10 months ago I woke up one Saturday morning with a very loud roaring sound in my left ear. It was so loud, concentrating on anything else was difficult. It was very scary to say the least. After a sleepless night, I went to see an ENT who gave me a high powered antibiotic and a large serving of prednisone - starting with 60mg/day. The Dr. could tell I was pretty freaked out by this but didnt have a lot to say. The diagnosis was sudden hearing loss as I had lost over a 1/3 of my hearing from the low end in my ear. Not satisfied by this vague diagnosis, I started to research and found a Neuro-otologist. The predisone quickly mitigated my symptoms. After a few days the sound was down to minimal. Even the high pitched tinnitus that I had suffered from for years was down. I went to the new doc and was diagnosed with Cochlear Hydrops but it was clear I was on my way to Meniers. We went over my history thoroughly and apparently the occasional heading spinning episodes and the high pitched tinnitus were indicators on the trail. At the time I was feeling fine due to the prednisone. In his view, Cochlear Hydrops can be an auto immune problem made worse by allergies, which I also have, and definately sodium. In general, however, it can be a mysterious problem with no clear answer as why it happans or how to stop it. His only prescription was to take my allergy meds religiously, flonase+claritin, and eat a low salt diet (less than 1500 mg) with at least 64 oz. of water each day and take 1/4 pill of Maxzide (sodium eliminating diuretic). Fast forward to 2 days after my last steroid dose - roaring sound is back and at least 1/3 of my hearing is gone again. Over 9 months I went through cycles of roaring tinnitus and hearing loss eventually getting to the point where the roaring would not go away it would just recede. I tested my body in many ways trying to isolate what works and what caused problems. The number one culprit - sodium. One time I had a bad attack 3 hrs after eating a bite of cheese (over 400mg/oz). I decided it was time to get radical. Over a few month I drove my sodium intake down. I tried 1000mg/day at first. Not good enough. I now eat no more than 400 mg. per day and no more than 150 mg per meal. I still take the Maxzide. I am a label reading machine. I went through the supermarket and eliminated 99% from my food supply. NO fast food ever. Restaurants are tough - salad bar only or maybe a steak with no seasoning and steamed veggies or baked potato. Dont trust the cook. As a rule, I live in the produce aisle. It is difficult to maintain this level but one slip up and its in my ear. If I have a bad attack I begin a methyl prednisone dose pack (6,5,4,3,2,1) to shut down the autoimmune reaction. Living on this radical diet has resulted in ever decreasing symptoms to the point where I have been sound free for 2 weeks straight and the original high pitch tinnitus is now going down. I have lost 24 lbs. (i was not overwieght to begin with). I drink at least 64 oz. water and also avoid concentrated sugar, ie. fruit juice as too much sugar is related somehow. Absolutely no caffeine - tough to avoid chocolate. I have recently begun Immunotherapy to deal with my allergies. If you want to beat this problem you must be come a student of food and your bodies' reactions. The american diet is filled with sodium. The transition away from it is difficult. I eat Kind bars when I need to. I was eating an average of over 5000 mg. per day (which is the American average) and the human body only needs about 200. The good news is your sense of taste changes over time. I am thoroughly enjoying what I eat now as I taste differently. I would like a piece of pizza once in awhile but I am not willing to trade my hearing and possible Menieres disease for the 1200 mg. of sodium per slice. I havent eaten a slice of bread in 6 months (280mg/slice). Tobasco is my friend (30mg. per tsp) and so is Mrs. Dash and Benson's gourmet spices. When I can, I hit the farmers market and places like Whole Foods and I raid the no salt foods and spices. There is a growing supply of food with no salt avail. and many books on no salt cooking strategies. The bonus - it has been proven via many studies that a low sodium (under 1000mg/day) diet will add and average of 8-10 years to life span.
Update from Davegeorgia - It has been 3 week since my last post. I have had one attack/episode since. It lasted for 3 days. As soon as it came on I started a 32 mg prednisone course for day 1. 2x4mg. pills every 4 hrs. Day 2 of the attack I took 16mg - 1x4mg pill every 4 hrs. Day 3 I took 2x4mg pill and day 4 I took 1. I am trying to shorten my exposure to prednisone and this quick regime works. My suspects for why the attack happened: 1. I didnt drink enough water - it is key to hydrate and flush the sodium. 5-6 bottles per day. 2. I took the maxzide later in the day instead of the usual first think in the am - probably allowed a build up of sodium. 3. Drank too much sugar in Vitamin water. Didnt catch the label until it was too late. 23 grams - too much.
Its probably a good sign that it takes a combination now to provoke an attack. After a number of good days you tend to slack off. Cant do it.
Note: I also take a multivitamin, 500 mg. niacin, 1000 mg. of bioflavanoids. I am considering vinpocetine (vaso dialater) as it is prescribed in Europe. Please respond if you have any info.
Well I am on 1/2 tablet of Maxide in the morning. Have been taking it for 28 days now and need to get a potassium check next week. Have a 60 day perscription. Have noticed improvement in my congestion in my head and a general improvement in well being. Have stopped alcohol, no loud noises, wear ear plugs everywhere, trying to watch my salt intake. After reading your post I will cut down even more on the salt.
I have high pitched hissing in my left ear which goes up and down sometimes but mostly stays the same. I forgot to take my maxide the other day and noticed after a day the hissing cut down considerably...maybe 50% less. So I think the maxide causes the hissing to go up. Will wait out the 60 days then schedule a new hearing test. Not sure if the maxide is helping all that much now and would like to get off of it if possible. my mother had menieres when she was 40 or so. Wonder if its hereditary and will my symptoms get worse as time goes on.
Dont forget to stop intake of caffeine. I have tracked down several people who have very bad meneires. We all agree that its hard to tell what works for sure. Sodium reduction is the number one culprit of course. You have yo get good sleep. Put a fan next to your bed to white out the ringing and take Diphenhydramine if you have to. Drink lots of water throughout the day. About 8 oz. per hour to dilute and flush sodium. No alcohol as it is another diuretic that concentrates sodium in your body. Maxzide targets sodium while saving pottasium. I find the side effects very annoying, ie. many bathroom trips, woozy feelings, etc. I went to taking it only in the am and it improves the number of times you wake up in the middle of the night. Try to find the minimal amount you need. It wont stop any of you symptoms once they start. I think it lowers your body's hydraulic pressure to protect your ear.
update one month later: Have gone 3 weeks for the first time without an attack until 2 days ago. I slipped a little. Seems there were some home made cookies lying around and I had to try a few. This extra sodium combined with missing a few days of my antihistamines and slacking off on water intake is the difference and the likely cause. It was very loud in my left ear the last 2 nights. I have been using Valerian to sleep when needed. Works very well - you can drink it in tea form as well. Back on track and did not take steroids this time and the sound is down by 75%. Hopefully in the next day or so it will be gone. This could signal a new phase as it was taking weeks to subside in the past. My theory on this now is that it is some kind of "injury" caused by an inherent susceptibility (maybe genetic etc.) and a seamingly benign lifestyle. I was probably averaging 4000-5000 mg/day of sodium with an occasional beer etc. It first hit right after the Holidays last year with the associated maximum food, sweets, cocktail intake. Most people can deal with this lifestyle, but with carrying around some inner ear weakness or as a result of a virus I created my own personal train wreck. I dont miss the little alcohol I used to consume but it will be tough to keep the sodium down to my target of 400mg a day through the next several weeks. I am feeling more confident that I am not currently on the road to serious Menieres with its associated rotational vertigo.