Greg's Discussion Group Archives
Page 5

December 21, 2000 to March 6, 2001

re: MD in the family Martyann 9:01 am saturday december 23, 2000
I am very curious about this also. In my case there are several members in my family including myself who have Fibromyalgia, thyroid disease, and osteoathritis (all together) but I'm the only one with MD that I am aware of. These other disorders are all immune related disorder's. In my case the MD symptoms are apparently brought on or at least affected by allergies, also immune related.

Thank You All for the Help Rick 5:33 pm sunday december 24, 2000
Back in August I was asked by one of the members in our church to write and perform the musical score for our Christmas Play. I told her that I felt honored and I agreed to do it but I also let her know about my Menieres and that if I got a vertigo attack at the time of the performance, there was no way I could perform and the play would have to be postponed or cancelled. I told her that I was experiancing about 5 attacks a week and that I was dizzy all the time. Up until I told her this, I had kept my MM a secret except to my family because I hate people making a fuss over me. We decided to make a tape backup in case I did get a vertigo attack, the show could go on. It was at this time I started searching the internet for information on MM and ran across the different message boards and the wonderful people that post messages there. I failed to tell the Director to keep my MM a secret and she put me on all the pray requests at the church. It was then, through one the message boards, I found out about the allergy connection and MM. I then realized the conincedences of my attacks and the consumption of wheat products. I eliminated wheat from my diet, started taking antihistamines, and I have had one attack in the last ten weeks (at least I think it has been ten weeks, I can't keep up). A significant change from 5 a week to say the least. I've also got my energy back. I haven't felt this good in 2 years. All I could do after work was sit around a sleep, it's so good to be myself again. I still have a few dizzy days here and there but life is so much better. I hesitated to write this because there are so many of you that are suffering on a full time basis more than I was suffering on a bad day and I didn't won't it to sound like I'm bragging. What I am saying is THANK YOU ALL. Without my friends here at the different message boards and the prayers of my church, I really felt I would have never improved and would in all likliness lost my job. The play went great and everyone loved the music ( at least they were kind enough to tell me they did). No words can express the gratitude I have for all your help, this will be a very, very special Christmas for me. Thanks again and Merry Christmas.... Rick

re: Thank You All for teh Help Lori 8:24 am wednesday december 27, 2000
Congratulations Rick! That's a very hopeful story. I'm working on the allergy connection too. I think it will be the key. Lori

I'm over Meniere's!!! Rhonda 6:58 pm thursday december 28, 2000
Well, I have been diagnosed with this beast since October 18 of this year, but have been having bouts of vertigo since about 1995. I always thought it was anemia or something related. I am now 25 years old and am the only person in my family with this horrible and hard to understand disease. I have a three year old son, and am in Nursing School. Can you imagine the problems I have with this Beast!!! I have recently had two vertigo attacks in the past month and a half. I believe I have had so many attacks that my balance is forever lost. I tell you, I can be sitting still, and my body rocks back and forth. It's like I'm losing it altogether! I have the memory losses, and am afraid of being with my child sometimes for fear of having an attack. This disease has really messed my nerves up and I have never been a calm person to begin with. I guess I am just looking for someone who can relate to me! Please reply, ANYONE!!!!!!

re: I'm over Meniere's!!! Rick 0:14 am friday december 29, 2000
Rhonda, Iurge you to read all the posts at this site and other message boards. If this is the only one you know of, e-mail me and I will send you the URLs to several others. They have been such a help to me. I've found that food allergies were causing me the most grief and I would have never considered this If i haven't have read it on one of these message boards. There are so many things that can cause vertigo, so make sure you've researched everything you can. There's lots of people here with BPPV, and there are certain excercises to help with that. Others are helped by lowering their salt and others with diurectics. Start keeping a log of when you feel good and when you feel bad and everything you were doing beforehand. You may find a pattern of behavior of this disease and learn to control it and it may help someone else that reads these posts. You have definately come to the right place for support, I was surprized and saddened at how hard it affects some people that I've met here and at other message boards, and it's them who offer the most support. I admire them so much. It had become so bad before I found the allergy connection that I was on the verge of losing my job because of the attacks I had at work and my missed days. Good luck.....Rick

re: I'm over Meniere's!!! Lianne 4:35 pm friday december 29, 2000
I can relate!! I also have children a 5 year old and a two year old. It gets more and more difficult each day for me. I was diagnosed just 4months ago. I too am fearful that I will have an attack when I am alone with my children. I'm lucky to have a neighbour who understands and will help out with the childern should something happen. Sorry to hear of your suffering let me know how things are going

How does Serc Work? My Theory Rick 9:49 am wednesday january 3, 2001
I know for sure that Histamine causes me to have Vertigo Attacks. From what I've read Serc is basically the same as Histamine. I read a post by someone that when they increased their dosage of Serc it caused a Vertigo Attack. It also warns people with asthma not to take it. I read that scientists believe the reason Serc works is that it increases blood flow to the inner ear. I would like to through out another possible reason: Does the Serc work the same way that Allergy shots work? By keeping a level of histamine in the body, the body becomes adjusted to the histamine and compensates for it? I think this would explain the vertigo attack in the one individual when they up'ed their dosage and would also explain the warnning for asthma sufferers. I think this also goes along with other research that allergies, especially food allergies, are a cause of vertgo in 44% of MM sufferers. I've seen a remarkable change in my symptoms since I removed wheat, gluten, and other simular grains from my diet. Therefore it seems we have two choices: 1. Prevent the production of histamine and the effects of histamine by eliminating the causes of histamine release and taking antihistamines. OR 2. Taking medications like Serc to build up the body's immunity to histamine and possibly allow us to eat the foods that have been causing the attacks. I now carry with me Primetine Tablets and the next time I have a vertigo attack, I'm going to take them to see if they will shorten the attack. It should if the attack is being caused by histamines. I'm interested in any comments.... Rick

menieres syndrome mandy 8:06 am friday january 5, 2001
hello to all fellow sufferes.i have just been told i have this horrible desease sept 16 2000. i had constant pain in my left ear with a fullness sensation for 12 months which eventually led to a ruptured eardrum (instant pain relief)but didnt help with hearing loss each visit to gp revealed no infections and was sent away feeling very depressed and at a loss as to what was wrong with me.then the dizziness set in real quick,unbalanced,nausea,headpain,ect ect ect......trip to ent finally gave me answers but bad news was theres no cure.started a course of serc which brought some comfort but now on stemzine which is fantastic!!!!.at least the sound of a train outside my window has gone!gotta go back to ent feb 2 2001. unlike others i have read on this site ive had no needle tests is this a good sign?hope so! any info would be greatly appreciated please email me at colakidtwo@yahoo.com.au good luck to all and keep smiling!

