Greg's Discussion Group Archives
Page 3

April 12, 2000 to August 25, 2000 upDate

Hi, and welcome to my discussion group archives. My server (BeSeen.com) only keeps the messages for 60 days, so I will publish them here.
I have kept the original email links so some of them may be outdated. If you would like your email address updated so people can contact you, please email me at GF899@hotmail.com. I will change it on my next upDate. :)
11-14-00 upDate

autoimune inner ear disease Maggie 0:55 am wednesday april 12, 2000
I have a long history of ear problems and now have a lot of other things too. Another post at a Fibromyalgia Forum mentioned this AIED and Menieres I could sure use some input. Where do I go from here?
I've had Mastoiditis and the surgery 38 years ago. Now maybe FMS, Depression etc. I had 6 rounds of anri-biotic in 8 months for "ear infection"
ENT specialist cleared me after 30 seconds and tested my hearing.......Still have pressure and pain (mastoid ear) As well as motionsickness and headache.
I was told the motionsickness was withdrawl from Anti Dep.s
I don't know any more..........Thanks ...Maggie

What to look for,,,, Maggie 12:21 pm wednesday april 12, 2000
I will be seing the ENT specialist tomorrow am. How will I know if he is checking for something unusual?
The last visit was about 30 seconds and he said everything is fine!
I still have pain behind left ear in eustachian tube area and pressure in my head. There is some dizziness and the pain is worse when I suck on a straw.......Last week my throat felt thick and scary to swallow. How do I know if this guy is any good? Not all Drs finish in first place and he is only been in this city for a few months. Re cap..........Mastoiditis, mumps and measles together and a blow to the left side of the head at 5 years old......ruptured ear drum. Mostly deaf left side.....Lately treated for Fibromyalgia with ADs and therapy.........May be TMJ, etcetera etcetera etcetera.......Maggie

Susan and others Beth 2:08 pm wednesday april 12, 2000
Hey Susan what is up? I got your message a few days ago and I think my e-mail is working. I got your card. Thank you! Your surgery is coming up and I would like to help any way I can. Let me know your questions. I have only discovered two thinks I can't do now. One is run, two is ride a bike. I found out the running one today. During my homeroom class I took my kids to the gym. We were playing basketball and I tryed to run and it didn't work. I fell. Looked stupid but I learned that I can't do that now. I have never regretted the surgery-- I don't have any more vertigo. Keep in touch.

re: What to look for,,,, To Maggie 2:18 pm wednesday april 12, 2000
Maggie
Have them test you for meneries disease. They should do several test including a hearing test, kalorics (sp) test , rotating chair test. I have had mineries for several years. Your headaches could be cause by the anti-depresses drugs. I have been taking prozac for a year and it works fine. My dosage is very low. Let me know more.

re: What to look for,,,, Maggie 3:00 pm wednesday april 12, 2000
Hi ...Thanks for the suggestions........The headaches originally are why I was put on ADs....I had migraine intensity ache for 8 weeks. I kept asking my Doc to look for a virus.....YOU'RE Fine..... Ive been treated for 5 or six so called ear infections over the last 8 months.
I just want to be prepared tomorrow........I looked up Cholesteatoma and thought that sounded more like it.......Any comment?

post vestibular neurectomy headaches Tracey 9:24 pm wednesday april 12, 2000
I had a nerve section 5 years ago and am plagued by headaches. Was wondering if there is anyone experiencing the same thing and whether they have found anything that works to combat them. ie: type of therapy or a particular drug???? My physician is at a loss??

Chat Dejavu1 10:07 pm friday april 14, 2000
What's up Greg ?? I've tried to get into your chat room a few times now and have never succeeded...I can get in there but I just keep getting the same message over and over again that loads at the bottom of the page...But it does show the last time a message was posted...was just wondering...Thanks

thanks melodiethanks 1:58 pm thursday april 20, 2000
It's been awhile since I've been back to check new messages. I haven't felt well enough to sit in front of my computer for any length of time to check what's new.
Does anyone eles have this same problem by sitting in front of a computer? I get vertigo from things moving on the screen. Is this a normal reaction? Sometimes I think that the change in weather can be a big factor in causing vertigo too. There have been several days of damp, rainy weather with fluctuating temperatures here that have caused even more attacks. This is typical each year around this time. Anyone eles out there suffer from weather changes too?

Menieres Flight Marcia 6:56 pm saturday april 29, 2000
Hi ,I just found you guys. I wanted to let anyone interested in knowing that there is being planned a Menieres Flight to raise money for research into Menieres Disease and other vestibular diseases. The site is in Yahoo.
http://clubs.yahoo.com/clubs/menieresflight
Anyone interested in getting involved in any way would be welcomed with open arms. We've got to put an end to this madness.
There is a meeting being planned between the founder of this huge undertaking ,Gary Bowers, and ABC. We may be finally getting coverage of somekind.
Thanks for your time and keep balanced
Marcia

Getting a Hearing Aid Greg2 7:47 pm monday may 1, 2000
It's almost time for my yearly hearing test, and I have made up my mind that I want and need a hearing aid. I understand about 10% in my left ear.Doesanyone have any advice about what to look for and what questions to ask? I have heard of hearing aids that have a microphone on the deaf side, but send the sound to the good ear. My doctor has been telling me that boosting the sound in my deaf ear will not work because of the nerve damage. Also, does anyone have any good references in the Toronto or London area as to doctors and hearing aid specialists?

re: Getting a Hearing Aid ann 5:22 pm tuesday may 2, 2000
hi, greg!! so glad you are going for hearing adi. it does change the world..
my ENT fortunately has common sense.. the audiologist wnated hearing aid in "good" ear not the "bad" one. the ENT said she need in left because that's the side they speak to her on not on her right side (position of my office).. so,, yes one in the bad ear does help.. i will be getting one for my "good" ear also..
no doubt, the change is only for the better.
good luck!!

re: Sometimes coping .. Darrell 8:28 am wednesday may 3, 2000
Ann,
Great to hear someone with some perserverance and determination to fight MD. The positives are the reasons I read these postings and you made my day with your attitude.
Keep it up because I am 28 years old and will continue to have the same kick ... attitude to keep my self sane.
Good luck and remember, no one can help us more than ourselves. If we can't believe in ourselves than why should anyone else ?
Cheers and thank-you,
Darrell

