Success stories

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

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  1. nwspin

    nwspin New Member


    I think it is too soon to judge if the ESD has failed, you are only 5 weeks post surgery. Prior to my ESD w/ shunt I asked my doctor what he considered a successful result from the surgery and he told me if it eliminated the vertigo or cut down the number of attacks it would be successful. I would call your doctor to let him know what is going on. If you start having clusters of attacks then I would be a little more concerned but 1 or 2 is just a bump in the road.

    I would not consider the ESD a cure, it just relieves some of the symptoms of Meniere's. FYI, it took about 6 months before my ear "settled" down, I didn't have any vertigo post surgery but I did have a lot of odd sensations. Did they install a shunt or did they just decompress the Sac?
  2. JLR39

    JLR39 New Member

    I've been on John of Ohio's regimen for approximately a month now and have had good days and poor days. The strange thing is, this past week has been fairly good. Yesterday I actually went out on my own and picked up some plants for the garden and was feeling good. By supper time I wasn't feeling quite that great and did some deep breathing during the evening. When I woke up this morning I felt terrible. I'm not aware I had an attack, but my head felt really 'yukie'. :mad: I went back to bed for a couple of hours. As the day has worn on I've improved, but continue to feel very tired. I'm just wondering if any of you have experienced anything similar? ???

  3. joy

    joy New Member,18123.msg324797.html#msg324797

    My Alfa PXP is still working although since I started Prozac last month I've had a few minor symptoms pop back up.

    Off Prozac completely now & feeling better. Dizzies are going away. Haven't had any headache pain in about a week. The PXP is still on!
  4. AKJim

    AKJim Giant's Causeway Northern Ireland

    I was diagnosed with MM in my left ear in 1970. After about three years that ear burned out and I went into remission. In 1983 I was diagnosed with "Atypical Meniere's" in my right ear. In 1986 I began having vertigo spells. In the early 90s the vertigo changed and became much worse. In 1992 I under went a right middle ear exploration. They found and patched three perilymphatic fistulas and I've been vertigo free since 1992. Bilateral cochlear implants have restored my hearing.

  5. amfroggy

    amfroggy New Member

    I was diagnosed with MM last week and then I joined this form for information and support. Thanks to all of you who offered comforting words. I was very scared and it was very nice to know there were people who understood this horrible disease. After doing some research on here and other sources, I started to doubt I had MM. I never had a vertigo attack. I've had 3 bouts of dizziness when I woke up that lasted less than an hour each time. All of my troubles started after a severe sinus infection. Although, I've always had a faint tinnitus it got really bad and my hearing was extremely distorted for a few weeks, it is much better now. I decided it was time to see another ENT and thank goodness I did! I told him what the original ENT said and his first comment was, "I highly doubt it's MM". He tested my hearing and it was perfect. He said if it were true MM, I would have at least a small hearing loss, mine was 100%. He said since the dizziness is always in the morning he said it is probably BBPV. He also said since all of my troubles started with the sinus infection from hell I have a good case of ETD. He prescribed 800mg Ibuprophen 3x a day, eat soft foods for a week, wear my bite guard (I have TMJ and am an anxiety grinder) and follow up in two months unless something happens before then. I don't know what my future holds but right now, it seems much less daunting.

    The thing that really bugged me was that he said he suspects what clinic gave me the MM diagnosis because he's seen MANY of their patients after they were treated the same way. They didn't listen to me and only gave me one hearing test (which they said showed hearing loss) before giving me that horrible diagnosis. My new ENT said he has only seen 2 actual MM cases in his entire career and this other place gives it out by the dozens. They also gave me this brochure that scared me in itself. The cartoon guy on the cover is holding his head in one hand and the wall with the other. He has a frightened look on his face and there are swirls around his head indicating an attack. HOW HORRIBLE IS THAT?!?! It may as well said, "Welcome to this God awful disease - hopefully you won't end up like this poor chump but we won't know for sure!"

    Anyway, now that I've shared my story I wanted you all to know that I have learned something very important. I never knew MM existed until a few weeks ago and I am so sorry you all have to suffer through this!!! I have learned that you all are very strong people and I think it is wonderful how you take care of each other. I will no longer complain about insignificant things such as lines at the grocery store or whine about what a jerk my boss was being at work. I now understand how lucky I am to be out in the world and this experience has given me an appreciation of the limitations of others. I took my health for granted - I will never do that again. I will apprecriate every day I am feeling good. I am currently seeking out MM suffers in my area so that I can offer my assistance and try to help out any way I can. I think I had this experience for a reason and I intend to do whatever I can to make someone's life a little better.
  6. Taximom5

    Taximom5 New Member

    froggy, what is ETD?
  7. wileyriley

    wileyriley New Member

    taximom-i think it is eustachian tube disorder.
  8. Taximom5

    Taximom5 New Member

  9. Angelea

    Angelea New Member


    You sound like a very nice, compassionate person! I am so glad you don't have Meniere's. I think one of the most frustrating things about having ear problems is that it is virtually impossible to look into the ear and actually see what is going on. Unless you have overt fluid behind your ear drum, then it seems the doctors just have to base their diagnosis on the symptoms reported (unless you have surgery, and even then they may not see a problem). There are lots of examples on this site of people going undiagnosed or misdiagnosed, so I am glad you found out sooner rather than later. I hope your problems are short-lived!

