NEW! Meniere’s Disease Study!

Good morning, everyone!  Rather than share a recipe today, I’m here to offer some potentially exciting news for those of you who also suffer from Meniere’s Disease.

As you know, I’ve had tremendous success in controlling my Meniere’s symptoms through diet alone.  After living low-sodium the past decade, and the last two years vegan as well, I’ve reached a fairly steady equilibrium.  But when dietary changes aren’t enough, particularly to combat the incapacitating vertigo of Meniere’s, then what?

I received an intriguing email yesterday from a woman who works for a company called Access to Patients. This company is currently recruiting for a research study for Meniere’s Disease.  Although I do not myself intend to participate, I know that this might be helpful to others.  So I want to get the word out!

Here is the information about the study.

The sponsor is Otonomy.  They are a company based in California. Otonomy’s co-founder, Jay Lichter, discovered he had Ménière’s disease as he was driving along the coast and had his first vertigo attack.  He went to his doctor and after a series of tests was diagnosed with Ménière’s.  He asked his doctor if there were effective medicines available to reduce the severity and frequency of vertigo attacks.  After the answer was no, he basically set out to develop one.

This Meniere’s study tests the effectiveness and safety of the investigational drug, OTO-104, at reducing the number of and severity of vertigo attacks.  It’s a steroid administered via syringe in the ear.  The medicine starts out as a liquid and once inside the ear turns to a gel that (for lack of better term) pretty much stays put.  Current steroid injections are liquids that run out of the ear very quickly, so can be less than effective.

If you feel this would be helpful, check out the Meniere’s Disease Study website.  The clinical trials are being conducted across the country and it’s likely there’s a location within driving distance.  You can also keep up with the study via social media: Facebook, Twitter, and Pinterest.

Wishing you health and happiness always, Christy

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13 Responses to NEW! Meniere’s Disease Study!

  1. Kristin says:

    This looks interesting! I’m definitely going to pass it along to my dad (he’s the Meniere’s sufferer in our family). Who knows when something will actually stick and turn out to be a cure (I can only hope!).

  2. Mike Scheeffer says:

    thanks for the info and for the recipes. I have bilateral Meniere’s. Being a mid-western carnivore is difficult on a low sodium diet so I review your recipes a lot to see what I can adapt to my carnivorous ways. I know you’ve handled the vertigo episodes with diet but how are you doing with the tinnitus? Just curious.

    Thanks again for your efforts and time with this website to help those you don’t know. It is appreciated!!!

    • Christy says:

      Hi Mike! You’re so welcome. It’s always so wonderful hearing the site is helpful.

      As for my symptoms.. I have not had a vertigo attack since last year, but do still contend with dizziness, usually related to weather changes. I don’t have tinnitus all the time, thankfully. It’s really episodic, and comes and goes without warning – just like the rest of the symptoms (fullness, deafness, etc) I have and continue to experience a strange sensation where my ear seems to “shut off” – typically for a matter of seconds – and then my hearing turns back on again. This has happened many times in both ears, both my “good” and “bad” ear, but never simultaneously. It is very weird and a little frightening. But it passes quickly. I’ve never deduced whether this is a symptom of Meniere’s or just something unique to me.

      Anyway, hope this info helps! Wishing you the very best.

  3. Phyllis says:

    I tried to get into the study, but they turned me down because I have CLL (Chronic Lymphocytic Leukemia) although it is not active. I was disappointed, but I hope they get some great results from it.
    I never used much salt, so cutting back on it seems to have made no difference for me. But I think giving up any wine at all may have made some change. I already tried caffeine – no result, chocolate – no result, sugar – no result…so perhaps wine is the thing. Best of luck to those who try the study. Keeping my fingers crossed.

    • Christy says:

      Hi Phyllis! So sorry to hear you’re ineligible for the study. But if the drug passes successfully through the clinical trials, there’s hope that it could help then. Right?! Thinking positively! Best wishes to you.

  4. Hi Christy,
    I just found your blog because of this post. I’m another food blogger, recently diagnosed with Meniere’s and migraines and have been seeing good results with the low-sodium diet.

    I am happy to know about and support your blog and will share this post to help spread the word about the study. All my recipes that are low-sodium (140 mg or less per serving) are tagged in my recipe index, so people looking for additional recipes might want to check those out. From now on, all my recipes will be low-sodium.

    Best,
    Stephanie Weaver
    The Recipe Renovator

    • Christy says:

      Hi Stephanie! Lovely to hear from and meet you too! Good luck with your transition to low-so living. Sounds like you’re a pro in the kitchen. I look forward to enjoying your recipes! Thanks for sharing the study. I really hope it proves helpful to many. Take care and all the best to you!

  5. Katie says:

    Great post! I will forward to my mom who suffers from Meniere’s. I am currently running a half marathon in every state plus D.C. for my non-profit run because to raise money for Meniere’s so this is great!

    • Christy says:

      Wow, Katie!! What a wonderful thing you’re doing. Wishing you the very best of luck! And thanks for sharing the link with your mom. Really hope it helps.

  6. Karen Schaefer says:

    I have had ear ringing for years and it gets better off and on but never gone. I recently, last fall, had a debilitating attack of vertigo. I have had Epley manuevers x 3 with temp. relief one time. I am better as I don’t vomit every time I move. I still can’t look up or bend over without getting dizzy and nausea with occ. vomiting. I would be very interested in this study. I hope it works out to be a go!

  7. Natalie says:

    Wow–that is SO great! I hope they come up with a solution–that sounds really awful. Hopefully this study will yield positive life changing results for everyone.

    This isn’t quite the appropriate place– but, I hope you don’t mind too much. I was wondering if you had a recipe for pesto? I was looking in your index, and where the link to pesto is (in pesto stuffed shells), it’s gone. :( I recently discovered I like pesto, so thought I might try to make some low-sodium pesto.

    Also, concerning cheeses and things like that, I was wondering if you think the trade-off of ‘more sodium’ in ‘fat free’ and ‘low fat’ items is worth it. I noticed your recipes call for lowfat or non fat things a lot of times, but when I check the sodium content, these contain more sodium. Is the benefit of lower fat items better than saving a few mgs of sodium? (I hope this makes sense). Also, I’ve noticed this with almond milk vs. regular milk–almond milk contains more sodium, but I was wondering if it would be worth it?

    Thanks for all the fabulous recipes, and I’ll be looking forward to hearing updates on this study that I hope changes a lot of lives. :)

    Natalie

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