re: I'm over Meniere's!!! Lori 7:17 pm friday january 5, 2001
Hi, Rhonda. I can relate to your situation. My MM started becoming a real severe problem when my daughter was about two. I had not heard of Meniere's at that time and I went through all kinds of anxiety and fears - like you, I was afraid when I was alone with my daughter, because I felt so out of control and unsteady. It's a tremendous help to stay in touch with other sufferers on the board. Somehow, hearing other people's stories help. I felt for the first time that I wasn't alone, and it helped me be less preoccupied about what kind of horrible illness I might have. I'm also finding that environmental and food allergies seem to be very involved with what kind of a day I have. I'm almost guaranteed to have a problem if the weather is very damp or humid or if the mold spores are high. Eating daily is absolutely out of the question, and I'm trying to get to the bottom of what grains may be a problem. Hang in there and stay tuned! Lori

Symptoms of Meniere's Phil 8:27 pm saturday january 6, 2001
I am 27 yr's old and in the Army. I have been having hearing problems and loss of balance for about five years. For the last year i have had a CONSTANT tingle in one ear and vertigo attacks a couple of times a month. At least once a week my left ear "shuts down". When I first started having these problems my Dr. told me i had eustacian tube blockage and not to worry about it. Every year i pass my audiology exam with no problem although the last one i had was borderline. I recently picked up a pamphlet on menieres disease and i am overwelmed with the diet changes that are recomended. I don't know if this is what i have but it seems like i have some of the symptom's. Are there any studies being done with magnets as a treatment or any other natural treatment. thanks in advance.
Phil

Question about Vertigoheel Martyann 9:14 am sunday january 7, 2001
How long does it take before you should feel some results from the Vertigoheel? I have been taking the herbal equvalent after a recent attack and can't seem to see any difference. The form I am using is a spray you use every 15 minutes during an acute attack. So far I just feel like I normally do after an attack, very slow recuperation, lessening of symptoms over a period of a few days.
The only other explaination is that this attack may have been caused by my hormone replacement therepy, which is natural plant estrogens. As I am on a restricted diet and have to take antigen shots for my allergies taking this type of hormone replacement was an iffy thing. Couldn't figure out why I was slowly becoming ill. Noises gradually increasing to dull roar, generally not feeling well, increasing dizziness untill I had a full blown attack. The only thing that was different was the hormones. Didn't register on me that it could be the estrogen because I had been on it for about 3 weeks, not realizing it takes a while to get into your bloodstream. I haven't been off of it but a few days, so I can't tell if that was the problem or not.
In any event it is taking a while to get back to normal and at this point the vertigoheel doesn't appear to be working.

Sat. evening news Martyann 9:36 am sunday january 7, 2001
Did anyone see the segment on the Sat. evening news last nite about Meniere's? Sorry I don't know what network as my husband called me in to watch it. The suggestion there was that even though the cause of Meniere's is unknown they suspect an infection or allergies as the culpret but that no two people are the same and that treatment is gear to each individual. The individual interviewed is being treated for allergies and is on a restricted diet.
My doc keeps telling me that as the general rule that most information and treatment given out by many doctors are outdated. At this point I am also on a restricted diet and taking allergy shots. There has been vast improvement but I still have problems.
I am glad to see that Meniere's is getting some news coverage. Maybe with more awareness there will be fewer people out there going without a proper dx.

re: Question about Vertigoheel Rick 11:15 am monday january 8, 2001
I can't help you with the vertgioheel, but from what you said in your post, I would be looking at food allergies. I have the airborne allergies like you do and I take flonase instead of the shots. I used to take the shots and the worked great, but the HMO I'm on now does not cover them. But what I found was that wheat, gluten, flour, starch, oats, and barley were causing 90% of my vertigo attacks. I'm not sure what the normal symptoms of food allergies are, but I never suspected food allergies because I never had any other reaction except the vertigo and dizzies. What has been great, is that after I eliminated all the above from my diet, the daily dizzies went away ( brain fog). It was harder than I thought because even the vitamins I was taking were in a starch base. I had to find some that were in a corn starch base. Since it was actually the Histamine that caused the vertgio, anything that is causing a histamine release could be giving you problems. The report I read said that corn, eggs, and milk were very comman triggers. Hope this helps..Rick

re: Question about Vertigoheel Martyann 8:13 pm monday january 8, 2001
I've elimentated every thing I'm allegic to. Still having problems.Like you finding vitamens is hard. Doc gave me some that I can take. I'm allegic to yeast (which is in everything)corn (also in everything), wheat, rice, milk, beef,chicken,pork, potatoes, garlic, onion, citrus, banana, tomatos, lettuce,advacodos,and strawberries. Doesn't leave much! Thanks

re: Question about VertigoheelRick 8:58 pm monday january 8, 2001
Bless your heart, what do you eat?
Rick

re: Question about Vertigoheel Lori 7:40 am tuesday january 9, 2001
I also have allergies galore. I think it's important to avoid them all, once you've figured them out. I have recently joined one of Gary Null's health support groups in NYC. (He's a health activist/scientist who has a radio show on WBAI and is rather popular here in New York). We're using a lot of green juices to detoxify, red juices for rebuilding, organic vegetables and fruits, fish, no meat or dairy--which is good for me because I'm allergic to dairy big time. The protocol calls for getting off caffeine, refined sugar, no gluten, etc. I haven't finished the program yet. I'm hoping to be able to eliminate the food allergies. I'm taking shots for the very problematic environmental allergies. I just have an instinct that the allergies and the MM are inextricably intertwined. I also think that at some point I'll hit on a nutritional deficiency or something. I also have a mild case of Tourette's, which is strongly linked to allergies as well. Somehow, I think they're all connected. I'll keep the group posted as to any progress with the protocol.

