Meniere's Disease
Parent Q&A
Hello,
My husband suffers from Meniere's Disease and is being treated by Dr. Charles Limb at UCSF. I just sent you a direct message about our journey, but then I decided I should have posted publicly in case others are experiencing similar symptoms.
Tinnitus, aural fullness and hearing loss are all symptoms of Meniere's Disease. The 4th and most debilitating symptom is severe vertigo but that can be very sporadic with long periods of remission in between episodes, especially in the early stages of the disease.
So technically, you do have at least 3 of the symptoms of Meniere's Disease --though I really hope you don't have it because it's a wretched disease!
I would definitely see a specialist to find out more about your condition and possible treatments like steroid injections and restricting sodium, caffeine, alcohol and tobacco. Decreasing sodium is critical and really helped my husband control his symptoms in the early stages of the disease.
Here's a description of MD from the National Institute on Deafness and Other Communication Disorders (NIDCD), https://www.nidcd.nih.gov/health/menieres-disease:
"Ménière’s disease is a disorder of the inner ear that causes severe dizziness (vertigo), ringing in the ears (tinnitus), hearing loss, and a feeling of fullness or congestion in the ear. Ménière’s disease usually affects only one ear.
Attacks of dizziness may come on suddenly or after a short period of tinnitus or muffled hearing. Some people will have single attacks of dizziness separated by long periods of time. Others may experience many attacks closer together over a number of days. Some people with Ménière’s disease have vertigo so extreme that they lose their balance and fall. These episodes are called “drop attacks.”
Ménière’s disease can develop at any age, but it is more likely to happen to adults between 40 and 60 years of age. The National Institute on Deafness and Other Communication Disorders (NIDCD) estimates that approximately 615,000 individuals in the United States are currently diagnosed with Ménière’s disease and that 45,500 cases are newly diagnosed each year."
Good luck!
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Experience with Meniere's Disease while breastfeeding?
July 2003I have been diagnosed as having Meniere's Diesease, an inner ear disfunction that causes vertigo, fullness and ringing in the ear. I have had this problem on and off for the past 7 years. It has usually been associated with a cold but was once brought on by flying in a small, unpressurized plane. Attacks have been mild or a few have been really dibilitating. My ENT just prescribed prednisone to reduce the inflamation of the ear cannal and acetazolamide to reduce water retention. However, I am nursing and cannot nurse while the prednisone is in my system and am saving the other medication only for an emergency attack in which case I would have to give my baby formula or pumped milk. I was wondering if anyone had any experience with this disease and any natural remedies or alternative treatments to help ease the symptoms. I have read the posts and nothing was mentioned specific to my question. Thank you
I encourage you to get more information on the use of Prednisone while breastfeeding. Doctors discourage it, being conservative, but I believe Tom Hale's ''Medications and Mother's Milk'' concluded that it is fine. My local La Leche League leader has a copy; you can find your local leader's number from the LLL website http//www.lalecheleague.org/ Good luck. Jennie
I was first diagnosed with Meniere's disease in 1999, when my baby was a few months old. I saw a number of specialists, including ENTs, a neurologist, and and an allergist, before turning in desperation to an ad in the Chronicle by a medical group called Allergy Therapy Solutions. I am now symptom-free, and I recommend ATS highly for anyone suffering from Meniere's disease or asthma who has failed other therapies. The number is 888-738-3200. You'll reach an answering service who will put you in touch with Dr. Calenoff, the director. He interviews potential patients personally before they even come in for an office visit. They also have a website www.to-ats.com. maria
Acupuncture can be effective for Meniere's disease. Rest is also often important, which can be quite challenging when parenting an infant. I would find some good acupuncture recommendations (start with this list) and ask about their experience with this condition. Tara
How effective is allergy testing for Meniere's?
March 2002Does anyone know how effective allergy screening and treatment is on Meniere's disease? A company with offices in SF & Walnut Creek offers allergy testing & shots to help with Meniere's, as well as other things, but it is kind of pricy. Any other advice would be appreciated!
A friend of mine cut out all dairy which helped, and I was told to avoid salt to help with Meniere's, so it might make sense to do a more complete allergy screening. In my case, the vertigo turned out to be related to full-blown mono (Epstein-Barr virus). My doctor finally did a blood test which can culture the virus up to around 18 months after infection. It's taken me about 2 years to recover. Good luck. Anonymous
I'd like to get in contact with the person who asked about RAST testing for Meniere's disease through a company called ATS. I had hoped to see some responses to your post, as I too am considering doing this testing. If you are interested in comparing notes, sharing stories, etc. please contact me. Maria
Sorry for what you are going through. My husband has been going through something similar. ENTs that have helped him with further testing options and we recommend are: Dr. Steenersen at Stanford Health and Dr. Sharon at UCSF. Hope you get some answers and it gets better.
If you can travel across the bridge, try Dr. Jacob Johnson, who is an ENT with San Francisco Otolaryngology. Fantastic, smart doctor, UCSF adjunct faculty.