Success stories

Discussion in 'Meniere's Disease "Database"' started by james, Mar 14, 2010.

ATTN: Our forums have moved here! You can still read these forums but if you'd like to participate, mosey on over to the new location.

  1. james

    james ''Everywhere I go there I am'' GS

    Thought I would add this link from Floss,who is doing well with increased exercise.,30114.0.html
  2. peronmi

    peronmi New Member

    Hi Mike,
    I became a member of this forum tonite after reading your interesting post. Hopefully my first message gets posted for comments.

    I have been a member of the SCDS Support group for over a year having been diagnosed (via two CT Scans) with bi-lateral Superior Canal Dehiscence Syndrome (SCDS). Since my symptoms exclude vertigo or major dizziness (primary complaints: severe bi-lat hearing loss, tinnitus, fullness, distortion, autophony and Tullio), my ENT, Dr. Zappia at the Michigan Ear Institute is scheduled to perform an endo sac decompression (ESD) with shunt and perilymphatic fistula (PLF) repair to my worse ear in 3 weeks.

    Dr. Z and my previous ENT in San Diego believe I've got Cochlear Hydrops/Menieres going on as well. Since the SCDS repair would involve brain surgery (craniotomy), he would like to try these two out-patient procedures first.

    I'm seeking member input on the advisability of his recommendations.

    Thanks in advance,

  3. Linda1002

    Linda1002 New Member

    Mike - You might want to start a new thread and copy your post there. It will probably not get seen often in this thread.
  4. peronmi

    peronmi New Member

    Thanks for the excellent suggestion. Will do ao as soon as I become familiar with the web site protocol

  5. CGR

    CGR Guest

    Just post in the living room and youll get responses
  6. leonard

    leonard MM since 2003

    James asked that I repost this here as well:

    I haven't been on the board in a while. But, I wanted to tell my story so other people like me can know there are things you can do about this awful disease. I do not present my experience as a guide, and I understand that every case is different. No one should make a decision based on what I went through. BUT, I wish that I had not endured the suffering as long as I did before seeking agressive treatment.

    I live out in the country. The nearest town of any size is about 100,000 and although there is a great medical community there, I found out there were absolutely no doctors that knew enough about Meniere's disease to offer any real help. After several years of torture, I found a doctor about 2 hours away in Dallas that was knowledgeable, and able to help me. Even then, after talking through the options, all the treatments sounded so permanent and risky that I just couldn't bring myself to make a decision to go through with any of them. Finally, one day I realized that life wasn't worth living in the condition I was in. So, I went back to the doctor and had a long, long talk with him and decided to do something. After talking through all the options including labrythectomy, VNS, and some others, I opted for the gentamycin therapy first. But, if that had not worked, I was willing to do anything to stop the spinning.

    I am unilateral, diagnosed in 2003, and had reached a point in the progression that my life's daily functions' were crippled if not stopped altogether. At my worst, I used a cane or a walker just to get through the house. The violent spinning vertigo sessions were happening two to three times a week and lasting for several hours at a time. In between attacks, I didn't have enough balance to stand on my own.

    The violent vertigo attacks lasted from 2 to 8 hours on average with my longest ever being 14 hours. I would heave so badly from nausea that my ribs would be sore for days. I found that ativan was the only thing that would help the worst attacks, and all that did was knock me out for an hour or so until I woke up again retching and spinning. Many days and nights I layed on the bed gripping the sheets with white knuckles because it felt like the bed was trying to throw me off. I once described it to my wife as getting on the tilt-a-whirl ride at the fair, then spinning the entire ride inside a giant gyroscope and locking the speed control on high. Then, imagine doing all this while sick with a nauseating stomach virus.

    In between the bad attacks I would have lots of "mini" attacks that lasted for under a minute. Those were scary when I was driving. And when trying to conduct business, people that didn't know me thought I was on something illegal. The combination of the viloent vertigo attacks and the mini dizzy spells pretty much defined my life for 6 years. Then it got worse. For over a year I never regained my balance between attacks. I couldn't take two steps without holding on to something. The floor felt like floating blocks of wood. I resorted to a cane for a while, then even that wasn't enough. That's when I knew that I had to go back to the otoneurologist and do something. Anything. I just had to have some relief.

    I had rejected the idea of gentamycin two years earlier because I wanted to protect what hearing I had left in my affected ear. I was still able to have functional hearing with a good hearing aid, and I wasn't willing to risk losing what hearing I had left. But eventually, hearing became secondary to just being able to walk. The gent did kill what usable hearing I had left, but the rest of my life has now returned to normal. I can walk, run, work, even climb a ladder without fear of falling! I have lost 63lbs because I am active again!