re: Question about Vertigoheel Martyann 5:44 pm tuesday january 9, 2001
Intresting comment about your TS. My son has TS and I strongly suspect my youngest brother has undiagnosed TS, and severe allergies and ashama as a child. I do notice my son seems to have more problems when his allergies are bothering him, but getting a 15 year old to follow any protocol is a joke. I do good to get him to take his meds!!

re: Question about Vertigoheel Martyann 5:57 pm tuesday january 9, 2001
My husband jokes that they should just hook me up to an IV. My vet told me about a totally non-allergenic dog food they have produced, I decided that I might try that!! I have to rotate the things I can eat, as they did not test for absolutely every thing. This way we can monitor what we may have missed. Fresh vegetables, seafood, dry beans and nuts (no peanuts) are a few of the things I eat. Spelt is a grain that is being used alot as an alternative to wheat. There is a spelt flake cereal that is pretty good. The spelt bread (wheat and yeast free) is not very appetizing, but it can be masked by what you put on it. Buckwheat is good and I make buckwheat and pecan waffles with pure maple syrup. Vitasoy Vanilla Delight Soymilk is pretty good. The hard part is dairy as I love milk and cheese. That and garlic and onion. But my dear husband is a genius with spices and has come up with some very tasty meals. The only problem is he isn't always available to cook for me. I miss sweets alot, but hot cocoa made with soymilk and Mexican coca sometimes helps with the sweet tooth or a baked sweetpotato with cinnamon and sugar. It just takes some thought and prepration. It's not easy and when my husband is out of town it's harder as the kids just as soon eat pizza and I'm not incline to cook only for myself. But in the scheme of things it could be a lot worse. I'm just glad after 2 years of suffering and gradually getting worse, I finally found a doc that had some answers.

re: SHUNT SURGERY HELP!!!! Roberta 11:01 pm wednesday january 10, 2001
I had the surgery in the late 70's and have been doing just great. Before the surgery, I was totally confused, so nauseated that I couldn't brush my teeth - much less eat. Dr. Gale Miller in Cincinnati, OH performed the procedure. I really didn't have any choice. I have now been diagnosed with BPPV (benign paroxysmal positioning vertigo) could either be related to the Meniere's or to my Lupus. For anyone that is really desperate, I would recommend the shunt if it is feasible.

Questions! suze 3:12 pm sunday january 14, 2001
After about a year of trying to figure this thing out, the DR. said "Hey, we haven't tested you for Meniere's" so I'm in the process, but the more I read, I think we've found my problem. I have some questions 'tho -
1.does anyone else seem to have BPPV AND Meniere's? I seem to have two different sets of symptoms-the turning over or (especially) looking up and getting dizzy, and the occassional major spin that makes me sick for several hours that I have to sleep off (which on one occassion, was related to looking up!). Some days I can look up-or maybe it's in how I do it, I'm not sure.
2. Initially I wrote down everything to see if I could figure it out, and the only consistency seemed to be that it usually (not always, but 90% of the time) proceeds my period. Are other women finding the same thing?
3. Has anyone else found a correlation to greasy food? (which almost sent us in the GI tract direction). I'm unsure, but it seems when I mess up with my general tendancy to try to eat healthy & go out & have a bloomin' onion or some such thing, it gives me a flare up.4. What would be the best test to get a differential diagnosis between MD & BPPV? Would it be the ENG?
4. I have always been sensitive to car rides & swings etc. Have others found they always had a tendancy toward dizziness?
5. At first I thought I didn't have the tinnitus symptom, then in the early morning quiet I thought gee, maybe they're talking about this low ringing-I always thought everyone had it-like hearing the blood in your ears or something. Is this what it is? ...I think that's enough questions for now-glad you all are here.

re: Questions! Rick 3:45 pm monday january 15, 2001
1. When I have the dizzies and brain fog, position plays a big role. I usually would get an attack when I went from a downward looking position to an upright/ forward looking position. But when I'm feeling good, I can ride any ride at an amusement park except the spinning ones. 2. Keep the log going it may take a while to find a pattern. It took two years before I found out that wheat/gluten was causing my latest problems. I've read that a lot of women have found the same correlation to their monthly. I've also seen the same correlation, but I think is was the stress for fear of my life. 3. I found out that food can cause problems. The major one was wheat and oats. Milk and aspertame are still under still suspects. 4. Don't know. 5. My tinnitus goes from a roaring noise like wind to a high pitch tone.

re: Sat. evening news Matt Leddick 5:54 pm monday january 15, 2001
I heard about this news piece just yesterday and found this(Greg's) website today. I would love more details on this news item because the idea that corrected diet can minimize symptoms may be the key to my Meniere's problem. If you can remember the network I will pay for a transcript and put it on this site for everyone. RSVP
Matt Leddick
805 686-9564

re: Sat. evening news Martyann 12:05 pm tuesday january 16, 2001
Sorry I don't know the network as I wasn't watching TV that nite,just stepped in to see the segment on Meneires. The program did feature the Ear House in LA which I have seen in research I've done. On Dr.Gwen's Meneire website I have seen this clicnic mentioned. Check the links here on Greg's website. Sorry I can't be more help.

re: Sat. evening news Martyann 12:11 pm tuesday january 16, 2001
Just did a search under "Ear House" and pulled up lots of info when searched that site for allergies. Give it a try.

re: Sat. evening news Matt 10:26 am wednesday january 17, 2001
Martyann,
The Earhouse Clinic is here in LA near me. I'm in Santa Barbara. Do you have the website address for them? Also I understand another excellent place for treatment for Menieres is the UCLA medical center for hearing disorders.
Matt

re: Sat. evening news Martyann 1:42 pm saturday january 20, 2001
No Matt I don't. I just did a search on Google under House Ear Clinic and it came up. If you can't find it let me know.

