Hi, I'm new here, so I will provide some background information. I've been recently diagnosed with bilateral Meniere's after having it just my right ear for about 8 years. I've managed for several years taking meclizine and lowering the sodium in my diet, then the past three years having to take 5mg valium for the increasing episodes of severe vertigo and marathon vomiting. I had been prescribed 4mg zofran to help with the extreme nausea, but thankfully haven't had to use that lately. This last spring and summer the bad episodes became more frequent, about one every 3 days, so I started considering more invasive solutions like gentamicin injection or edolymphatic sac decompression. About 4 months ago I went to a new ENT that also does surgery and was run through VNG, and balance testing. The ENT said I have Menieres and Migraine Vertigo since I also get headaches, light and sound sensitivity. I did a migraine food elimination diet and found some foods to avoid like aged cheese and chocolate. I've also eliminated the use of alcohol and caffeine since last spring when thing starting getting really bad. My sodium intake is consistent between 1000-1500mg per day. In the past month, I've had 2 steriod injections in the right ear and haven't had any severe vertigo, but have had dizziness. I also tried propanolol for 3 days to try to address the possible migraine cause, but quit taking it due to extreme fatigue, weakness, and lightheaded feeling. In my last trip to the ENT my hearing results were worse in my left ear than my right, the right ear improved but the left ear got worse since the steroid injection in the right. So, the ENT advised against the IT gentamicin due to having the disease in both ears, and as the next step and prescribed a course of oral steroids. Blood work was taken before the steroid course and the ENT will test it again to see if the steroids worked and he will refer me to a rheumatologist if so. He also wants me to get in to see a neurologist to help address the possible migraine cause, but it will take 7 months to get an appointment. The ESD surgery is still an option, but he has said it is up to me to decide which ear to have that in, which is perplexing at the moment. To my question: Can anyone share any experience with rheumatologist treating meniere's? The ENT said she might prescribe an autoimmune drug. This is interesting because I've had inflammation problems in my back, hips and neck for over twenty years, I'm now 47. I tested negative for the HLA-B27 marker for anklyosing spondylitis way back 25 years ago, but my brother has been diagnosed with AS and I've been taking NSAIDs for over twenty years for the joint pain and stiffness. Thank you for reading if you've come this far.
There was a man on the forum who was a,patient of dr derebery's at House and if i remember correctly she referred him to an immunologist. I believe his name was greg. You might search the old forums for immunoligist or something like that. Have you considered the antiviral route in an effort to leave no stone unturned? It has worked for so many who have seemingly different histories. Mot for everyone but for many.
Thanks June, I will see if my new ENT will consider an antiviral trial. Is there a medical research paper on antivirals that you recommend I show to him? I found the one by Dr. Gracek on this board, and it looks well researched. I think it would be worth trying, since I have bilateral and would like to avoid the ESD surgery if possible and the choice of what ear to operate on.
Yes, Cricket. Bring in the Gacek study. You'll have to stay on top of this and I know that can be difficult when you're with symptoms. Not only will you need to push for antiviral treatment but you should stay away from certain brands. If you can get namebrand valtrex that seems to be the best. Northstar seems to be working for me after 3 months. I don't know a whole lot about this but it seems that if you are bilateral you need to exhaust all non-destructive methods before you proceed with any destructive treatments. Best of luck.
Where are you Cricket? Dr Derebery at House in Los Angeles is tops. She does sometimes use antivirals. She also uses allergy treatment to take a load off the immune system. She is also the dr who sent greg to an immunologist i believe when she thought it was indicated.
Hi June, I'm 1200 miles north of LA, but I like my ENT and he has met with Dr. Derebery. I met with him yesterday and my hearing in the left ear has improved by 20 percent since taking a course of prednisone, so I agreed to take another course and see him in another week. If more improvement is shown he will refer me to a rheumatologist for a biologic autoimmune drug or maybe inject it into the ear. He's willing to prescribe me the Valtrex valcyclovir, but said it would likely not be effective according to the data available and even Dr. Derebery. On the other hand, it seems many here have seen positive results with antivirals and I will try that if the autoimmune cause can be ruled out, or I can't tolerate the new meds. I don't like taking the prednisone, but it seems to be helping. I always have doubts with anything I try since a positive result may just be due to natural variability of the symptoms. Time will tell.
Take the good news whereever it comes from. A remission whether you can prove it came from x or not is still a remission. Episodes are a bad thing because they put strain on the tiny ear structures and advance the permanent bad effects of the disease. During remissions, the ear is not undergoing that stress. Also, in my experience, nobody wants to make it sound like they are guaranteeing a cure for your mm. Because there is nothing guaranteed to work. If you want to have a chance at being one of thr lucky ones that antivirals (or anything else) work for, you probably have to say to your doctor 'you know, i know this may not work for me but i want to leave no stone unturned in the departmnt of relativrly innocuous drugs like antivirals, before i either resign myself to a life of progressive hearing loss and relentless vertigo or desrructive surgeries. ' put that way where you are not arguing theory and credentials with the dr and appealing to his common sense, you might be surprised what cooperation hounget. Besides, it is the truth. Nobody has the silver,bullet but a lot of these things work for some people. Good luck.