Meniere's and great news deanna 2:09 am monday may 15, 2000
Great news. For all the wonderful people that have been so willing to tell their stores of dealing with this disease in every sight I can find. I would like to thank all of you. I would also like to tell you about my wonderful daughter. She came down with bilateral Meniere's disease at age 16. This has been a horrible fight. With a disease that I had no idea about we traveled into the unknown alone. But, with the help of the people that have this disease that were willing to tell their stories we were able to at least feel not so frightened. My great news is that after six years in collage. Having to drop out four times my hero, my daughter will graduate at the top of her class with three degrees. There have been many times that she could have very well given up. With no medicine that seams to help and many attacks that have lasted weeks at a time, some months. I don't know where she finds the courage. I just wanted all the new Meniere's suffers to know that life does not stop with Meniere's. It can sure put a damper on it but, just maby time will change all of this, with at least a treatment that will help those untreatable. In the meantime I will fight for all the wonderful people that have given our family such support. I am sure that there are many that would not be so sure about going into the unknown with dreams intact. Believe me it has not been easy but, who can say what tomorrow will bring. I am sorry about my writing. The words do not come easy but, the heart tells it all.

glycerin test Kathy 9:36 am tuesday may 16, 2000
My daugher is having this test this week. Any info on the test and side effects would be helpful. Her hearing this week is actually better, but still the dizzy spells...valium helps.

re: Meniere's and great news Beth 3:15 pm friday may 19, 2000
Dear Kathy:
Sounds like your daughter and I have been down the same road. I have suffered from Mineries disease for many years. I'm doing great now. I had my vestibular nerve cut about 3 months ago. I feel better than I have felt in 10 years. I also met a neat person at this web site. Susan and I e-mail each other regularly.v I'd like to hear more about the different treatments you went through. Please e-mail me at denver826@yahoo.com.

re: Menieres Flight Maricela 6:43 pm thursday may 25, 2000
hi marcia
I would love to hear more of this since I wish that there would be more coverage in the media about this horrible illness and the affect it has on childdren spouse, and job.

spinning while driving Maricela 6:38 pm thursday may 25, 2000
I have had menieres for about 5 years, It has been hard to handle but I have learned how to cope with the illness. I had been episode free for about two years and this novermber 1999 they came back.. that I ended up in the hospital for 2 days due to the amount of vomiting i was doing beacuse of the vertigo. The thing that terrified me was that this vertigo would attack me when I was driving and everytime I would feel an episode I would pull over and let it pass or call someone to pick me up but this past tuesday it happened I was going to lunch with some coworkers and I was driving and WHAM!!!!!!!!!! the vertigo started with no prior notice like before. I let go of the wheel and thank GOD for my freind she took over the wheel.....I have since stopped driving, I would like to hear from fellow menieres patients please e mail me I would love to hear of your experences and how you have handled the situations

re: thanks Maricela 6:47 pm thursday may 25, 2000
hi, melodie,, I understand how you feel, I sometimes get vertigo at work when the computer is going by too quickly so needles to say I try to keep a slower pace. I also get vertigo watching tv and going to the theater. Have you ever experienced vertigo while driving? I have it is HORRIBLE!!!!!!! PLEASE let me know how you are coping

re: spinning while driving Beverly 9:28 am tuesday may 30, 2000
I have had MD (that has been diagnosed) for only about 2 months now, but during that time, I have been totally incapacitated. I have not been able to work, drive the car or function. I have been to several specialists, including, ENT, neurologists and then finally to an ear surgeon.
Last tuesday, May 23, I had the shunt placed in the right middle ear. It was a pretty benign surgery. I felt great the next day. Then on the 2nd day, I was nauseated, vomited and dizzy all day. I used my Antivert and got through the day. Then for 2 days after that I felt wonderful. Then here we go again. For the next 2 days, nauseated, vomiting, and dizzy.
The surgeon told me that it may take up to 4 months before it really starts to work to keep the fluid down in the middle ear. I can only hope that is the case.
I guess I was at my wits end. I can not function this way and I know that in the next four months, if this does not work, I will definately have the vestibular nerve resection done. I can not live this way. How you have done this for the past 5 years, I do not know. I have been 2 months of sometimes 2 attacks per day lasting 5 hours or more each. One just ends when the next one starts.
Have you heard about the surgery?
Let me know. Thanks, Beverly.

re: glycerin test Beverly 9:37 am tuesday may 30, 2000
I have not heard about the Glycerin test. What is it about? I have just been diagnosed with MD after 2 of the most horrible months of my life. I have had continual attacks with nausea, vomiting and dizziness that are relentless.
I have been to ENt, who wanted to inject Gentamycin in my ear, to Neurologist, who right away suggested I see a surgeon who specializes in this disease. He told me about the shunt. He has placed 50 shunts in the last year and only had to go back and do 3 vestibular nerve resections, due to the shunt now working. I am really looking forward to the shunt working. I had the shunt surgery done one week ago and so far, I have been really sick. He told me it might take up to 4 months to work.
Let me know how the test turns out and what the results will tell you. Beverly.

menieres disease with migraines and seiz kathy 9:46 am tuesday may 30, 2000
My name is Kathy. I will be 38 at the end of this month. I am married to a great man with three children ages 13, 9 and 7. Thirteen years ago, three days after the birth of my oldest child I had two grand mal seizures and since that time I have suffered severe headaches and mild seizure activity. In the last five years the headaches have turned to severe migraines for which I usually have to go to the emergency room for demerol shots. (Thirteen times in 1999.) I was diagnosed with Meneires disease about two and a half years ago. I knew something was wrong with my ears but the other effects I was relating to stress. I never imagined I had a disease in my ear. I had to quit work about three months after I was diagnosed because I could no longer function properly. I was either dizzy or throwing up. I was entirely stressed out. My bosses were very understanding. I was a collection paralegal. I really loved my job. Because of my severe headaches I am limited to the time I spend on my computer to about 1/2 hour a day. I am afraid to push it any further, I don't like to bring on my headaches if possible. I have applied for Social Security, but they have told me that my Menieres disease in not debilitating enough. What is debilitating enough? I hired an attorney and I am waiting for the hearing in front of the judge. I need him to look at the entire picture of my life. I have worked since I was 16 years old. I have never been fired. I worked very hard. I would work if I thought I would be of some use to someone, but I don't believe in not giving it all you have and all I have right now is not much.
I am trying to find out if there is anyone else in a similar situation as mine and what advice they may have.
Thank you for your time.