Meniere's\seizures julie 1:34 pm friday january 26, 2001
I was wondering if anyone else who has meniere's has seizures as well. I have been diagnosed with pseudoseizures, which I don't think is true. Of course I have been labeled as crazy, psychosomatic, etc. And finally yesterday I was diagnosed with Meniere's, after three years of hell. I am wondering if the episodes cause this seizure type thing as well. Meniere's explains about 90% of my symptoms, and I am wondering if there is a link with these psuedoseizures as well. I get extremely confused and am at times unable to talk during an attack. I have started a journal to try to figure things out. How do you do your journals? Do your write down food and everything, I know I have an intolerance to milk. I am hoping that I can figure it out and stop this torture. It is cool to have this site, I have felt almost inhuman for a long time, and with this diagnosis I feel a major breakthrough.

re: Meniere's\seizures Rick 0:23 am saturday january 27, 2001
Food allergies cause me to have vertigo attacks, so write down everything you eat and anything else.
Rick

coping strategies for air travel Pauline 0:38 am sunday january 28, 2001
I was diagnosed with Meniere's 2 yrs ago, but I've had it for much longer I'm sure. I don't have the major spin outs people commonly describe, but I do have the ringing in one ear, and the sense of being "unbalanced". I have had the ear fullness and 'fuzzy hearing'. Most of the time I can avoid the types of motion that trigger the sensations, like going down in a lift getting out of bed the wrong way and walking on a suspended walkway.
I have to fly sometimes for work, and usually I take Stemetil to control the nausea, and for a short flight, it works, as long as we don't hit turbulence. I'm about to take a longer flight, 10 hours, and I would really appreciate some advice from others who have trouble with flying about how they cope with the sensation of being unbalanced & the nausea. The worst for me is when the descent begins. I feel like I'm being thrown forward in a nose dive, even though I know that I am not. I've had some strange looks from fellow passengers when I have to put my hands on the seat back in front of me to retain my balance.
Any tips?

re: coping strategies for air travel Rick 9:22 am sunday january 28, 2001
I take benedryl with a decongestant, motion sickness medication, and the most important thing I use is Afrin Nasal spray. The nasal spray is the only thing that will open up my eustation tubes enough to equalize the changes in pressure. And even then I usually have to help my ears to equalize. The longest flight I've been on is about 4 hours. Good Luck..Rick

Meniere's Fran 3:37 pm monday january 29, 2001
I am so thrilled to finally find someone who really knows what I am talking about! I have only had my computer about 2 month so I am really trying to learn "things". Please excuse my errors. How delighted I was to recieve an e-mail from Greg and the wonderful Web site. I had no idesa all this support was available. There are many questions I wish to ask--is that o.k.?? One thing that is more bothersome for me at present is the inability to focus. I am getting my eyes re-tested tomarrow so will be interested in the results. How much niacin do u take? One Dr. says"250 mg" and another said "500". As an old nurse I woried about taking Valium. Mine are 5 mg. I take it only when I really need to in order to not go crazy with the noise in my head. Some days I need three and then agin I can go for days without any. Also have Meclizine, Dyazide. I have not heard of serc -any more info on that? Another is Stemzine? Perhaps I shoukd not make this any longer so if anyone out there has any more "things" they wish to share it would mean so much to me. I thank u for time, amd understanding as well as sharing.I so love to play golf, rxercise, walking as well as I love parties but find I am becoming more and more withdrawn and afraid at time to commit to engagements for fear I won't be able to make them. Hoping to hear from anyone who wishes to share becsuse I care about u too.

re: Meniere's Rick 5:54 pm monday january 29, 2001
Fran,
I don't have any answers about the niacin and I don't take valium, but I did want to mention allergies. I've had MM for 17 years but I started having a lot more problems the last two years. I finally found out that it was food allergies to wheat, gluten, flour, starch, oats, barly and malt. I just wanted to let you know so you could check this out while you continued on the treatment your on. good luck..Rick

re: I'm over Meniere's!!! Sondra 5:00 pm tuesday january 30, 2001
I have 2 children, 5 months & almost 3. I have also been afraid at times to be alone with them. Especially after my first was born. When she was only a couple months old, my mom had to come over every day and help me. I couldn't even move to feed her. Now, i haven't had a severe attack in a year or so. Nursing this baby and running into walls, but no major attacks - like a semi- remission. Only within the last couple weeks has it started getting worse.
I am almost 27 and have had this since June 1992. At first, I had no clue what was going on. After the many tests and physical therapy from cara accident that triggered this disease in me, they said Meniere's. But after several years of going to a couple text-book ENT's, I am treating myself, Thanks.
I haven't had to be on meclizine or dieuretics in a couple years. The funny thing about this disease is that everyone seems to have some different and some the same symptoms and the same goes for the symptom relief-when we can get some. I personally have constant tinitus (ear ringing), sometimes very loud and ranging from one to about six different sounds. I have "brain fog" in that I can't hardly think straight and zone out of conversations a lot. I have lost 75% hearing in affected (left) ear. I get depressed a lot but am currently fighting it well.
How do I control Meniere's for now? I watch pretty much EVERYTHING I DO. I have to watch the stress level and keep it LOW. I really watch the salt, sugar and caffeine in what I eat. Regular exercise seems to help. No carbonated products for me. I take Tylenol Sinus/Allergy regularly. And a vitamin, too. I drink lots of fluids and try to eat at regular intervals if possible. I try to get all the sleep I need and try to rest and not get too fatigued. I haven't found out how to get rid of the fullness feeling in ears. Avoid what your allergic to and cigarette smoke, too. Which of these things really helps? Your guess is as good as mine! Well, sorry this got so long. Hope you feel better. Don't forget your not alone in how you feel. It may vary, but I bet you'll get the best support you can find on-line. We have the invisible symptoms and other stuff too.
Much luck to you. Sondra

menieres in both ears now? Sondra Gerardi 5:10 pm tuesday january 30, 2001
I have had Meniere's since 6/92. I have ringing and fullness in both ears, but thought I only had Meniere's in left ear since it gets several different rings/sounds and I've lost about 75% hearing in left, none in right.
The last few weeks, there is a significant increase of ringing in right ear. It is so loud and my ear is hurting as bad as the left one. And when it starts up with the ringing I really could go crazy. I thought I had it bad sometimes before. I have been considering myself in a semi-remission because although I run into walls, can't hear well and have the brain fog and fullness, etc., I have had no drop or major attacks (like with throwing up and entirely losing all balance for hours, days, weeks).
Has anyone else had similar? Does anyone think I shouldn't worry to much, or should I? The right ear's constant loud ringing is random and so far infrequent (like 2-4x/day then not there for a few days).
AlthoughI think it's useless due to past experience w/ENT's, I have an appt. to see a new ENT at end of Feb.