    I can't locate the source of a sound with just one ear, and my family has learned that there can only be one noise in a room at a time if I am to understand anything. I have to mute the TV to carry on a coversation, and resturants are still difficult. My co-workers all know that I am deaf in one ear, and they allow me to sit where my good ear is facing them. I still can't tolerate lound sounds like the PA system at a church. Even though the bad ear is mostly deaf, loud sounds still hurt in the bad ear. (I don't understand that one, but I work around it.)

    The good news is, I got my life back! I'm not afraid to hold my grandchildren any more! I haven't had one dizzy spell, not even a little one in a YEAR! I have enough balance to climb a ladder without fear. I can ride in a boat without getting queasy! I can do everything I was ever able to do, except hear well.

    I shouldn't have endured the vertigo and loss of balance as long as I did. I lost several years of my life to this disease that I can never get back. No one who hasn't felt what we feel can understand the debilitating affects of this condition. The worst part is, you still look okay. To an outsider you look drunk or drugged out. And honestly, most of the time that was the only way I could get through a day, with medication. I cannot believe how good it feels to be off of valium, ativan, meclazine, diazide, phenegran, and a few others that I used to depend on just to be able to get by. I haven't taken any pills of any kind in a year now!

    I cannot say what treatment will help other people. But I can say that with the help of an experienced otoneurologist who knows and performs VNS surgeries, labrythectomys, and cochlear implant surgeries, I was able to find a treatment that saved my life. And I know now that if the Meniere's comes back, I will get even more agressive and do whatever it takes to fight this disease.

    To all my fellow Menierr's sufferers, I hope my words encourage you. Yes this disease is incurable. Yes you will never be like you once were. Yes it is horrible and no one else understands. BUT, you have to take charge and seek out the RIGHT doctors to get some help.

  7. SweetTater

    SweetTater New Member

    I'm so happy for you Leonard! I am in Texas - just wondering who is your Dr.?
  8. irish

    irish New Member

    I am new to the forum but have dealt with Meniere's for quite some time. I am now considering a laby. I have read many posts about individual experiences and that has been helpful. Is anyone say 10 years or more post laby? I am 49 and wondering how having a laby will affect the aging process (Having only one balance system etc..) Any thoughts?
  9. amberini

    amberini New Member

    Irish, have you exhausted all other avenues before considering surgery?
  10. irish

    irish New Member

    All but homeopathic and chiropractic avenues. I actually found my doctor on one of these forums. In Nov I had endolymphatic sac decompression. Things were good for awhile and then drop attacks started. These were new and very scary. I have only had three but my doctor thinks this will progress rather quickly and waiting just increases my chances of serious injury. Driving has become an issue as well.
  11. james

    james ''Everywhere I go there I am'' GS

    Hey Irish and welcome to the forum.
    You will get more responses if you post this in the Front porch section.Start a new thread there.
  12. linnybun

    linnybun New Member

    About six weeks ago I was diagnosed with Meniers. I had attacks of vertigo with vomiting, that kept me in bed for three days, pressure in my ears, and constant ringing. My doctor told me to cut the caffeine and only cut extra salt in my diet. My hearing test was terrible and he put me on a zpak of prednisone for one week and a mild diuretic. I felt immediately better, and the pressure in ear was relieved, but still had some dizziness and a couple severe attacks of vertigo. The last attack (which began with a sudden ear pressure which seems to be related to barometeric pressure, since I immediately noticed the heavy air) was on a trip to South Padre and consisted of vomiting outside a store, through a hotel lobby, up the elevator, through the halls and continued in the room for quite some time. After that, nobody would do anything because they were afraid to leave me, and i was afraid to be out, so we went home.

    I began reading this forum and decided to restrict my own sodium. I decided to quit all aspartame, caffeine (though i have an occasional chocolate) and 400 to 1000 mg of sodium.

    It was hard because I had no idea how much sodium was in everything and I love sunflower seeds. I did find that raw seeds in the shell were even better tasting, so that wasn't a problem. Watching bread, and milk among the other items with sodium was a real adjustment.

    I have now had 8 days of no pressure, vertigo, and no ringing in my ears. The no ringing is amazing because I have had it for so many years that it didn't bother me. What I did notice is that when the diuretic would be wearing off, the ringing would become unbearable and often cause dizziness at night and I would wake up having an attack.

    I went to the doctor and had a new hearing exam after 5 days of my diet change and amazed everyone! Apparently they were going to talk to me about getting a hearing aid, and now my hearing is better than ever!

    The doctor gave me some suggestions and I wanted to share them. Every evening I now use a netti pot to irrigate my sinisus (common in Europe) and follow up with nasonex in my nostrils (much easier than i thought), I shower every night so that pollens in my hair and on my skin are washed off, I bought a allergy mattress protector and pillow protectors, and she said to change the air filters often. I have to follow up with allergy testing and a physical therapist because the vestibular damage has caused some balance issues that we need to address. I read about using local honey to help my immune system, so I am also going to do that.