What to do? Dawn 10:19 am thursday june 1, 2000
Hi, I think I'm about to be diagnosed with Minieres. My brother has it and was sent to Shea clinic in Memphis and was treated with the injection and the shunt. I'm scheduled to have a ECOG next week. They talked about referring me to the Shea Clinic also. I started with a hearing loss in my left ear and a constant ringing. I have occasional bouts of dizziness, mainly when I get up too quickly or at night. I have decreased my salt and was put on a diuretic (diazide) then taken off as it made me feel worse. My main concern is not to wait too long for treatment so that I might have a chance to regain my hearing. My brother has permanent hearing loss as his Columbia doctors took a long time in diagnosing him. He went for several years with his hearing loss. His dizziness finally got to a point where he had to seek help. I probably could function on the dizziness I'm experiencing now but I'd like to try and get my hearing back in my left ear. Any suggestions?

re: What to do? Beverly 3:35 pm thursday june 1, 2000
Dawn, I tried the salt free diet and then the diuretic also with no help.
I have not worked since April 2, 2000, I am a nurse practitioner, and this is very hard to me. I have never not worked in my life and it is very hard for me to have to rely on others for assistance. However, it is a good thing for me.
I was told the shunt worked pretty well after about 4 months. I just had mine on May 23 and have contant dizziness, vomiting and diarrhea, since then, except for 3 days, when I felt wonderful. I know I can not wait for 4 months to see if this will work. I will talk to my surgeon about severing the vestibular nerve. That suppossedly is the only real solution.
As far as your hearing loss, I have extreme hearing loss in my right ear. It feeels like there is cotton in there plugging it up. However, i would be willing to wear a hearing aid if needed. I just can not handle the other issues.
Good luck to you. One word of wisdom, at least from my MD, is that the injections into the ear really destroy the hearing in your ear with no chance of it ever coming back.
Let me know how you make out, ok, I am really interested and have found much comfort in knowing other people have this dreadful disease.

re: What to do? Dawn 6:01 pm friday june 2, 2000
Wow Beverly, I can't imagine living like that. So far my dizziness has been very mild according to all the people I've read about and My brother's case. I had not heard about the injections causing permanent hearing loss and will definitly be cautious about that. I haven't been fully diagnosed with it and am scheduled to have an ecog done on the 15th. My brother has been doing much better since the shunt was put in though it did take him awhile to start feeling better. He is now watching what he eats better now. I sometimes wonder if I might not have Menieres as my symptoms are minor (except my hearing loss). But I have only just started having problems in the last couple of months. I don't know how fast it progresses of if the things I'm doing are keeping it mild. I was under a lot of stress when I first started noticing the hearing loss. I've read that it could aggravate the situation. Thanks for writing me back and good luck with your surgery. I hope you get some relief real soon. Sincerely, Dawn

inner ear and ms michelle 10:23 pm friday june 2, 2000
I just flunked an ENG and was told I have an inner ear problem. I cannot function. I wake up dizzy, nauseous and burning all over. It becomes a panic attack it is so bad. Even after the attacks, I always,,,(24 hours a day), feel like I am rocking back and forth. My doctor told me I may have multiple sclerosis. I go for an MRI in two weeks. Is there a connection to inner ear and MS? Why would he say that?
How do I cope with the inner ear symptoms,,,dizzy, nausea, pain in ears, burning ears, occasional ringing, and the constant rocking??? Meclizine takes edge off,,but that's about it! I can't focus well to read or write. No one understands me. I have two very young kids I can barely take care of. Thanks for any help.

Unsure what's up Sean 4:51 pm monday june 5, 2000
I appreciate this web site like no other. 1 month ago I developed constant light headedness. Some tinnitus, pressure headaches, very tired. These symptoms and a trip to the ER produced severe anxiety and panic symptoms. Reading the other entries sounds like I came to the right place. I am taking my first trip to the Neurologist tomorrow. MRI has shown benign cyst in Basal ganglia. Any help, words of encouragement suggestions are greatly appreciated.....Meclizine wipes me out any other alternative.
Thank you

re: inner ear and ms Beverly 10:03 am tuesday june 6, 2000
Boy, I can really relate to what you are going through. I started with a severe fullness in my right ear about 2 years ago. When I went to my MD, he looked into the ear and said everything is ok. That was the end of it. Then this year, around March, I started getting very dizzy and unable to walk. Iwould vomit and have severe diarrhea. My head would just be spining so fast. After 3 MDs, I finally was told by neurologist that I have Meniere's Disease. April 2 was my last day of work, because I have at least one attack, sometimes 2 attacks per day. I have tried the diuretic and low salt diet with no relief. I now take the diuretic every other day and watch the salt intake, but not close. My attacks don't have any pattern that I can see. I do know that MS is closely related to Meniere's and I am not sure why. Probably the symptoms, but find a neurologist and she/he should help the most. I had the shunt put in on May 23 and so far have not had any difference. I still have about 5 attacks per week. I am so sick of these things, my life is not good. I can not function. I don't know how you do it with 2 small kids. I cannot take care of myself. You really need some help.
My surgeon told me that may be up to 4 months before I feel better. I don't know how I will ever be able to last that long. When the attacks hit, I am wasted for the rest of the day and into the night, depends on the time of the attack. The antivert makes me very groggy and sleepy, so I can't function even when the attack is over for several hours.
Please keep me posted what happens to you.If you just want to chat, you have my email address. Bye for now.

re: Unsure what's up Beverly 10:09 am tuesday june 6, 2000
Sean, there are a lot of treatments out there for Meniere's Disease. But, I have found if you see 3 different MDs, you will have 3 different opinions about what to do. Be careful. The neurologist should be ok, but find an MD thatyou like and trust and stick with him.
Meclizine does wipe me out too. I have not been able to work since April 2. It is pretty devastating for me. I had the shunt place on May 23 and so far, have not felt any better. I have about 5 to 6 attacks per week. How often are your attacks.
On good days, life is wonderful, however, there seems to be more bad days than good, at this point. (I have only been diagnosed since the end of April.)
I am a nurse practitioner and when I am unable to work, it really makes me upset and angry. I have never not worked and to have to depend on someone else is terrible. I know that perhaps this is a lesson I need to learn.
Let me know how you make out. I would like to hear about your progress. Thanks.