re: I'm over Meniere's!!!Rick 9:46 am wednesday january 31, 2001
Wow, Sondra, our sysmptoms are almost completely identical. So close that I thought I would offer this one thought. It sounds like you've already discovered the allergy connection, but with myself, I was able to get rid of the brain fog by eliminating wheat, gluten, oats, barley, malt, and aspertame. You may be allergic to something else and a lot of people are allergic to milk and eggs. I noticed that I, like yourself, got rid of the vertigo attacks with the allergy medications but I still had the fog. The fog didn't go away until I quit eating these foods altogether. It was hard to find this out because I had no other typical allergic reactions to these foods so I didn't think I was allergic to them. No rash, no sneezing, nothing but fog and vertgio. You may have already tried this because it sounds like your really up on this disease, so please excuse this message if you have already been down this road. I just couldn't keep from replying in the case that it might help...Rick

re: menieres in both ears now? Rick 12:33 pm wednesday january 31, 2001
Sondra,
I would research the Web for Tinnitus sites. I haven't done it in a while, but the last time I did, there was lots of good advice. Here's one that I visit fairly often. It may be MM related, but that's an assumption I wouldn't make until I've exhausted all other possibilities.Keep the faith, Sondra, and good luck, your posts have really helped to reassure me that I'm going down the right track....Rick

Vestibular Nerve Section Tricia 12:48 pm wednesday january 31, 2001
Sorry about the last entry. I have Meniere's Disease for about 3 years now! I have been through water pills, shots, steriods, changing my diet. I went through the Endolymphatic Sac Decompression and it help my dizzy spell for about 9 months. Now, I am getting them all the time. They are not too bad. Some just last a couple of seconds to several mins. I just talked to my Dr. and he suggested Vestibular Nerve Section to be my next step. He said he would go this way because I still have some good hearing left in my ear. What I want to know is what is the recovery like? Plus, he said that i might be able to have a hearing ade. I was thinking will that make my ringing louder? Please, help me I am scared and so is my famliy.
Sincerely,
Tricia

re: Vestibular Nerve Section Rick 5:03 pm wednesday january 31, 2001
All I would suggest, Tricia, is to make sure food allergies aren't causing your latest problems. I was exibiting the some of the same symptoms you are and it turned out to be wheat(flour, starch,etc..), gluten, oats, barley, and malt. It's easy to eliminate a food group and see if there is improvement in your symptoms. Some people's meniere's is triggered by eggs and milk. I also take chlortrimeton and benedryl. It would be a shame to go through a surgery if it was something this simple. I didn't believe it at first because I didn't have any of the classic symptoms of a food allergy such as rashes, swelling,etc.. But once I eliminated those foods completely I quit having the two hour vertgio attacks and also got rid of the brain fog. I also quit using nutra sweet. I don't know if it was a trigger, but I'm chicken to try it again. Good Luck...Rick

re: menieres in both ears now? Sondra 5:03 pm wednesday january 31, 200
Thanks. I have dr. appt. w/new ENT Friday, too. Maybe I'll like this one!!

re: Vestibular Nerve Section Sondra 5:09 pm wednesday january 31, 2001
I agree with Rick. I suspect that allergies are one of my culprits. I almost had a bad attack this morning and I had some (much loved but allergic to) milk yesterday. I was overtired, but think the milk had a play in it. Aspartame/NutraSweet had triggered me too. And gives me a migraine. I don't touch diet stuff of anything with caffeine in it. Miss the chocolate but it's not worth it!!
Good Luck

re: Vestibular Nerve Section Sondra 5:13 pm wednesday january 31, 2001
Have you ever thought of accupuncture. I have never tried it, but some people on another site say it works. Maybe you could try it?? I just hope you don't have to have surgery. Much mixed opinions about it and risks and outcomes. Maybe it would be successful?
I have found that caffeine makes my ears ring a lot and LOUD. Do you consume it. If so, try elimination!!
I do hope you feel better.

Vertigo Rick 3:00 pm thursday february 1, 2001
Monica,
I've had Meniere's for 17 years. The last two years were exactly as you described. I found out that it was Wheat/gluten products that was causing my problems. I also quit aspertame and that might have helped too. I'm too chicken to try it again and see if the symptoms return. I also started using sugar again and it seems to help also, so I don't know if it was the aspertame or absense of sugar. Anyway the main culprit was wheat, gluten, oats, barley, and malt. Alot of people who exhibit your symptoms are allergic to milk and eggs. You may not think it's food allergies because you are not having any of the classic symptoms of food allergies. Neither did I, just vertgio attacks. I am feeling back to normal these days and it's been about two months. Good Luck...Rick

re: Vertigo Rick 6:18 pm thursday february 1, 2001
Oh I forgot, yes I do have floaters... Rick

Headaches Matt 6:49 pm thursday february 1, 2001
Has anyone experience ongoing headaches from Menieres? I haven't had any serious spinning since last july but I have a fairly serious headache nearly every day. I was diagnosed with Menieres several months ago after battling for a year and a half. I've been reading a lot of the entries and no one seems to talk about headaches. VIOXX helps but is very expensive and not covered on my plan. HELP!

re: Vertigo Rick 0:06 am saturday february 3, 2001
I'm still waiting to see an allergist. The way I found out that I was allergic to wheat was an article i read that said wheat allergies were very common to MM sufferers as was eggs, milk, and corn. I then put two and two together and noticed that I had consumed a wheat product before a lot of my vertgio attacks. Later I found out that oats were also causing vertigo attacks. As I look back, at first it wasn't so abvious, but it was getting to where I was having a vertigo attack within 15 minutes after eating one of these foods. I eliminated everything that had "wheat" on the label. I got better but i was still having really bad brain fog and felt on the verge of a vertigo attack. I then read on a Rice Flour bag that it was for people on gluten free diets. I read up on gluten and found it was also a wheat product. So I started eliminating anything that had "wheat, flour, food starch, and gluten" on the label. The fog then went away and I haven't felt this good in years. A few weeks later I had a vertgio attack after eating a bowl of oatmeal for breakfast. It was the first time I had eaten oats since I had eliminated all the wheat products. I then read that if you were allergic to wheat, then you were likely to be allergic to oats, barley, and malt. So I then elimnated those from my diet and have not had anymore attacks. Since the vertgio attacks were actually being caused by histamine which is released by the body during an allergic reaction, I also take antihistamines before I each meal. They keep me from having an attack if I eat something I shouldn't but I will still get the brain fog back if I eat something I shouldn't even with the antihistamines. The article I read said the newer antihistamines don't work as good for this situation as the old chlortrimeton and benedryls do. Hope this answered your question. I still want to see an allergist to se exactly what I'm allergic to and what I'm not because I also quit drinking milk and anything with aspertame and I'm too chicken to try them again. goodluck..Rick

