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Discussion in 'Your Living Room' started by Riplip, Jan 16, 2019.

  1. Riplip

    Riplip Member

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    Well I've been wandering around here since the beginning of last year. I've taken in all kinds of information and applied most all of it to treating myself. A little background on me. I've had hearing loss and tinnitus in both ears since leaving the Army in 2000. In 2006 I had Sudden sensor neural hearing loss in my left ear and louder tinnitus. Since then lots of dizziness, and the feeling like I have ear muffs on and low bass type of tones seem louder than they should. In 2012 I had a very extreme vertigo attack that sent me to the ER. It lasted hours and I spent days recovering. This happened a couple times after as well. 2014-15 Major hearing loss to the right ear and crazy tinnitus and fullness. Never left. Multiple vertigo episodes since all different types and ranging in severity. I have been through multiple MRI's, VNG testing, the hot and cold air tests and the wearing the goggles tests and countless other things I can't think of right now. I've been to every ENT, Audiologist and neurologist in NH and throughout the VA. I was sent to see a specialist at Mass Eye and Ear Dr. Deventicia and he diagnosed me with MM both ears. He automatically told me he wouldn't renew my anti-virals that the VA ENT prescribed me after basically begging him to in March of 18. He said there is no research that proved they worked and I battled him for it and he wouldn't give in. I talked to my ENT and he says he will only do what the specialist says. So I will be out of AV's in 2 weeks. Not sure how that will go. Also he wants me to have a Cochlear implant done to my right ear right away since it is useless for hearing right now. Not sure I want to jump right into a surgery with a Dr. I just met. I have a follow up with him in April where I will take another hearing test as well. Right now I'm on the JOH, low salt since March. I try to stay active and go to the gym 4-6 times a week and I practice balance on the treadmill and stair mill. I use to run marathons and bike long distance races but haven't done those in 3 years. Trying to get back to it but I can't wear hearing aids during exercise and its been hard. I'm doing PT every other week and they have taught me that I lost a lot of balance especially in the dark. If I march in place with my eyes open I'm ok but when I close them I fall to my right. I'm working on that. Hopefully it gets better. Anyways this is long and all over the place but I guess that's been me for the last few years anyways. I hope everyone well and I guess I'm done venting for the day. Sorry for the long first post with many gaps. Cheers - John
     
  2. Pupper

    Pupper Active Member

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    Sorry about your issues Rip. So if you could sum up your status in a few bullet points, how would it look? I'm not sure where you're at from your post.

    spinning attacks? still get them?
    how deaf are you? is hearing in bad ear socially functional at all? Or "useless" as you say.
    daily unsteadiness? to what degree? can ride a bike etc.
    is there evidence that antivirals/JOH have been working for you?
     
  3. Riplip

    Riplip Member

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    Hey Pupper, I've read so many of your posts. I get spinning attacks but they are kind of short and sweet maybe 30-seconds to minutes maybe 4-5 times week. No hourly ones since April and I haven't had one with eyes jumping around since so I feel the JOH, Duretic, low sodium and anti viral are working. Not sure which specifically because I started them all at the same time. I am constantly dizzy or off and nauseous throughout almost everyday. I lose my balance when I get up from my desk quickly or move suddenly (not always). Been moving like a robot for months and had to go to PT to loosen up my back and neck muscles. My right ear is deaf without a hearing aid. With the aid it hears noises like locker room doors closing and loud noises but no voices and I cannot understand anything if its loud enough. My left ear is better with clarity but still need a hearing aid to hear. I can't hear the sound of the water when i'm brushing my teeth without my aids for example. I haven't been able to use a phone not on speaker in a couple of years. My status now is I'm maintaining. I feel like crap but at least I'm standing upright and not spinning on the floor. As usual my guard is on high alert constantly thinking about what changing on my hearing, my dizziness, my visual ques and my motion sickness feeling. Normal day for people with vestibular issues. Pretty much the only time I'm at peace is sleeping. Yup it sucks
     
  4. Pupper

    Pupper Active Member

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    So after you were diagnosed with bilat MD, was there no talk of destroying one or both of the balance nerves that are sending the incorrect signals to the brain? e.g. gentamicin injections or VNS surgery?

    "I am constantly dizzy or off and nauseous throughout almost everyday." I'm in that "constantly" category too. But without nausea. Nausea is a game changer. That really sucks man.

    It seems you're not an old person. So your terrible hearing and nausea are really unfortunate at this stage in your life. I'm sorry. It makes me feel less sorry for myself.

    One thing that's good about stopping the pill intake, is you get to see if they're actually helping or not. Can be an informative experience.
     
