So, I had a doctors appointment a few days ago, and an ent appointment earlier today and both kind of told me I'm screwed because I'm bilateral and both ears are equally bad. More pressure/tinnitus/temporary deafness in my right ear, but more hearing loss in my left ear. Both stated that based on the severity of my symptoms, surgery would be the most effective option, but they won't do surgery on both ears. I'm on diuretics, but I have already low blood pressure so I can't take much of the medication and it makes me feel really weak. My ent wants to start me on a oral steriod? or something. Its a 10 day thing that is supposed to reduce symptoms. Has anyone tried this? Also, does anyone have bilateral menieres that can offer any advice? I'm doing the diet, and vitamins, and work outs, and nothing is working and I feel so defeated. Thank you!
I have one ear which has no hearing or balance nerve and one thar has cochlear hydrops . So surgery on the hydrps ear was out. Antivirals saved me. Try them if you havent already.
I have diagnosed with bilateral meniere's recently, the right ear 32% down in balance function and not good in hearing. The left ear has been fluctuating in hearing loss as well and at times worse than the right. I got motivated to find another ENT after having a really bad spring and summer last year in hopes of some other treatment, even surgery. I started with elimination of migraine trigger foods and didn't find too many surprises there, I've stopped taking caffeine, alcohol, chocolate, aged cheese, and have limited garlic, olives, citrus, and nuts. I brought my sodium levels up to about 1500 mg per day as they were too low as I was trying too hard to ward off the vertigo attacks I think. After I was still having major dizzy spells or vertigo every third day or so, I was given a couple of steroid shots in the worse off right ear. It reduced my bad episodes some, but my left ear was getting worse and showing meniere's hearing loss pattern. My ENT then convinced me to try a heavy course of steroids (Prednisone), since he said surgery is not a good option with both ears going down. The right ear may be near burn out, the left ear may be more problematic, so it was questionable any way which one to target. So, I started at 60mg prednisone and tapered the dosage over 2 weeks and went back. We found that my left ear was responding well and I agreed to another 60mg prednisone and taper. I went back a week later and found my left ear again improved dramatically and the hearing is nearly normal again in that ear. ENT said that this strongly suggests an autoimmune ear disease and has referred me to a rheumatologist. I will continue to taper the steroid and maintain a 10mg daily until I get in to see the new specialist. My major dizziness and vertigo haven't been presenting in the last two weeks, some mild dizziness, but no need to reach for the meclizine or valium. It looks like the rheumatologist will prescribe a biologic anti-inflammatory drug to address the systemic inflammation. I also have other arthritis symptoms and may have ankylosing spondylitis which is an autoimmune problem, so this diagnosis seems logical. I'm trying one thing at a time, and have also set up an appointment with a neurologist to address the possible migraine vertigo (though I am reluctant to add another Rx). I tried 80mg propanolol for migraine prevention, for a few days but had to quit as I felt way too fatigued and light headed on it. Anyway I had tried steroid and the diuretic years ago, but stopped them soon after, as I was not tolerating them well at all. It really increased my anxiety and gave me burning pains and I thought I was going crazy. So it was concerning to me to try the steriods again at a really high dose, but the doctor said to keep on them unless I went psychotic, so I bit the bullet. I found the steroid dose increase my anxiety and I've lost sleep and feel jittery and manic at times, but tolerable for a short time. On the plus side I do have a lot more energy to get things done and it seems to have improve my mood and well as the meniere's. Good luck LifeandOtherTragedies. Let me know if there is some other question I can help provide from my experiences.
I should also add to the above post that I intend to try the antivirals if it turns out biologic anti-inflammatory drugs aren't preventing the meniere's symptoms. My ENT will prescribe them as he sees no harm in trying, but isn't sold on them by available research. I also tried the JOH supplements for a short couple of months, but felt they weren't helping and making me feel queasy taking so many L Lysine. Maybe I didn't give them long enough to work, maybe the lemon bioflavinoids were producing migraine? I'm not sure. I was also presented with the possibility of injecting the biologic drug into the ear, which may be more effective and safer than taking shots.
When a flare starts and the pressure builds in my left ear, the waterfall/howl in my head affects all of my hearing. I presume it is all my left ear due to the obvious pressure sensation. Steroids did nothing for me. Almost 3 months of JOH and low sodium diet have reduced my symptoms substantially. Antivirals will be my next choice if I don't see further improvement with my current path. My view is try everything non-invasive before surgery as the surgery is no guarantee. I start PT next week as my old c5 cervical injury has also been flaring up. There is research that suggests c1 to c5 issues can cause menieres like symptoms. For me, this is a connection I can't ignore.