re: Headaches Rick 0:10 am saturday february 3, 2001
I don't get headaches but that's not to say you can't. Since I've proven to myself that allergies are causing a lot of vertigo attacks, then it makes sense to me that you could suffer from allergies also. And not only could they be causing your vertigo attacks but I know a lot of people that get Migrains from allergies. So I think there could definately be a connection..Rick

re: Headaches Linda 0:18 am saturday february 3, 2001
I have had migraines for many years. I an unsure whether they are related to menieres but have read that is is related. I take feverfew daily to help with this. I would recommend it to anyone it has been an enormous help to me. Feverfew is a natural product and I have been taking it for almost two years. I haven't experienced any side effects from it but make sure you research it for yourself before trying it. I hope you're headaches improve and this helps some.

re: Vertigo Martyann the 7:50 pm wednesday february 7, 2001
Monica your story sounds so familar only I was dx with a pinched nerve due to ostoarthris in the neck. My pain managment doctor told me (just before a second set of steroid injections to my cervical region) that the pinch nerve was in the wrong place to cause the symptoms I had been having, usually it was higher up. I had gone thru several doctors encluding ENTs, neuro and orthopedic surgeon with no answers. Meniere's had been ruled out more than once. I finally found an Allergy/ENT specialist who said it was Meniee's caused by allergies (cause excess fluid in my ears and sinuses).
I'm allergic to a number of things as you can read in my earlier post. Unlike Rick, I may not experience symptoms until 8-24 hours after I'm exposed or eat somehting I'm allergic to. If I have an immediate reaction it is usually a headache or a stuffy nose.
I don't know about aspartame as I never used it(I hate the taste). But I do know that it isn't good for you in any event. I do have floaters, have had for a very long time, but hyaven't gotten any clear answers about those. Know one seems to think they are of any importance (they don't live with them) I'm always swatting at bugs that aren't there!;) Check with Dr Gwen's web page to see if she has a doc in your area she can refer you to.

Floaters- Do you see Spots? Rick 9:37 am thursday february 8, 2001
It seems a lot of us have floaters. Here's a good explanation of what they are if your curious... Rick
http://www.vrmny.com/PVD.htm

No dizziness Carrie 1:25 pm friday february 9, 2001
Please excuse the first message. I'm new at "chatting". I've been diagnosed with MD for 20 years. Up until the last 5 I was fairly normal, just occasional fullness and tinnitus in my left ear. I never experienced dizziness. After several very stressful events in my life, let me repeat - very stressful - MD started progressing. More fullness, more tinnitus. My doctor of all the years kept giving me medications and sending me on my way. I felt like a medicine monkey at times. The worse was the prednisone, which I took high does of for 3 months. No help. I became so frustrated with this doctor that I finally won my insurance company's approval to be seen at Barnes Hospital in St. Louis, MO at the Deaf Institute. I'm still undergoing testing there, it's over a 200 mile trip for me, but I have more faith and hope in the doctors there. BACK to my point of writing this. Up until recently I have never experienced the terrible bouts of dizziness that I've read about. Are there others out there that do not have the dizziness? I feel very lucky after reading about the horrible experiences most people have with this disease. I can only imagine what it's like to have the fullness, hearing loss, tinnitus AND dizziness, vomiting all at once. My heart pours out to you. After reading about the food allergies I became more interested than ever. I had already cut the salt, caffiene, sugar, aspartame, monosodium glutimate, and alcohol out of my life. But the wheat, glutens, oats, etc. really made sense to me. For only 3 days I've added those to my no-no list and I haven't had the very slight dizziness that I was beginning to develop. Some of the fullness is better...at times. The tinnitus is still there. I would like to tell all the dizziness sufferers that my heart pours out to you. I would also like to suggest trying to stay away from the wheat, glutens, oats, etc. I'm curious if there are other MD sufferers that do not have the dizziness, vomiting, etc.- just have the fullness, hearing loss, tinnitus like myself. I would also like to know....DOES THE TINNITUS EVER GO AWAY!!!

re: No dizziness Rick 3:46 pm friday february 9, 2001
I've had MM for 17 yrs and it wasn't until the last two that I was getting dizzy until I got off the wheat. Now I'm back to the way I was before...Rick

surgery Beau B 11:11 pm monday february 12, 2001
I have just been diagnosed with Meneres and wondered what surgery (vestibular neurectomy)would cost and if all problems would be gone. Get back to regular food and diet? If anyone has had this procedure, please let me know.I have an appointment next week to discuss this with surgeon.I am 49 and have been in perfect health all of my life,this is really a change in my lifestyle.

menieres disease (recently diagnosed) shelle 1:12 am tuesday february 20, 2001
THE INTERNET HAS BEEN GREAT FOR FINDING OUT INFORMATION ON SUCH A DISEASE. I HAVE ALREADY BEEN FORTUNATE ENOUGH TO TALK TO A FEW PEOPLE BY E-MAIL. I HAVE NOT YET;HOWEVER, COME ACROSS A CHAT GROUP. I WOULD BE INTERESTED TO HEAR OF OTHER PEOPLES STORIES OF COPING WITH MENIERES. THANKS