  5. AnneT

    AnneT Well-Known Member

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    Welcome riplip! Sorry you are also joining Club Hell.

    If you think the antivirals are helping, try your family doc or a walk in clinic - just tell them how helpful they are to you. Hopefully that’ll work.

    Your story sounds classic Menieres. But it might still be worth looking at the Migraine Associated Vertigo posts. There was a study that took Menieres patients who didn’t get better on diuretics and Serc, and treated them “as if” migraines. Many did very well. I think there is a huge crossover in the mechanisms.

    Personally I’m treating my condition from both angles. Most of what I know now about Menieres I learned here -and I’m a retired family doc!

    Where do you live? Folks here may be able to guide you to good resources in your area.
     
  6. Riplip

    Riplip Member

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    I am from NH and I'm 39 with 2 young girls that I am trying to keep up with in multiple sports. As for the AV's I tried my civilian family doctor and my VA PCP and they are not willing to help. Luckily I was able to talk the VA ENT into it for the last 8 or so months. Now the top area specialists say its a waste of time all the other doctors are following suit. Its tough because I'm a safety manager for a construction company and not being able to communicate well makes it difficult. I came here straight from the military 19 years ago so they work with me as much as possible. If it gets too bad and I risk losing my job I will be lost. I'm just trying to hang on. The stress is enough to put you over the edge sometimes. I'm exhausted by the time I get home from work but I guess its life. I'm dealing with it. Has anyone just gotten better eventually from this? I heard of a burn out stage but not much talk of it. Honestly I wish they found something in a couple of the MRI's because at least I would know what I was fighting and why.
     
  7. Riplip

    Riplip Member

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    The Dr. at Mass Eye and Ear talked about all those procedures but didn't recommend any at the time. He only wanted me to do the CI right away.
     
  8. AnneT

    AnneT Well-Known Member

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    I’ve had it for 12 years. The longest I went without vertigo was 3 years- thought I’d ditched the beast by leaving a stressful job.

    I’m hoping to look into some medical papers to find out the odds of it just stopping, what percentage of us respond to medical treatment, and percentage that go on to surgery etc. But I’m kind of too anxious and brain foggy at the moment. But if/when I get to it I will post anything useful.
     
  9. Clare

    Clare Active Member

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    John, I think getting a CI makes a lot of sense in your position, and could improve your quality of life and ability to work. I hope you can do some background research on specialists in the surgery to find someone you're comfortable with. From what I've read, it's good to get a CI sooner rather than wait for word recognition ability to deteriorate further.

    I found ginger chews such as Jin-Jins helpful with nausea. You can find them at Asian grocery stores, sometimes at Chinese restaurants, or on Amazon. Ginger ale has been helpful, too. Ginger in any form is good against nausea.

    Because of the random nature of vertigo attacks and remissions, the efficacy of Meniere's treatments is difficult to study. My specialist absolutely refused to consider antiviral treatment and gave me the same line as you got. Soon after, I ended up getting a laby with BAHA implant at Mayo when the condition became utterly disabling, and that restored my life. But things are more complicated with both vestibular systems involved.

    I hope you are able to surround yourself with a good medical team and get some relief.
     
  10. redwing1951

    redwing1951 Well-Known Member

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    John I totally agree with Clare. A laby with a CI will give you your life back. I also live in NH and I see Dr. Rauch at Mass Eye and Ear. I would urge you to make an appointment with him for an evaluation of your current situation. I will caution you that he is not a believer in AV. It seems to me you might be ready to discuss the surgical route. I wish you the best in beating this dreadful condition.
     
  11. Riplip

    Riplip Member

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    I believe Dr. Rauch and Deventicia work in the same Dept. so its really not worth me switching if he doesn't believe in AV's as well. If I do go the CI route then I'll probably transfer up to Dartmouth because getting to Mass Eye and Ear is such a pain and takes a whole day away. I need to do research on CI's because I am constantly outdoors, swimming , sweating and if want to get back into marathon running because I don't need to talk to anyone while doing that. Just put your head down and grind away. I don't know if these things can get wet or dirty. Lots to think about and research.
     
  12. redwing1951

    redwing1951 Well-Known Member

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    I can appreciate what you are saying. I was a tri-athelet before vertigo took over my life. After my laby I was able to return to Swim Bike Run. I am so thankful.
    I am pretty sure you can swim after having a CI. You probably would have to remove the external instrument same as a hearing aid, but your internal part should be fine. Also I believe they have something you can wear over the external piece. Good for you to research and gather as much information as you can.
     

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