    For all the complaining and hardship Meniere's has caused me, it has also given me the gift of living in the present moment and of gratitude. I have to work at it, but I remind myself not to worry about the future. One moment leads to another and in this moment I am fully functioning and, like you, no longer take that for granted. I am now 3 months vertigo-free. Though I have started to experience some pressure and possibly hearing loss in my "good" ear the past 2 weeks. Ugh...
  10. vermonter

    vermonter New Member

    Hello Folks,
    Here is my success story - hope it helps someone else.
    I was diagnosed with MM in I believe 1992. At the time I had an awful echo in my ears - heard everything twice and it sounded like my head was in a barrel. The ENT gave me a course of some kind of diuretic and that cleared it up in just a few days and then it went dormant, I - not knowing anything about MM at the time, ignored the disease - thinking it was nothing serious. Then- about Jan 2008 I started noticing some slight dizziness - so I went to a new ENT in Panama City,Florida and He re-diagnosed MM and - strangely - my wife was diagnosed with it at the same time. She had just recently had a bout of Bells Palsy and the Doc.thought that was what brought hers on. She was having some vertigo spells.
    The Doc put us on a low sodium diet and that was all. We then moved to Vermont, and in August of last year, We were in a sporting goods store and as I was walking out - my first vertigo spell hit and I went down hard - room spinning, awful nausea,weakness, sweating. Thought I was dying at first. Wife had to drive home and I vomited half way home. Well - that ended life as we knew it - and we were both very determined to find some relief - if not a cure.

    We took a multi pronged approach - Did a lot of on - line research - got serious about the low sodium diet - Found this web site and started on the JOH regimen - read somewhere that the artificial sweetener "Aspartame" can cause MM like symptoms - and that was the only sweetener I had used for about three years and I still think that was my trigger. When I quit that poison, I noticed an almost immediate - major improvement in the frequency and severity of the attacks, and along with the JOH regimen - We are both almost symptom free now - I have not had a full blown spell since March 22 and all that is left now is the tinnitus and that varies in intensity from day to day.

    Neither of us are able to tolerate the "Lysine" or the "Beta Glucans" in the JOH regimen. The Lysine causes light headedness for me and the Beta Glucans makes the Tinnitus much worse. We don't use the Ginkgo Biloba either.

    I am taking 4 of the Lemon Bioflavonoid pills now to see if that will help with the ringing.
    Going out in the boat fishing in the morning - it sure seems nice to be able to do that again. Thanks all.
    I should add - that during the early days of our battle we also went to a NUCCA practitioner who helped us with other pain problems but had little or no effect on our MM symptoms - except for me - the first three adjustments I had triggered monster MM episodes the day after treatment.
    I also would like to add that the JOH regimen, as "JOHN OF OHIO" says - is not a quick fix. You need to be patient and give it an honest chance. Even though We can't tolerate all of the ingredients of it - the ones we do take have helped us greatly and continue to do so. We will stay on it for the rest of our lives - and We bless John of Ohio every day of our lives.
  11. JLR39

    JLR39 New Member

    I've been on John of Ohio's regimen since mid-April. I had a bad attack in May, but slowly things have been improving. Mind you, I still have my off days where my head doesn't feel that great . . . but over all, it's heading in the right direction.

    Certainly, JOH's regimen is worth a try for anyone that is at their wit's end. You can't put a price on your health.

  12. Carlavl`

    Carlavl` New Member

    Dear Angelea, and everyone else who wrote of their experience here.

    Today, we went back to see our specialist for our 4 weekly review. Usually The Dr gives my boyfriend steriods into the ear, and that gives him about 2 hours of being up and active each day, once his head clears, which is usually around lunch time.
    So today we turn up after our 2 hr drive, always fun :) and the Dr says we're going to try Gentamicin now.

    So to Angela and everyone else... thank you... I logged onto this site and searched "gentamicin" I found this post, and that helped us so much to understand what was about to happen.

    Chris slept this afternoon. He has very strange new noise's which are very loud and he is quiet wobbly on his feet. So fingers are crossed. He's been on the JOH for just over a week, no real definite changes yet, however he looks brighter, some days :)

    Thanks again to all...

    love and best wishes
    Carla xx
  13. Angelea

    Angelea New Member

    Hi Carla,

    I will keep my fingers crossed for him (and you!). Keep in mind that if he got a low-dose injection, it will likely take 7-14 days before the medicine to start to work. For me it took only 7 days after my 1st injection before I started to feel off-balance, a sign the gent is killing off the balance cells responsible for allowing vertigo to happen. That off-balance feeling peeked about a week or two later, then started to ease up. By about the 2nd month, I started to feel pretty normal in the balance department, though I still feel wobbly once in awhile in the dark or if I turn too fast. I have had no vertigo since the week following the gent injection and the period of imbalance, while strange feeling, was a huge improvement over having vertigo several times a week.