Allergy season Greg2 4:05 pm tuesday june 6, 2000
Well, alergy season is here again, and for a new twist I have fullness and loss of hearing in both ears this year. I have very little hearing in my left ear now, and my good ear is down about 30%. This is not a good sign. I wonder if this is the beginning of the end as far as hearing goes. At least I don't suffer a lot from vertigo and nausea!
My family is not very supportive of the hearing loss thing(why should they be angry?) but at least I don't have to listen to them. (HAHAHA)
Just whining a bit Thanks for listening
Greg2

re: Allergy season Ann 8:55 am wednesday june 7, 2000
Hi greg,, those that get angry cos WE cannot hear well has been a mystery to me, too.
At work, it was real apparent that inspite of knowing that i have a hearing problem, folks would & will speak to me with their backs to me so that i could not read lips, speak while walking away, expect me to hear a confidential whisper, etc. etc.
Don't know how many times they have to be told or requested to help out with the communication either... it's like THEIR EGO problem or something. Somedays, I just give up. It's been a year of this and not one friggin thing has changed,, even with a hearing aid...
I guess having had a hearing impaired & blind grandfather I never had the prejudice towards the issues nor take not being heard personally... My joy in life was walking my Grandfather to the store and stopping back by a goat pasture and telling him about them.. oh well..
One shock I also had recently was hearing a neighbor express disgust that her husband still couldn't hear her with his hearing aid.. dang airplanes fly over constantly,, doesn't anyone comprehend the effect of background noises??? like, a/c vents, fans, airplanes, traffic, wind... NOISE POLLUTION impacting the hearing impaired??? those switches work on background to some degree, but they will not compare to being able to hear without mechanical devices.

re: Susan and others Robbie 5:21 pm wednesday june 7, 2000
Beth, I am scheduled for a vestibular nerve section June 26,2000. I have suffered with Menieres Disease for the past 5 years. I also have a Mitral valve prolapse which has complicated many of my treatments for Menieres. I have had Profusions, low salt diets, no caffine, and have taken different medicines all which have failed.I would like to know more about your surgery. Thank you!

Vestibular Nerve Section? Robbie 12:26 pm thursday june 8, 2000
I have just found this web site. I placed a message yesterday but I think I might have put it in the wrong place.I saw that Beth had a nerve section done. I am scheduled for a vestibular nerve section June 26th,2000. I have suffered with Menieres Disease for the past 5 years. I also have a mitral valve prolapse which has complicataed many of my treatments for Menieres. I Have had several medical treatments discussed on this site all which have failed. My doctor seems to think it is now time for the vestibular nerve section. I would like more information about this surgery. Thank you.

re: Vestibular Nerve Section? Beverly 4:29 pm thursday june 8, 2000
Robie, I read that you are scheduled for the vestibular nerve resection on June 26th. Where areyou having it done? What hospital? Did you try the shunt? Have you tried diuretics and antivert? How often do you have attacks?
A lot of questions, I know.
I have had Meniere's Disease, about 2 months that has been diagnosed, however, Ihave had the fullness in the right ear for about 2 years.
I had to take a medical leave from my work on April 2 and have not gone back to work yet. I had the shunt operation on May 23 and have not seen any difference. I tried the diuretics and the antivert, no good either. The nerve resection is next for me too. I just know that ireally need to get a life back. I need and want to get back to work soon too. I am a nurse practitioner and work in rheumatology. I love my work and miss it terribly, however, with the mind fog, or whatever you may call it. I really don't think very well and don't know when I will be able toreturn to work anyway, unless that clears up too.
Please write back and let me know more about you. I am really interested in this condition. Everyone thinks that because you look good, you must be ok, Not so.
Bye for now. Beverly.

re: Vestibular Nerve Section? Robbie 10:53 am friday june 9, 2000
Beverly, I have tried head vibrations to break up the crystals in the ear in 1995. I have taken vasodilators and histimine I.V.'s in 1996. I have been on salt restirction diets and diureticts these interfere with my mitro valve prolapse and cannot be taken. I have had a dexamethasonne perfusion in 1997 which worked about 2 years. The procedure was done agian in Feb. of 1999 and failed. I am now going to see Dr. Gary Jackson in Nashville at Baptist Hospital where i am going to have the surgery.He is a specialist in Otology and Neurotology. My mother has Menieres also she had a shunt done in the early 80's which has not worked very well so I decided not to do this procedure since hers did not work very well.Now I am in bed most of the time I may be up and around a day or two but then i am back in bed again. I have also taken Anivert and Valium. Personally I like the Antivert lots better.I am a dental Hygenist and have not been able to work regularly since Jan. If you have any information about a Vestibular Nerve Section or any one else does please let me know. Thanks

Menieres Carol 6:19 pm monday june 12, 2000
I awakened one morning in 1989 with an inner ear infection that never went away. For 1 whole year, I had dizziness and vomiting and basically couldn't do anything. My son was 3 years old at the time. After visiting numerous doctors, ents.,and allergists, I finally agreed to have the vestibular nerve resection done. I felt as tho I had no other choice. I had a young child and it was all I could do to take care of him, much less myself. My husband was supportive, but he had to work. I had the surgery in 1990, almost exactly 1 year to the date of my first attack. At 6 months things were better, but not what the doctor had promised. I then went through a series of other treatments. Allergy shots and Prozac for depression. At this point I must say that I was having what the doctor said was shunt failures every 7 to 10 days before my surgery. So I did receive relief from those. But I still had problems with dizziness and weakness. I spent the next several years just getting by any way I could. Then 3 years ago I hurt my back and someone talked me into seeing a chiropractor. He gave me relief from my back problems and after 1 month I started noticing an improvement in my Menieres symptoms. I continued to see him for 2 more years. I was able to drive again and life was looking better. Then I had a disk herniate. Now the surgeon, again. This time I said I'll wait and see. My daughter had moved back home to go to graduate school and she took care of me and the house and her little brother, who was 13 by now. Now to my main point. I was going to a massage therapist one day. When I got there, I was too dizzy to lie on the table. The woman told me she also had Menieres. I said yea right. She was peppy and full of energy. She told me she had been to Shea and had 4 surgeries and none of them worked. She had been going to an Atlas Chiropractor and was having wonderful relief. I decided that this was something non- invasive and what did I have to loose. I have been seeing him for just over a year now. I cannot say enough good things about this type of Chiropractic treatment. They don't use a lot of physical manipulation. They align your atlas only. I am drug free and only have problems when I am out of alignment. I also have a problem retaining fluid. I was on a diuretic for 11 years,but it made my heart flutter, so I wanted to get off it. My Atlas chiropractor has been giving me enough relief that I have been off the diuretic for 7 months. He spend a lot of time with me and works really hard to help me. A regular can help, but you really need an Atlas Chiropractor to give you the best relief. I apologize for being so long winded. I just found this site and am amazed at the number of people with this problem. It is nice to know there are other people out there like me. I wish I had known more 11 years ago.

