurologist the end of this month, have been taking notes on points I want to go over with him. I was seeing an VRT who mentioned that she hasn't seen eyes track like mine do. Evidently my left eye will only track a pen being brought into my nose to certain point and then stop if both eyes are tracking, if only my left eye is tracking then it will do the whole way. By the way my MM is in my right ear so not sure if left eye should be working this way or not. My neurotologist finds it odd as well. Also my neurotologist isn't sure what to do regarding my sleep issues, I wake several times a night and go back to sleep, don't get any restful REM sleep it seems. My attacks come about every 6 months and can't pinpoint a trigger. So overall I am glad I made an appointment to just talk to one and see if they can offer any insight into items my Oto can't seem to explain. I made the appt 3 months ago and wasn't sure if it was worth it. KareBare
Amethyst...what you said made me think I SHOULD try the steroids. The side effects should go away after I finish them, and I only have 6 days worth...and how can I not try to save my hearing because I MIGHT have side effects? Thanks for pointing that out...although, I do want to start a thread on the steroid side effects since it got lost in the shuffle before I do it. KareBare...I took Dyazide (actually, the generic equivalent) for four days...on the 4th day, my blood pressure, pulse and blood sugar shot up and I felt like I was having a daylong panic attack. I went to my GP the next day and he took blood for a CBC and blood chemistry test...and all sorts of things came back wrong, about half the stuff they tested. A week later, most things were back to normal....after I quit the Dyazide. And I never did feel like the Dyazide had any effect in those four days, no increased urination or anything at all. What kind of reaction did you have?
I think it's great that you started a new thread on steroids - good idea to make your decision carefully...and it will be interesting to see what others have to say about their experiences too.
Abra, I got very fatigued, lost appetite, and lethargic. I stopped because I didn't feel I was benefiting from it. Tried again in the summer and same thing happened. When I called doc on it, he just said to stop and didn't want to try a different brand which I thought odd. KareBare
Karebare, Interesting...I asked this new doctor yesterday about a different kind of diuretic and he didn't want to try one either.
