New Diagnosis of Meniere's and Atypical Symptoms.

My husband has recently been diagnosed with Meniere's and has documented fluctuating low frequency sensorineural hearing loss. His "episodes" seem to be unusually prolonged and with predominant fatigue that almost seems like a viral illness (we keep testing for Covid). He gets aural fullness and marked decrease in hearing in his left ear and very mild imbalance sensations (some mild rocking and swaying). He doesn't feel super "dizzy" or have any visual symptoms, but he will nap repeatedly all day long. Last episode lasted almost 3 weeks, then two weeks feeling good, and now symptoms are back. He did have one episode of severe vertigo initially (back in December), but subsequently he has only had two milder episodes of vertigo (occurring in the middle of his prolonged episodes). We have seen our local ENT, and had a consultation with a neuro-otologist last week. The diagnosis of Meniere's was confirmed, but I haven't been able to get any confirmation that other patients with Meniere's present like this. It isn't fatigue following or accompanied by vertigo, it is fatigue with aural fullness and decreased hearing and very mild imbalance. I would appreciate any feedback. Thank you.

 

Thanks for sharing your experience, Karen. The good news is that my husband saw a specialist (neuro-otologist) and was started on Dyazide (diuretic) about two months ago. I also started being very watchful of dietary sodium and have kept his sodium intake to around 1500mg of sodium daily (takes a bit of work, and a challenge to eat in restaurants.) We were hopeful that this could make a difference, and he did go 6 weeks without any significant symptoms. Unfortunately, he just had two days of significant fatigue and aural fullness. He's better today, so hopefully this isn't turning in to another prolonged episode. The specialist has given some options for additional treatments, if the diuretic and low sodium diet don't seem to be controlling symptoms, but he is holding off for now since he had been doing well. The other options would either be an anti-viral like valacyclovir (off label use, but unlikely to have any adverse effects) or beta-histine (vasodilator used in other countries, available in the U.S. via compounding pharmacies). Hopefully you have found a specialist that is helping you with managing your symptoms. I found a good summary of various therapies and a patient-centered approach in the patient information section on the UCSF ENT clinic website (my husband is not being treated there, but I found their patient guide to be very helpful.) BTW, I noticed that this forum doesn't seem to be very active. The Meniere's forums on Reddit are quite active, and I have found some helpful hints there (eg about following a low sodium diet while traveling), but I prefer using a website that is a bit more selective in members and content. Thanks! And take care.

 

Thanks for sharing your experience, yellowboy. My husband has been on a diuretic and 1500mg sodium diet (and almost no alcohol) for about 2 and 1/2 months now, and he did have 6 weeks of being almost symptom-free. Unfortunately, he has now had about a week of just feeling generally unwell, fatigued/sleepy, bilateral aural fullness (increase from just left ear symptoms) and very mild, but real sensation of unbalance. We're going to contact his specialist about starting on the betahistine. As everyone on this forum is aware, it can be hard to know if symptoms are responding to a particular treatment or environmental factor, or if it is due to the unpredictable "natural course" of the disorder. I am curious to know what other members experience with diuretic, low sodium diet and betahistine is, eg how long did it take to notice an effect, and did they continue with the diuretic and diet when starting betahistine. Thanks.

 

Thank you EAOfficial for sharing your experience. My husband's specialist has offered to prescribe both betahistine and antivirals. He decided to start with the betahistine a couple of days ago, took 4 doses and has stopped it due to stomach upset. He was already in the middle of a sort of low/moderate episode of increased symptoms of fatigue, alternating aural fullness/increased tinnitus/decrease in hearing and now a sense of being off balance. We are getting ready for overseas travel to commence in 2 and 1/2 weeks and thought it might be worthwhile to add the betahistine since symptoms were breaking through the diuretic and low sodium diet. As you mentioned, it is hard to tell if an intervention is responsible for improvement in symptoms, as they tend to wax and wane. I suspect my husband will want to try the antiviral when we return from our travel.