re: Vestibular Nerve Section? Beverly 2:35 pm thursday june 15, 2000
Robie, I just went for a check up with my surgeon and was told that the shunt has failed. I just had the surgery on May 23 of this year. I have to see him again in 6 weeks and then he will schedule the nerve resection. I am having attacks about 5 -6 times per week. This is not fun at all. I would love to hear howyou make out with your surgery. Where are you located and what hospital areyou having the surgery. How long will you be in the hospital? I know a lot of questions, however, just interested. I am sure we will talk more before the surgery. Keep your chin up. Beverly.

Still spinning Sean 4:04 pm friday june 16, 2000
Well I went tothe neurologist. He said it looks like spasms in the neck. I have been taking Vioxx for 1 1/2 weeks and the dizziness is still there. I think my next move would be to an ENT. I am just looking fo an answer. Is this really Meniere's...
Symptoms.....Lighheadedness, pressure headaches in the back of the head, lack of concentration, some ear pressure, no hearing loss, minimal ringing in ears, anxiety fear depression..Any insight and support is truly welcomed

Newly Diagnosed Lon 2:45 pm wednesday june 21, 2000
Just a couple hours ago my ENT confirmed, as best he could, that I have Menieres syndrome. We discussed treatment and at this point I'm going to try lipoflavanoids on a regular basis and ginger during an attack. Has anyone had any luck with these supplements? I was shocked when my doctor told me to go to a health food store. I'ld like to add that I'm sorry that all of you (us) have this problem but who knows, if we keep our ear to the wind (no jokes intended) we might be able to share something that really helps.

vertigoheelCarol 11:13 pm wednesday june 21, 2000
I just purchased a bottle of Vertigoheel. Since I have already had a nerve resection 101/2 years ago, how do I take this medication? I go to an atlas chiropractor who gives me relief. But even he says he can't undo the damage from the surgery. He suggest that I try the Vertigoheel but I am unsure how much to take and how often. You know how paranoid we get, just thinking that we might do or take something to make things worse. About 5 years after the surgery things started deteriorating. I don't have severe attacks, but I still get nausea, dizziness, anxiety and fluid buildup. The chiropractor can get rid of the nausea,dizziness and anxiety immediately but not the fluid buildup,that takes longer and seems to be my biggest problem. I can't take diurectics anymore. Will Vertigoheel help? I would appreciate any advice anyone has. Carol

re: Vestibular Nerve Section?Carol 11:37 pm wednesday june 21, 2000
Robbie.I had my nerve resection at Vanderbilt University in Nashville TN. My doctors name is Micheal Schwaber. He now has moved to Centennial Park. The operation lasted 8 hours.When I came out I was strapped to a table upside down. This is to relieve the pressure from the brain. My husband told me all this.I don't remember anything for at least 3 days after that. When I did awaken, my eyes jumped around so badly I could not open them. Trauma to the brain. I was sent home after 5 days. They removed the staples 2 or 3 weeks later, I don't remember exactly. I started having anxiety attacks at about 6 weeks. It took months before anyone told me what they were, including my surgeon. The surgery did stop the severe attacks. I haven't had to use anything stronger than Valium since then. The surgery only lasts about 5 years. I use an Atlas Chiropractor now for relief,since it has been over 10 years since the surgery and things have been getting increasingly worse.If you want to know anything else just ask. Carol

re: Newly Diagnosed Beverly 11:09 am thursday june 22, 2000
Lon, Welcome to the world of dizziness, vomiting, unbalance, etc. Can you tell me how your ENT made the diagnosis of Meniere's Disease ? I did go to ENT, however, he was not well versed in Meniere's Disease and so I went to Neurologistand then had the complete workup witht he hot and cold water, etc. I am a nurse practitioner, who was diagnosed in April. I have had attacks every day since April 2, and finally had the mastoid shunt operation on May 23. I continued to have attacks until 8 days ago and now for some reason, and I am loving it, the attacks have left. I have been out of work since April 2 and will try to go back to work on Monday, June 26.
Would love to hear about the supplements and if they work. I would be interestd in knowing more about them. Please drop me aline and let me know how you are doing. Thanks. Beverly

re: vertigoheelBeverly 11:12 am thursday june 22, 2000
Carol, I don't know anything about Vertigoheel,however, just wanted to let you know that today is day 9 without an attack. I am planning to return to work on Monday. This is wonderful. I am not 100%, however, no attacks. I hopethe supplement works foryou. There must be some treatment out there, that we are just missing or have not been offered. Talk to you soon. Beverly.

(no subject) Dawn 3:15 pm thursday june 22, 2000
My brother has Menieres and my ENT now suspects that I also have it. They have done alot of test, I have a loss of hearing in my left ear, ringing and dizzy spells. They have now referred me to the Shea clinic in Memphis. I'm not going until July as I'm going on vacation and don't want to change that. My dizzy spells at this point are managable. I have antivert and am on a low-salt diet. The thing I am concerned with is regaining my hearing in my left ear. Does any one know how good of chance there is to get what you lost back?

