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Medical Forum / Diseases and Disorders / Tinnitus / September 2007Meniere's Disease sufferers
Hello: I am looking for those who suffer from Meniere's Disease. I have been recently diagnosed but believe I have had this for as much as 10 years. Would love to hear from other MD sufferers so we can exchange stories. KK "KK" <koni@cox.net> wrote in part: >Hello: > [quoted text clipped - 4 lines] > >KK See my sig block below.  SignatureJim Chinnis / Warrenton, Virginia, USA Want to discuss Meniere's? See http://groups.yahoo.com/group/MenieresDG > Hello: > [quoted text clipped - 4 lines] > > KK Hi KK, In my case, tinnitus and Meniere's disease are strongly related. Normally, my T is very low. If I eat simple sugars like ice cream and cake, or highly salted foods like blue cheese, in about four hours, my T goes high and my left ear aches and becomes "heavy." It clears up in about three days if I keep my diet strictly to protein, fats, and low processed carbs like oat meal. I've always had a minor problem, but last August, I was hit with vertigo, hospitalized for four days, used a walker for a week and a cane for a week. I had CT and MRI to rule out stroke. It took about 3-4 months to get back to 95-98% normal. The follow up with the ENT resulted in the cause to be Meniere's disease. Simple carbs and high salt foods are the problem. I still have moments when vertigo happens, but only lasts for one or two seconds. If I have carbs like pizza, the T may only come up a little, left ear aches a little, and I will feel somewhat tired for a few days. There's more to tell, but that is the essence of it. How does this compare with your experiences? Do you get tinnitus that is related to Meniere's Disease? Dave C x-noi-archive: yes >>Hello: >> [quoted text clipped - 29 lines] > > Dave C I get tinnitus related to high carbs, too. There's a relationship between high carbs and adrenal suppression, too, which connects to the cortisol relationship to Meniere's I posted about. Insulin interferes with cortisol levels and delivery to cells. Vertigo, hearing loss and tinnitus are associated with cortisol suppression. Hence, high carb diets can worsen or may even cause Meniere's and T. Susan Dave: Thanks for answering me. I wasn't sure if I would see any other people with MD on this site. I have T (as you call it) very bad - but I have it in right ear. My ear seems to "short" out at times. The T seems to be triggered by loud noises, changes in barometric pressure, gravity or if I eat much salt. (Currently, I am restricting my sodium to below 1250 a day, but still can have attacks through it). The T continues to build, and build, and build and then my ear will "short" out, or stop hearing for about 1-2 seconds. I don't tolerate "constant" pitch noises very well, and even the fan that hubby and I sleep with can cause an attack. I sleep about 50% of the time with my iPod on as low as I can get it (and even that is too loud sometimes). I listen to very slow peaceful music that blocks out the ac or the fan. Even my computer at work sometimes can trigger an increase in T and sometimes can trigger a full attack. I have never had any episode as serious and scary as yours! Questions: Do you either feel "pain" in your ear? Sometimes it is hard for me to decifer if it is intense pressure or pain? How long have you had T? I believe I have had MD for about 5 years at least, but was just diagnosed in June of this year. Do you have light sensitivity with your T or MD? Sorry, I'm so full of questions, and there doesn't seem to be much information about MD that I have found. I appreicate your time, and look forward to talking with you more in the future. Koni (pronounced Connie) >> Hello: >> [quoted text clipped - 29 lines] > > Dave C > Dave: > [quoted text clipped - 19 lines] > > I have never had any episode as serious and scary as yours! Hi Koni, I have always had some tinnitus but the vertigo issue a year ago made it become more prominent. As I mentioned, all the tests were negative (thankfully) but the vertigo issue also brought the Meniere's Disease to the front. > Questions: > Do you either feel "pain" in your ear? Sometimes it is hard for me to > decifer if it is intense pressure or pain? I rarely have pain but it feels more like pressure or heaviness. My T sounds like a hiss. But sometimes I get a ringing that last only for a few seconds. > How long have you had T? I believe I have had MD for about 5 years at > least, but was just diagnosed in June of this year. I may have had it for years, but since the vertigo episode, it has become an issue. Because the T kicks up with simple sugars and salt, the END doctor said I probably have MD. They really don't know, or the ENT was not interested in going further with it. If I have a double scoop of ice cream, my T goes extermely high with low grade head aches and always feel a little sleeply or groggy until it passes after 3 or so days. I have pretty much settled down to the fact that if I back off on carbs in general, I feel much better. > Do you have light sensitivity with your T or MD? No, I do not have any light sensitivity to T of MD. However I do have sensitivity to, of all things, niacin or vitamin B3. My cholesterol is on the high side of normal via dieting, but my family doctor would like to get my HDL higher, so he suggested 500mg of niacin supplement per day. That is about 1000 times the daily requirement. I