    Hang in there! Some people need 2-3 injections before getting relief from the vertigo, so be patient and don't give up.

  14. Angelea

    Angelea New Member

    Scott, Lisa and others who have had labys, I have a quick question:

    Do you still have tinnitus? I am still doing well after my gent injection, but have had a few recent attacks of borderline vertigo (I am able to function w/ 2 mg of Valium 'til they pass) but am going in for an ENG in a couple of weeks to be sure it's coming from my bad ear and that I am not having problems w/ my good ear. If it's my bad ear, I'll likely consider another gent injection. But I still get crazy episodes of buzzing and roaring. When discussing options w/ my doctor previously, I commented that I should have a laby so these noises would go away too, but he said a laby is not a guaranteed cure for tinnitus. I know it can be caused by many things and it can originate outside the ear, but was wondering what your experiences with it have been post-laby.

  15. Carlavl`

    Carlavl` New Member

    Hi Angela, Thanks for the extra info. Do you know how many mg of Gent you received? I'm thinking Chris probably got about 5mg into his inner ear (via gromet). He's noises are very loud and different, lots of bubbly sounds, and quiet wobbly already, I'm telling him that' s a good sign :) He's still very nauseated, but keeping down his JOH for me :):)

    Another drug, acyclovir/valtrex what was the staring dose that most people used? I'm sensing 800mg twice daily for about 10 days, then down to 400mg daily? I'm thinking of starting that in a few weeks, prior to any more Gent. (Dr wants to do Gent again in 4 weeks.. what are your thoughts? )

    Many thanks to all.... love Carlaxx
  16. Angelea

    Angelea New Member

    Hi Carlaxx,

    From what I've read about gent, it takes several days to a couple of weeks for it to begin to destroy the hair cells. I have had steroid injections, too, and in both cases I felt wobbly and got some vertigo in the day or two following the injections. Probably just from having fluid injected in the ear? Based on the little bit of history at the bottom of your post, Chris sounds like he's got a pretty miserable case. :-( But be patient. My doctor has done a ton of these shots and he said his average patient needs 2.5 injections before they get lasting relief. Your doctor's protocol sounds appropriate. I don't know what dose of gent I got, but I do know that my doctor uses the Johns Hopkins Low Dose Gentamicin protocol - I bet you could Google it. I happened to respond after 1 dose, but now 4+ months later I am having a little bit of occassional wobbliness (not quite vertigo) so may get another shot which my doctor told me might happen.

    I also tried acyclovir about 6 months into my diagnosis. My loading dose was 800 mg four times a day and I did get remission of my symptoms after the first week. I was on that dose for 1 month, then gradually began tapering the dose. Even at 800 mg 3 times a day, my vertigo returned within 24 hours. I went back up, got relief, then tried tapering again and had the same return of symptoms. My doctor was not comfortable keeping me on the highest dose indefinitely (though I felt ok with it-but obviously needed him to be willing to write the Rx but he would not). So that was the end of my antiviral therapy. Many people here report excellent results, however, at mainteance doses.
  17. Carlavl`

    Carlavl` New Member

    Thanks Angela. all the information helps.
  18. Carlavl`

    Carlavl` New Member

    Hi All,

    Today is day 6 post Gentamicin inj for Chris. He is experiencing same as what Angela describes. Wobbly head, learning to walk and move around again. He feels well for the first time in a long time. Not sure we'd deceide to do another Gent injection. Chris is now on the improve at day 6.... though we've just come through 4 days of Chris needing total care and being confined to bed. He still has the sounds in his ear, all the bubbling and crackling sounds of day 2 & 3 have passed.
    Having no vertigo, dizziness and nausea is very very good... he's smiling again :)

    Angela, how is the ringing in your ear now? Did you get really sick after your 1st injection of Gent? (like did you have someone around to care for you, as I'm caring for chris?)

    I sincerely hope no-one has to ever have a vertigo attack alone....

    thanks everyone,
    cheers Carla
  19. Angelea

    Angelea New Member

    Hi Carla,

    That's wonderful! Yes, it is such an odd feeling to be wobbly and off-balance, but to feel great. I know exactly what he means. I had some of my worst episodes of vertigo after intratympanic injections (steroids and gent). The doctor warned me that before they start working these bring on attacks for some people and they don't know why. small price to pay for eventually being vertigo-free. I think the gent requires a wait-and-see attitude. Some people need more than one injection to get permanent relief. Good luck and keep us all posted with Chris' progress.

    Yes, vertigo alone is scary, scary. I had to call a friend to break into my house one time to pick me up off the floor. Thank god I had my cell phone in my pocket, though I could barely see straight enough to find her number. That's a great friend and we had a good laugh about it afterward. :)

  20. Stanley Searra

    Stanley Searra New Member

    Hi yes a vertigo attack is very bad. I had 2 Gent injections. The first 1 was not that bad but the follow up injection was.. Very bad. I also had allot of pain with the second injection. I was fine for about 10 min then it hit me like you won't believe, Home was 65 km away and the drive was a killer, I was hanging out of the window, world spinning at full blast.It was bad but after 4-5 days i felt better..

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