TO ADD ALITTLE MORE INFO. SHELLE 1:34 am tuesday february 20, 2001
AFTER READING SOME OF THE CONVERSATIONS, I FELT AS IF I NEEDED TO ADD SOME INFORMATION. I WAS DIAGNOSED ONLY ABOUT 1-2 MONTHS AGO. I HAD BEEN HAVING AN OCCASIONAL 'FLUTTER' SOUND IN THE RIGHT EAR FOR MONTHS. THEN IT BECAME CONSTANT, AND TRAVELED TO THE LEFT EAR. BUT NOTHING CAME OF IT.
I WAS AT WORK ABOUT 2 MONTHS AGO, AND PASSED OUT. I SPENT 3 DAYS IN THE HOSPITAL, AND RELEASED WITH ONLY HAVING A VIRAL INFECTION.PRIOR TO ALL THIS, I STILL HAD THE EAR NOISES, AND DIZZINESS. (I OFTEN HAD DIZZY SPELLS ANYHOW) I HAD ALMOST PASSED OUT AGAIN A WEEK LATER, SO THE DR. DECIDED TO PERSUE THE EAR PROBLEM. OFCOURSE I SEEN AN ENT,AND THEY DID THE NECESSARY TESTS, AND SURE ENOUGH......MENIERES. MY ENT TOLD ME NOTHING ABOUT IT, JUST HANDED ME A PERSCRIPTION TO BE FILLED, AND SAID 'HAVE A NICE DAY'... I HAVE SINCE FOUND OUT A LOT OF INFORMATION ON THIS, AND HAVE COME TO FIND OUT THAT THERE ARE MANY MORE PEOPLE WITH IT THAN I THOUGHT, AND THAT IT COMES IN DIFFERNT STAGES, WITH SIMILIAR SYMPTOMS. I HAVE ONLY HAD 2 BAD ATTACKS, BUT EVERYTIME I GET A COMMON COLD, OR VIRUS, IT SEEMS TO ACT UP TERRIBLY. AND THAT DOESN'T MAKE THINGS EASY FOR ME. I AM ON FLUID PILLS. AND MY PRIMARY CARE PHYSICIAN AND I HAVE DECIDED TO FIND A NEW ENT. WE FOUND A CLINIC THAT SPECALIZES IN THIS FIELD, AND OFFERS SUPPORT.
PLEASE FEEL FREE TO RESPOND. I WOULD REALLY APPRECIATE ANY NEW INPUT. MY MAIN QUESTION THAT I CAN'T SEEM TO GET ANSWERED IS IF THIS PROGRESSES...... WILL IT GET WORSE? I KNOW EVERYONE IS DIFFERENT. I EVEN READ IN SOME OF THE STORIES THAT ALLERGIES TO FOOD WAS ALOT OF THE PROBLEM. THAT'S THE FIRST I HAVE HEARD OF THAT. THANKS FOR LISTENING........ I AM HAVING TROUBLE DEALING WITH THIS ONLY BECAUSE I EXPECT SOMETHING TO HAPPEN, (LIKE AN ATTACK) EVEN THOUGH IT MAY NOT........TAKE CARE.

Surgery or injections Wanda 12:30 pm sunday february 25, 2001
Hi,
I am very interested to here from anyone who has had the vestibular nerve section. or the gent injections. I have been fighting this stuff for a year now, I get very dizzy and natious. After going through many doctors I finally traveled out of state and found a doctor who ran more tests and found out that my left nerve is damaged. However I do not have hearing loss as of now. He suggest either injections or surgery. He says that sending an incorrect message to the brain is worse than sending no message. He says that with the injections I could have a 30% chance loss of hearing. And with the surgery I could have a chance of loosing facial muscles beings you hearing nerve and facial nerve are very close to your balance nerve. I am being torn apart trying to decide what the do. However, I can not go on feeling the way I have been. I have missed work. Couldn't go on our summer vacation becouse of sickness. I get anxiety with this also. As if the dizzyness

Meniere's Betty 9:17 am monday february 26, 2001
I have had Meniere's since l988, but had had no attacks for ten years. Now I have loud noises in both ears and am losing my hearing. What do you do for the loud noises???

I found a cure Yvette 10:50 am monday february 26, 2001
Hi!
I was diagnosed with meniere's October 2000. The vertigo was awful, lasting form 8 to 9 hours at a time. I started researching on the internet and came upon www.nutrition-help.com. I have been doing all she recommends for the cure of this disease for about a month now. It has been incredible, no more vertigo, the fullness is gone and the ringing is starting to fade away. It is definitely worth a look, it has changed my life. I hope this can help someone.

re: I found a cure Rick 12:25 pm monday february 26, 2001
That is a very good site. I know low blood sugar sends me into a vertigo attack and it was good to see someone else discovered this. Wheat/ gluten products also trigger my vertigo attacks. I've been 2 or 3 months vertigo free since eliminating wheat and going on the diet that is very close to the one at the web site you mentioned. Thanks for posting...Rick

re: menieres disease (recently diagnose HELEN 1:01 pm monday february 26, 2001
http://www.menieres.mainpage.net/
This page has a chat - we meet every Tuesday & Friday evenings to talk on the chat.
Hope this helps.

tmj --&-- meniere's Bridgette 1:20 pm monday february 26, 2001
Hi. I was diagnosed with Meniere's one year ago this month. I am looking for a new doctor in my area (NJ) who is a little more open minded than the one I've been seeing. I'm wondering if anyone at this site has ever heard of a connection between TMJ and Meniere's.( I've had TMJ for 20 years and wonder if it is causing problems in my ear) I've been on Zyrtec daily and Meclizine for vertigo episodes, but I think I'm building resistance to the Zyrtec. On Friday I had a short episode while driving for the first time and it scared the hell out of me, so I am looking for support and experience at this point. I am a singer and I'm scared to death that I will have an episode in the middle of someone's wedding! Any info is welcomed and so appreciated. Oh. One more question, do any of the women experience more symptoms around the menstrual cycle? This is all still new to me, so I am so grateful for websites like this.

re: tmj ----&---- meniere's Rick 4:28 pm monday february 26, 2001
Be aware that food allergies can cause vertigo attacks and also the daily dizzies. Wheat/gluten/oats will get me to spinning any time. E-mail me if you would like more info. I'm also a musician with the same concerns. There is also a sight that talks about the monthly thing-
http://www.drgwen.com/menieres/forum/default.asp?F=21
Hope this helps
Rick

re: Surgery or injections Tracey 11:05 pm monday february 26, 2001
I had this procedure in 95'and have chronic headaches and migraines as a result. I would ask the percent of cure rate when choosing procedures. When I looked into this I chose the most drastic because it had the best percentage of cure. One of my choice was only a 60% cure which meant having dizziness 40% as often which was not an option. I have meniere's to an extreme. Given what I know now I still would have had the surgery but would have researched much harder and made sure my doctor was up to date on the latest techniques. Go to or call a hospital's library and ask if they could send you articles on long term post procedure studies for which ever surgery you choose. The information you will get there will educate you better than any one particular doctor can. It is non-biased! I also found Herbert Silverstein who is the Doctor that developed the nerve section and actually wrote the college he was teaching out of in Illinois. Although he is retired I believe, I had a reply via e-mail from the most fantastic people there who said to write any time with questions. I also had a response within 24 hours. Better than a doctor's office. What I discovered is: get to know nerve sections and the different techniques that can be used. There are several ways for them to perform the surgery and depending on how they enter your head will give you better odds on not ending up like me. There are new techniques where the chance of headache afterward is minimal. That was not an option in 95' for me because they hadn't improved it that much by then but if I can save someone else from making the same mistake...I'm sure going to try. Good luck and let me know if you have any other questions. Tracey

re: surgery Tracey 11:07 pm monday february 26, 2001
Please see my reply to Surgery and injections above-hope it helps.