re: Vestibular Nerve Section? Beth 9:16 pm thursday june 22, 2000
Dear Robbie:
Susan told me about you. I had a vestibular nerve section done in Feb. I feel the best I have felt in years. After the surgery there is alot of compensation you must do. I am very willing to help. I talked Susan through it and would love to chat and answer your questions. Please e mail me at denver826@yahoo.com God Bless,
Beth

re: (no subject) Beth 9:20 pm thursday june 22, 2000
I have had Menieres for several years. I have had 3 different surgeries and several different treatments. The hearing loss is usually perment BUT if your ears are still ringing it is hard to tell if the loss has really occured. Email me and I will be more than willing to answer any questions you have. God bless,
Beth

re: vertigoheel Beth 9:23 pm thursday june 22, 2000
Please let me know more about this medication. What is it and how does it work. I had a nerve section in Feb. p>

re: Vestibular Nerve Section?Beth 9:34 pm thursday june 22, 2000
Dear Beverly,
My name is Beth. I just wanted to let you know that I had vestibular nerve section in Feb. I live in southern Texas. I have had Menieres disease for several years. I had two shunt operations, did geminicim treatment in both ears, did stepomincym treatment and finally a vestibular nerve section. I suffered for many years. I have not had one bit of vertigo at all since surgery. The compensation after surgery takes a while but with a lot of will power it worksl. I would love to help you out. E mail me with your questions and concerns. My e mail address is denver826@yahoo.com
God bless,
Beth

re: Vestibular Nerve Section? Beth 9:38 pm thursday june 22, 2000
Dear Robbie,
I just read your entry. I replyed to a previous entry too. Susan and I met through this web site and have become close friends. We have both had a vestibular nerve section. i am very willing to help. Email me your questions. My email address is denver826@yahoo.com
God bless,
Beth

re: inner ear and ms Beth 9:45 pm thursday june 22, 2000
There are several things you can do to help. One is to avoid salt. And to take a diaretic. Avoid caffine and smoking.Valium is sometimes used and works ten times better than meclizine. Have you been tested for Mineres. Email me back and I will answer and questions you have. I have had minerie for several years and have had several surgeries and treatment.

newly diagnosed Karis 9:58 pm tuesday june 27, 2000
No message was posted, possible technical problems.

(no subject) Dawn9:43 pm wednesday june 28, 2000
Has anyone had any problems with dieretics causing heart palpatations? I had to get off of mine because they were doing wierd things to me.

Meniere's????? Kay 6:17 pm monday july 3, 2000
After reading alot of the letters posted on this site I'm wondering if I have minieres of not. I went to a speicalist is Maine and he treated me for 6mo for my hearing loss, told me I had Miniere's then pasted me on to a speicalist in Boston Mass To see if he could help. Well he said he couldn't help with my hearing loss and I had Meniere's. I'm on a low salt diet and taking a water pill.BUT I don't sound like you people I'm not dizzy or of balance at all I have loss hearing in one ear. Whats up with that? If i had Meniere's Why aren't I dizzy too?

re: Meniere's????? Beverly 10:59 am thursday july 6, 2000
Hi Kay, There are some specific tests to definately diagnose Meniere's Disease. Hearing loss is just one of the symptoms. This could be an early sign of the disease. I had a "fullness" in my right ear for about 2 years with no other symptoms. My regular doctor looked into my ear and said everything is ok, not to worry. Then just this year I started with light dizziness, lasting about 20 - 30 seconds, then it rapidly got worse. I started having dizziness, vomiting, nausea, unsteadiness, etc. I have not worked since April 2. I had the endolymphatic shunt surgery on May 23rd. Right after the surgery, I still had attacks every day, but now finally, they are abouat a week apart. I am going to try to go back to work. Let me know what tests you have had done. Did you have the tests withthe hot and cold water in your ears? I would be interested in learning more. Good luck, Beverly.

Meniere's/SERC - views!!! Grace 2:54 pm friday july 7, 2000
Recently diagnosed Meniere's, prescribed SERC. How can I find details and information about this drug? Haven't taken any yet and wish to be fully informed before doing so. Thanks.

re: Meniere's/SERC - views!!! Madeline 0:31 am saturday july 8, 2000
I wonder what county you are in. I understood that SERC was not available in the USA. It is however widely used in England and seems to be the drug of wonders for Menier's suffer's. If I am wrong about not being able to get it in the US PLEASE let me know as I would be very interested in using this myself. A little history of me is that I have had Menier's for 6 years. I am now completly deaf in one ear and am having tone changes in my good ear with everyday dizzyness and brain fog. I have just started taking Valium which has made things much better but from what I have been reading this good spell is only temporary. I wish you well and hope you have been able to get SERC perscribed for you.
Please feel free to e-mail me at any time, I am a good listner.. Madeline

SHUNT SURGERY Madeline 0:34 am saturday july 8, 2000
I was wondering if anyone could tell me the positives and negatives on SHUNT surgery. It has been suggested to me but I am scared to death to try surgery before I get anyones and everyones imput on this.
Thanks, dizzy and foggy - madeline

re: SHUNT SURGERY Beverly 9:34 am sunday july 9, 2000
Hi Madeline, I read your emails and had to give you my "two cents" on the shunt surgery. I had constant dizziness, nausea and vomiting, off balance etc, for about 5 weeks without end. Sometimes, having 2 attacks per day. I left my job on April 2 and have not been back yet. I had the shunt surgery on May 23 and for the first 3 - 4 weeks, I continued to have attacks, but not every day, several times per week. It has now been almost 7 weeks and I have had 2 attacks, much less severe, in the past 2 weeks, so the shunt is working. It just takes some time to work.
I would definately have the surgery. It is not bad at all. I went home the same day after the surgery. I felt fine. There is no pain, just a scar behind the ear that the shunt is placed in. My scar is hardly noticeable now. I too take valium, I break a 5 mg pill in half and take 2 1/2 mg. and it really works for me. Now when I feel an attack coming on I take my pill, lay down and within half hour or so, it is over and I can continue.
I am hoping to return to work tomorrow. I am excited and at the same time nervous. I am a nurse practitioner, working in a rheumatology office that is very busy. Please keep me posted, but I think the shunt is the next step for you. So far, and I have read and talked to many people, you get as many different ideas as you talk to people. I saw 3 different MDs and all 3 had different ideas. Choose one and stick to what he has to say, then form your own opinions. My hearing still comes and goes in my right ear. Somedays, it is real bad and the next I can hear pretty good.( It could be that I am just getting used to it and learning to read lips well.)
Would love to know what you decide. Beverly.

Cure Shelley 4:34 pm friday july 14, 2000
Hi there everybody. Well I am currently in the process of being diagnosed with Menier's.... it has not yet been confirmed but reading web pages like Greg's I am sure that I have got it. Anyway, what I want to know is from all your experience, will I ever be cured? Will this buzzing in my ear ever stop? I am so desperate to get this sorted that I will try anything to make all the awful effects go away!!! I would not wish it on my worst enemy!
By the way I am all the way from England, nice to "meet" you.