took it for two days, and my T hit the roof. I stopped it and it took about 3 days to get back to normal. I tried it again a month later with the same results. Conclusion is that I am not tolerant to niacin. Also, a few years ago I started taking Lipitor for cholesterol control, but after two days the same thing happened; T=high. My cholesterol is OK watching what I eat. All that shows that everyone is so different, aren't we. The link below is one on Meniere's Disease and vertigo that you may find interesting. http://www.dizziness-and-balance.com/disorders/menieres/menieres.html#whatis It has taken me quite a while to figure things out. The ENT doctors don't seem to know a lot about some of these things until there is a 'hard' failure for them to be able to hands around it. Hope you can figure things out. Dave C. Wow - this just makes me realize that everyone is soooooooo different with the issues that we deal with. I was sent to a more intensive ear doctor, (higher than an ENT) as like you, the ENT was nearly useless. (I just can't remember his specialty at the moment. Do you suffer from confusion? Are you more tired after a bout of T or MD? I have seen so many doctors for this before I finally got a diagnosis. Your niacin issue - wow, that is a different one. I'm having a minor surgical procedure done tomorrow (non-ear related) so may be a little slow in answering. KK >> Dave: >> [quoted text clipped - 80 lines] > > Dave C. On 8/7/07 6:19 PM, in article ScadnZHV28rIhyTbnZ2dnUVZ_gydnZ2d@comcast.com, >> Hello: >> [quoted text clipped - 30 lines] > > Hi Dave. There are several Meniere support groups including alt.support and yahoo. Meniere's can have Hearing Loss Tinnitus Vertigo Sensation of pressure in the ear. You can have all four of less than four or even one symptom. Best wishes, Mruray Grossan, M.D. Www.earaid.info > On 8/7/07 6:19 PM, in article > ScadnZHV28rIhyTbnZ2dnUVZ_gydnZ2d@comcast.com, [quoted text clipped - 14 lines] > Mruray Grossan, M.D. > Www.earaid.info Hi Murray, thanks for the suggestions, I'll check them out.....always looking for resourses. Dave C. > > On 8/7/07 6:19 PM, in article > > ScadnZHV28rIhyTbnZ2dnUVZ_gydnZ2d@comcast.com, [quoted text clipped - 19 lines] > > Dave C. Hi Dave, My experiences: I started having severe vertigo about 30 years ago, with episodes every 3 days or so. Monaural MD was diagnosis. No tinnitis; premonitional aura of hearing loss about 1 hour prior to attack, enough time to drive home and lie down. No evident relationship to salt intake or any other dietary situations. It lasted about 8-9 months (very disconcerting, as I was trying to work on a masters degree at the time). It went into remission (?) with about 1 minor attack per year until about 7 years later when I had an aura, no vertigo, but lost 80% of hearing capacity in MD ear. About 2 years ago, I started having 1 day attacks once a year. My current physician told me that MD never really goes away. I never heard that before, so I don't know if it's true for everyone or just some. Guess you just gotta roll with the punches. Paul > Hi Dave, > My experiences: [quoted text clipped - 15 lines] > > Paul Hi Paul, this is a little long, but maybe you and others might find it interesting........ My tinnitus also comes and goes, and after a year, I found, through experimenting, that it comes on after eating ice cream (1/4 to 1/2 cup) or chocolate (12 M & M's). I thought it was sugar, but maple syrup (2-3 tablespoons) on oat meal is OK. I have a log of trigger foods and the level of my responses to them. In my case, there is a delay of 4-8 hours until the tinnitus starts. Then it stays for about 72 hours then diminishes. I figure the 72 hours is what it takes to go through my system. If I over indulge on chocolate, which I have a while ago, the tinnitus sets in joined with vertigo especially lying down. Not much fun. A year ago, I spent 4 days in the hospital with a bad attack of vertigo, couldn't stand, etc., then for a week at home, I needed a walker, then a cane for week more. The ENT on my case was not too helpful. In my readings, and most recent reading "A Consumer Handbook on Dizziness and Vertigo" edited by Dr. Dennis Poe, cited that in cases where thing like sugar bring on an attack, there may be two responses: immediate and one with a delay like my response. Just yesterday, I had only 6 M & M's, and tinnitus gently came in for a day, and today it is gone. His book is extremely easy reading with a chapter or two on Meniere's Disease. The book is available in most libraries, and I have mine renewed every two weeks for six weeks now, and I now have what I need from it. I don't know if I have Meniere's Disease. The ENT said I may have, and when I tried to nail him down, he would answer my questions, but it is a case where I don't know what questions to ask. My friend a dentist dug into some of this and he was most helpful. The ENT did give me a CAT and MRI both of which were negative. In Dr. Poe's book, Meniere's Disease may not be cured, but he has presented the topic with ideas. It is not an easy road with MD, but I figured if I could understand it, I might come up with what triggers it for me. Hope you can manage this issue. Regards, Dave C. http://www.google.ca/search?num=30&hl=en&safe=off&sa=X&oi=spell&resnum=0&ct=resu lt&cd=1&q=Meniere%27s+manganese&spell=1 > Hello: > [quoted text clipped - 6 lines] > > KK
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