re: Vestibular Nerve Sectrion Tracey 11:07 pm monday february 26, 2001
Please see my reply to Surgery and injections above-hope it helps.

my story and help for someone! Sara 11:54 am tuesday february 27, 2001
Hi everyone,
I am new to this board, but I am hoping that my story will help someone who is suffering from dizzyness. Four months ago I started having dizzyness which was pretty much all day, 24 hours a day, and I had bad brain fog, and much pressure in my head and ears, and some ringing in my ears. The dizzyness would get worse and then slightly better, but it was always there. I went to two general doctors, an ear nose and throat doctor, and a neurologist, and no one could help me. The neurologist was just about ready to say I had Meneir's and have me take Diamox for the rest of my life, and have me go on my way suffering. I finally decided to try an acupuncturist, who after some poking and prodding and asking questions, thought that I had TMJ problems. He then had me apply heat to my sore jaw to relax it, and take a herb called Berberine to supposedly help drain fluid from my ears, and he did some minor pressure and manipulation to my jaw. In the process of all this, my eustation tubes suddenly drained! I had no idea they were even blocked. This did not show up on a CAT scan or an MRI of my head, and no doctor had ever approached it from this angle. This was five days ago, and and the brain fog is gone, the pressure and ringing in my ears is gone, and the dizzyness is much much better. I also have sinus and allergy problems which could be why my tubes were clogged. The important thing here is that I had no idea they were clogged, and neither did any doctor. This has changed my life--I have gone from despair pretty much back to my old self again. I would encourage anyone with these symptoms to make sure your eustation tubes are not clogged. If this was already covered on this board I apologize, I am just hoping to help someone. If you have questions about my experience feel free to e-mail me at sarapetsch@yahoo.com

Tracey, more questions Wanda 7:38 pm tuesday february 27, 2001
Thanks a million for responding to my question. How did you get ahold of this clinic that e-mailed you back? Is there a e-mail address?
How long after your surgery did it take you to start to feel normal again?
Do you still have the off balance feeling?
Do you feel this surgery has benifited you. Except for the migraines of course. I do get migrains but since the doc put me on nortriptalyne and covera I haven't had one in about 3 months. It is this dizzy stuff that stinks. When you were so dizzy did you also feel like you were loosing you mind? Gosh nows I have been.
Did your dizzyness come in spurts. Mine seen to come approx every 3 months and they last for approx 6 weeks of he__. I cannot function when they hit me it is the most awful experience in my life.
I appreciate any answers you can give me Tracey. Thanks a bunch for your info.
Wanda

dizzyness and loss of balance Betty 1:05 pm wednesday february 28, 2001
I found a supplement called Cholinoid that helped me to maintain my balance. It is inexpensive and I buy it at my local pharmacy.I had very severe Meniere's attacks for two years until my doctor prescribed Clolinoid. They do not help everyone but they have helped lots of people. I have five cousins with this disease and we all take this. I was attack free for ten years.

re: dizzyness and loss of balance Rick 4:35 pm wednesday february 28, 2001
I looked it up and saw that it was the same as Lypoflavnoid. The only place that sold Lipoflavnoid was way too high, but I've heard other people say that it helped alot. Thanks for sharing, Rick

Epley Maneuver Norma 7:32 am sunday march 4, 2001
Has anybody had this procedure done ??? I would like to hear from others who know about this. My ENT did it on me two months ago and my dizziness has greatly improved. But I still have the "other" stuff (problem with balance, ringing and fullness in my ears, brain fog, etc, etc,) Please email me.

re: Floaters- Do you see Spots? Deborah 3:16 pm sunday march 4, 2001
That's amazing! I have floaters also. I never thought about a correlation before but I think you might be on to something.

Dizziness Leona 2:03 pm tuesday march 6, 2001
Hi. I have been suffering with dizziness for almost a year now. It has been diagnosed as inner ear - vertigo imbalance caused by a virus. I always seem to get a panic attack when the dizziness starts which, I know, makes me worse. My attacks seem to happen when I am overtired, which happens often enough as I am working and help babysit my grandchildren.
The part that scares me the most is the pressure I feel on my head or in back of my neck. Does anyone else feel this pressure.
I also seem to have trouble being in a large room such as our cafeteria at work or a theatre, bingo hall, etc. The only medication I take is "Binomine" which is like a gravol. Is there any suggestions on what I can take to help deal with this dizziness.
Since my dizziness, I have also been given high blood pressure pills to take, but I'm sure the panic attacks is what makes my blood pressure go up.
My first attack was so bad (thought I was having a stroke and dying) that I'm terrified when the symptoms start. I just don't know how to deal with it. I will not stay alone at home which is so inconvenient as my husband works shirt work. My family is very patient but I am starting to feel like I am a burden.
If anyone has any suggestions on how to better deal with this, please let me know.

re: Dizziness Wanda 3:05 pm tuesday march 6, 2001
Hi there I can try and help with a few things that have helped me. What is Binimine?
So many of us with vestibular disorders are on antidepresents, it does help most of us deal with the anxiety that we have with this dreadful stuff. I to had to have someone with me after my first attack. I pretty much ruined my sons summer couse I was afraid to be alone.
My doc also gave me lorazapan for when anxiety hits me hard. I wouldn't take it at first but found out that it does help the anxiety.
I am able to be home alone now, But I always know that I can call someone if things are getting to bad. Are you getting any kind of medical treatment for this? good luck
Wanda