Vertigo/Meniere's Disease Gina12:44 pm thursday july 20, 2000
Help:
I'm looking for any information on these diseases for my dad but need this info in Spanish. Can anyone guide me to a website that will provide this for me. Thanks a lot. We're in the initial learning stages of this illness.

re: Cure Greg2 8:51 pm thursday july 20, 2000
Hi Shelley:
Here's a short note from the colony, near Niagara Falls! Sadly, it's not likely that the buzzing will stop, as far as I can tell. It has been about ten years since I was diagnosed. You wil have to learn to get your rest, including naps if necessary, and to rid your life of stress so that you don't get sick. I think of this aspect as Meniere's gift to me.
Everyone has a different story, but I have been helped by going to a naturopath and finding out what supplements I need. I have not had a dizzy spell in three years, and feel fine if I look out for myself. Of course mose doctors will not want to hear about what you are doing for yourself, but they aren't puking, either! Youy need to try whatever works, and don't be afraid to experiment a little.
Duiretics did very little for me, and I took SERC for about 2 1/2 years before I just tossed the bottle away.
I hope that you will be helped by this letter, and I know that you will be helped by this discussion group. This is my most regularly visited site. Feel free to mail me if you have any questions or need a shoulder. No one understands the way this site understands. Good luck. Greg2

thumping in ear driving me crazy! Crissa 1:03 pm monday july 31, 2000
I recently developed this terribly annoying 'spasm' in my left ear. It feels like a muscle twitching (similar to an eyelid twitch) but inside my ear canal. When it spasms it's a loud 'thumping' inside my head. It usually lasts for 2-3 hours and comes and goes on a daily basis. Has anyone dealt with this before?

in both ears??what's next??no balance??? Marie 9:23 pm monday july 31, 2000
I have been suffering with this so under rated..Dr. demeaning disease since 1991. First one ear then, now I think the other. I have asked the doctors what if it goes to my other ear? How will I walk? How will I function?
I had a great career...lost it...just returning to a great possible career and low and behold the pressure...swoshy..wobly..unable to comprehend..to absorb every day info is back!!!Has anyone lived through a bout of Meniere's in both ears and functioned again. I have had the shunt surgury in one ear....
No offense to the wonderful doctor's who try to help...but if you haven't experienced it for years at a time...you don't know how life disrupting it is....
I am going to end up wheel chair bound?? Incoherent??? A babbling idiot??? I need some insight please!!!!!!!!

Vertigo- Low Blood Sugar? Rick 1:11 pm monday august 7, 2000
I've been trying to discover anything that my Vertigo attacks had in common before they started. I've had several vertigo attacks this last year which has helped as far as identifying possible trends. One thing for sure is Stress. This has probably been the most stressful time in my life which no doubt is the reason for the multiple attacks. But besides that which we have little control over, I noticed that every attack I've ever had was prior to a meal and also several hours since I had eaten last. Thinking that it might be low blood sugar, I started a diet higher in protien than I had and made sure I ate something high in protien every hour or two. I haven't had any more attacks but then also the stress level is way down from what it used to be. So it may be a coincidence. But for sure it relieved the constant dizziness ( lightheadedness ). So even if I haven't found a cure for my vertigo, at least I feel better.
I read of another person who said they cured their vertigo and said menieres was caused by histimines. Not that I agree or disagree with his cause, he stated he had cured his menieres with a high protien diet. Now it seems that two of us have stumbled onto the high protien thing via two different avenues. I would be curious if anybody else has heard of or had any success with a high protien diet.
There has also been times I thought I was on the verge of a vertigo attack and have taken Tylenol and the symptoms subside. I've also had one other person tell me they had simular results with asperin. Anybody else feel this way?
I don't won't to mislead anybody and I am really only talking about the vertigo attacks and dizziness. The ringing in the ears is as loud as ever and the fullness is ever present, but those I can deal with.
Thanks,
Rick

re: Sac Decompression over Shunt Rick 9:19 am wednesday august 9, 2000
I had gone a long time without a spell and ate a banana one night. The next day I had a really bad day with the dizzies and I can't remember if I had a vertigo attack or not. But since then I have stayed away from anything with high levels of potassium.

meniere's disease Brenda 12:21 pm monday august 14, 2000
I have just been diagnoised with Meniere's disease and would like to have some feedback from others. My episode began on July 15th while attending my husband's grandmother's 80th birthday party. I began feeling lightheaded and nauseated. I told my husband that I was going home (12 miles), but he suggested that I go to his grandmothers house and lie down. But no, I had to drive myself home. Needless to say, that 12 mile trip was a big mistake. It took forever because I had to drive so slow. When I got home, I had three small emesis. I put a call into my family doctor and he told me to take some Aleve and if I wasn't better in the morning (Sunday) to let him know. Sunday morning came and I was worse. That afternoon I took myself to our local hospital and was diagnosed with inner ear infection. I was given Meclizine to take and also a dramamine injection and sent home. Monday came and I was worse yet. I couldn't get my head off the pillow without vomiting.
I went in to see my family physician, and he told me to continue with the Meclizine and gave me Compazine for the nausea. Tuesday I was not any better, so I called my doctor and he increased my Meclizine to 2 tablets every 6 hours. Wednesday was not better, so by Thursday, I was back to see the doctor. At this time he put me on HCTZ (Hydrochlorot) 1/2 tablet daily as a diuretic and scheduled me for an ECG. By Monday the results of the ECG came back ok, and he increased the HCTZ to 1 tablet daily and continue with the Meclizine at 2 tablets every 6 hours. He also sent me to an ENT. The ENT had me take a hearing test in which it was discovered that I have some hearing loss on the left side. She also had me come back for and ENG and MRI. Both those tests have came back ok, but she changed my medication from the Meclizine to Valium. She has also made an appointment with a neurologist because she thinks I might also have some type of underlying neurological problem that the medication is not responding to. At this time, I do not have the nausea/vomiting at this time, but I tire very easily. There is a continuous full feeling in my ear and loud noises give me a headache. I also have a stiff neck soreness, like I have slept wrong. I have not been able to work, as I am a Paramedic, and this has caused me to be depressed.It has also put us in a financial bind. Has anyone else had an inital episode that has lasted this long? Is there any type of disability available for people out there with Meniere's disease? Any insight you can give me will be appreciated. Tomorrow will be my 30th day of this episode, mainly right now my symptoms include imbalance, ear fullness, slight headache and the neck discomfort.
Thanks, Brenda

