Meniere's Disease

Outfielder16

Is there anyone in here that has Meniere's Disease?

I was diagnosed last August after having a tumor removed from my inner ear. It pretty much eradicated my endolymphatic sac and was pushed up against my brain. It was causing the most extreme vertigo I have ever experienced. I had a glorious six months being vertigo-free when I went down with it again. My doctor advised that I had Meniere's and thus began my journey on a low sodium diet. Most days I have mild vertigo - basically I get dizzy if I turn my head to fast or get up too fast, but when a full blown attack comes in - I'm down for at least a week.

My recommended daily allowance is 1,000mg. I was advised to give up caffeine and alcohol. I can live without alcohol, but I couldn't fully give up caffeine. I treat myself to one "full leaded" Coke a day and the rest of my beverages (coffee and dinner time soda) are caffeine free. I do not use salt substitute at all, but have found Penzy's offers a great salt free alternative when it comes to spices.

Hoping to find some online buddies as I navigate this sometimes arduous journey.

For the record - I am 47 years old, a full time legal assistant to three attorneys and a student, student working towards my paralegal degree and I'm a mom to one spoiled fur child. Been married to my college sweetheart for 22 years. I am also a roller derby skater which is challenging when you have vertigo. Been at that for 10 years and still trying to limp along.

GeoCharles

Yes. Mine came out of the blue, 16 years ago, at age 49. It was rough going for the first 7 or 8 years. Back then sodium had not been singled out as a major villain by my medical advisors, although it was included in a short list of sins, of which coffee and alcohol were near and dear.
The last 8 years have been much better due, I think, to minimizing sodium intake.
Like you, I still drink about 2 cups of coffee in the morning; and I did give up my post hockey beer .
The last 'big one' was 5 years ago. There were 5 down and outers, a few aftershocks ... I was in the fog zone for 3 1/2 mos.. I am just finding this section of Fitness Pal since I have just begun experiencing symptoms, early warning that a big one is imminent. I find FP the best tool to pay attention to my nutrition.
So Outfielder, I hope that your experience with Meniere's is improving. Roller Derby! Wow, I haven't heard of that for at least 45 years. Go get 'em!
I saw another thread title Low Sodium. A couple of things I would add to watch out for are baked products, packaged in particular, but home cooked too. Baking powder and baking soda are evil.

AnnWG

I was diagnosed with Meniere's August 2017. So far (11 months) I have been able to manage symptoms by low sodium - try to stay around 1200mg per day - no diuretic yet. Since low sodium no vertigo attacks but have not got rid of ringing in ear. Just FYI, I played roller hockey and roller derby in Columbus OH. I tried out and made the team but then withdrew as it was the practice schedules were too much for my work/family/life balance... I was about 51 at the time now 63 and still skate when I can. My biggest issue with Meniere's right now is that it has affected my running... I am half marathoner and 1 full marathon and the lack of sodium in my diet has really caused me to cramp up in races especially in the longer races - and a lot less energy...trying to up sodium on running days but not so much that puts me into an attack. Plus as mentioned, after attack you are usually down for several days...I don't want that if it can be avoided. Good Luck to you!

SwimMighty

I was diagnosed about a year ago, but suffering with symptoms way longer.
I sticking to 500-800mg sodium a day. Although this past week have crept up to 1000. And....no caffeine (you really need to just bite the bullet and give it up, sorry), no dairy (it’s a personal thing for me, just makes me worse), and mostly plant-based. I mostly don’t drink alcohol, but will treat myself to a glass of Sauvignon Blanc every once in a while. I just feel way better this way. I use MFP to track the sodium. Hydration is huge too, I track my water intake daily. And consistent sleep and stress management. I’m mostly vertigo-free now, but will be seeing a neurologist next week for Vestibular Migraines.

The book “Mind Over Meniere’s” is fantastic. He gives a ton of good advice on how to figure out your triggers, as well as how to get as healthy as you can. The healthier foundation you make, the better you can deal with the Meniere’s.

So sorry you’re dealing with this...😥 there is hope for all of us. We just have to keep trying to figure it out, advocate for ourselves, and support each other.

Add me, if you want. I can point you to a couple good Facebook groups too.

Wishing you all a spin-free day.💜