    If I remember any other advice, I will share it.

    I am truly thankful for the advice I got on this forum, and will let you know how my Meniers continues.


    Linda iacono
  13. tm53

    tm53 New Member

    Congrats Linnybun

    I am a little concerned about your sodium intake, you do need the stuff to live. Have you discussed this with your Dr?
  14. linnybun

    linnybun New Member

    Tm 53,

    I tried to go lower than the 1000 mg but it just wasn't possible for me. I stay relatively close to the 1000mg. I was doing great until I ate out one night (thought I was choosing well) and ate what I shouldn't. I got mild ringing shortly after dinner and had an all out attack with vertigo the following day after a time out at a park. I have had one other attack yesterday after being outside doing mild yard work. I have been thinking that it seems I don't take the heat outside as well as in the past, but I really don't know if that was just coincidence.
    My husband was discussing my Meniers with a friend of his and found that his wife also suffers from it. He said that they have soft water unit and changed to potassium rather than salt and saw a significant decrease in the number of his wife's attacks. We have soft water also, but I didn't realize it could be absorbed through my skin (just don't drink it) so apparently I am getting more than I realized. It was hard to find anything stating this, but I did find this one site, so it is worth a try to me.

    Yesterday I did find a Kettle chip with no salt, it was pretty awesome!
  15. leonard

    leonard MM since 2003

    Sorry for the late reply. Dr. Bob Peters at Medical City Hospital in Dallas.
  16. SweetTater

    SweetTater New Member

    Thanks Leonard!
  17. Boomer Ann

    Boomer Ann Even Baby-Boehner has nothing on me....

    Hi Linda,

    In 2002, before I ever had symptoms of Meniere's, I had symptoms of Congestive Heart Failure. I had no health insurance, no money, and no doctor would see me. I took myself to the ER and they laughed me right out because according to them, my symptoms were not severe enough. This, despite the fact that my body was waterlogged, my belly was extended (and it made water-sloshing noises when I walked), my feet and ankles full of edema, and I was exhausted just getting up and walking anywhere. So...given no doctor wanted me, I researched it on my own and learned to cut my sodium intake IN ALL RESPECTS, FROM ALL SOURCES, to 500 mg per day. (Note: Not really advisable.)

    There went the symptoms of CHF. Within just a few weeks I felt good again. Not perfect, but better.


    One must use CAUTION when reducing sodium because your heart muscle NEEDS SODIUM to beat. I learned the hard way that 500 mg is too little sodium. Within a few months of beginning my new diet, where I lost pounds and pounds initially (mainly water), I noticed that my FEET CRAMPED up at night, so hard like the charley-horse you get in your calf muscle, feeling like it was going to actually break my foot. I suffered through those NIGHTLY, then taking muscle relaxants (flexiril) to help, only to learn...

    500 mg is too little. 1200 - 1500 is optimal. Also, the key is to BALANCE your sodium intake well, making sure that once you find the right amount for health that you can tolerate, maintain that amount daily.

    Sometimes it's just the too much today, too little tomorrow, that causes the vestibular issues to go haywire. Balance and consistency are needed.

    I'm learning to now eat normal foods, none of which are processed, by the way, except bread...and I add only a few grains of salt to things that (to me) just need it like eggs and potatoes. Any canned foods I buy have either no salt added or reduced sodium. So-called "healthy" tv dinners can be some of the worst offenders, as well as "healthy" soups, etc. My diet consists almost entirely of whole foods, beginning with fruits and veggies, nuts and seeds, whole grains, beans, legumes, etc. You know, the healthy stuff. :)

    It has been in the news recently that diets too low in sodium can be life threatening. Heart attacks because of insufficient electrolytes (sodium and potassium) in the blood.

    Yes, they can. So be careful.
  18. vanisdizzy

    vanisdizzy Im sorry we met here, but glad to meet you.

    This is a great idea. Thanks.
  19. james

    james ''Everywhere I go there I am'' GS

    Very inspiring thread about cochlear implants.,32744.0.html
  20. JLR39

    JLR39 New Member

    Hi James:

    I belong to the Canadian HARD of HEARING Association (CHHA) and yesterday we hosted the Sunnybrook Hospital Cochlear Implant Reunion. Sunnybrook have performed so many CI they have numerous annual reunions through Ontario.

    We had David Shippe who is in charge of the program, Dr. Vincent Lim who is working on hair cell regeneration and a rep from Med El, a CI manufacturer. Did you know that birds and some other creatures automatically can regrow their hair cells?

    It was a very informative day and oh, so many questions for the speakers.


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