re: Vertigo- Low Blood Sugar? Beverly 11:14 pm monday august 21, 2000
Rick, I am so glad to have read your message tonight. I have only been diagnosed with MD since the end of March. I had just gone through a very stressful time that had lasted several months. The dizziness hit me very hard right away with the n/v and diarrhea. I was given Antivert and Diamox and I did a very low salt diet. I lost 12 pounds on the diet, because you really can't eat anything due to the salt and I was on 1000mg per day. That combination did nothing. On May 23rd I had a shunt placed in my right ear. Since then, not much better. I did notice that if I don't eat about every 2-3 hours, I would start to feel lightheaded. I would eat and it would go away. I also found that if I took a Tylenol that made it better too. So needless to say, every day I take a Tylenol and 2.5 mg of Valium and that gets me past the lightheadedness and I can function. I tried for several day without it and it was horrible.
This past Friday, I had not had an attack for about 10 days, then wham, the biggest attack ever. Lasted over 24 hours with severe vomiting, diarrhea and horrible dizziness. After the attack you just feel so wiped out. Also the brain fog. I just can't seem to get anything right now. My brain seems to be frozen in dumb. (I am a nurse practitioner, not dumb, however,am just not able to function at all in an intelligent manner. That is very scary. WillI have to give allthat up? I am going to my surgeon tomorrow to talk about the next step, he recommends nerve resection or labrinthectomy. I will keep you posted. But just wanted to let you know that the Tylenol and the food really do make a difference.I feel that I have really warded off attacks by eating food. Talk to you soon. Beverly.

re: meniere's disease Beverly 11:23 pm monday august 21, 2000
Brenda, I can really relate to what you have just shared with all of us. I am nurse practitioner and have not worked now for 24 weeks and have no income. My husband works and we are ok for now, but things are very tough. I was just diagnosed with Meniere's disease and have had a shunt placed already in my right ear, tono avail. That did nothing. I tried the diuretics and the antivert, to no avail. The only thing that really works for me is 2.5 mg of Valium and lay down and rest. I do find that I must eat about every 2 - 3 hours and I take Tylenol for the discomfort in my head. I have noises in my ear like steam rushing out all the time. Days it is very loud and other days it is less. I am going to surgeon tomorrow for more advice. I can't go on like this. There is no disability for this. I spoke to Social Security Disability and they told me I must be out of work for one year before they will start the application.
I am going nuts not working. I have never not worked. I have had weeks without an attack and then several attacks in one day. So I really can not work at this time. It is very depressing. Somedays, I think I will go nuts. The brain fog is terrible, too. I feel like I have forgotten everything Iever knew anyway. I also have a hard time reading. I have large piles of nursing magazines, that I have not read yet and don't know when I will be able to read them.
I do know what you are going through. It is terrible.K eep me posted how you are doing. By the way, what state do you live in? I am in Phoenix. Bye for now. beverly.

(no subject) DEE 10:23 pm tuesday august 22, 2000
HELLO, My name is Dee and I have menier`s desease I have been going through a very difficult time lately, I recently had a second shunt surgery and has`t went very welL. I am not real educated and especially on menier`s but also trying to learn more about it. I have talked to a few people online and they all mostly just cut me down and made me feel like a fool for not knowing more than I do. But then I got a e-mail from the nicest guy who has helped me more than he knows he always is so nice and he has been so helpful with his advice, and he always responds back. I can`t believe he could be so concerned about someone he doesn`t even know neither can words ever express my gratitude, thanks Greg- Dee

help laura 2:20 pm wednesday august 23, 2000
my dad has been suffering since christmas from what we were told was an inner ear infection. he has been rushed to the e.r. about 7 times in the last 8 months. the last time was on wednesday Aug. 16. i woke up this morning to hear him vomitting again. i called when i got to work to checck on him and my mother said that she was taking him to a new specialist. i have been looking on the internet all day about Meniere's disease.(the new doctor's diagnosis). i was interested in all of the allergy info that i found. he is allergic to grass, mold, pork, milk to name a few. my main concern is that he is a diabetic. he has a pump (cathedar-like) to get insulin all day. the epsiodes he has been having are definately taking a toll on his body. he diabedes is very severe. do you have any advice for him? he is 55 years old.

doctors and meniere's jeff 6:54 pm thursday august 24, 2000
do others of you have the same problem with this gosh-awful disorder that i do? it seems as though doctors tend to act as though meniere's is some sort of psychiatric problem, or just a nuisance. i lived 42 years before developing this problem without a single problem, but now my inner ear problem is somehow (according to several doctors) my inability to deal with stress. to ENT doctors it's meniere's, but they have no idea how to treat it, so what is the use of even knowing that? the pain of this can just be unbearable, yet i have even had a doctor tell me i need antidepressants for this. it's enough to make me mad and it is pathetic what a person has to go through to get any help with inner ear problems. after over a year of this i have yet to find a competent doctor and definately can't find one that gives a damn.
can y'all relate?
jeff

reasearch is out there Jo 10:04 am friday august 25, 2000
I had shunt surgery in January of 2000. Had my first last friday. I've been dealing with stuffiness since the surgery but it got really bad in the last couple of months. Went to see my ENT. He is a specialist out of Evanston/Northwestern in Chicago. He put me on a Durietic and that has helped somewhat but I have joined a group of Menier sufferes for some reasearch to get to the bottom of this awfull disease. When and if I have another attack I have a pager number that I am to call and the doctor will come to my house to draw blood. They need to see what is being released in the blood during an active episode. As you know all of us pretty much go to the doctor after the episode is pasted. Then a month later he will take blood again and compare the two. There is finally some money being funded for reasearch and some of the possible causes of this disease is some kind of an immflamation in the inner ear. By doing case studies and seeing the results, possible relife or cure is out there. I will do what ever I can to help others and hopefully myself to try and live a full and active life. Not only for myself but for my supportive family who have had to endure liveing with someone who has Meniers. By the way I have had this for 13 years. It Started in my right ear lasted for about 7 years and then burnt out and went into my left ear. I promised myself I will never have anymore surgeys. When they start messing with the brain, I dwell on the days that are good and some what bareable. I don't want to take a risk of something happening during that surgery. Sorry for being long winded. Hope this all shed some new light. Stay strong!