Meniere's Desease, PKD, and Wegener's

[sbryan1]

Has anyone else with Wegener's been diagnosed with Menieres Desease, an inflammation and fluid buildup in the inner ear that causes vertigo and nausea? Today after a visit to the ENT I was diagnosed with this. It's incurable like everything else in my life. I feel like I've hit the unlucky trifecta of deseases. Polycystic Kidney Decease (2000) Wegner's (2014) and now Menieres. Feeling used up! Thoughts anyone?

[Middlesista]

In 2013 before I was dx with GPA lost my hearing in one ear and had severe vertigo - my inflammatory markers had been high for many years but a connection with GPA was never made until last year when I had vision issues

If you are still having vertigo - vestibular training is helpful. Not sure if it is effective with Menieres as it does not treat a specific disease but rather the symptom of vertigo r/t realigning the small crystals in the inner ear.

[mishb]

I was diagnosed with Meniere's when I was in my 20's. I was diagnosed with WG in my 40's
My husband also has Meniere's (self diagnosed but the same symptoms as me) but he does not have WG or any other AI condition.

Unfortunately there is no cure for it

[annekat]

I have had troubling bouts with vertigo over periods of time and Menieres has been been suggested but not diagnosed. I found that the meds given for the vertigo, while relieving it, could also perpetuate it and I would need greater amounts for effectiveness. What ended up helping immensely was quitting coffee for awhile, which reduced the number of attacks to zero and enabled me to lose the dependency on the meds. I still keep the meds on hand and use them preventatively if I feel at all dizzy. And I drink black tea every day and some coffee, too, with caution. Every case is different, but quitting caffeine entirely for at least a couple weeks broke the cycle for me and I haven't had an attack for several months, after having at least a mild one nearly every day. I can't assume I'm out of the woods, though, so I'm careful with all caffeine, including chocolate, and try to stay hydrated and get plenty of rest.


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[drz]

I think my problems with deafness and poor balance and vertigo came from damage in inner ear cause by a granuloma or the vasculitis damage to nerves or organs in that area. For me I found vestibular rehab was very helpful. Before that any time I turned my head quickly from side to side the world would keep spinning so I couldn't drive a car safely and even walking a fairly straight line was impossible. I still can't walk a straight line but other wise have adapted to the limitations in my balance. Although I tend to fall over if I close my eyes. Neuropathy also compounds my balance problems and most Weggies don't have that symptom but many of us do.

[sbryan1]

Thank you all who responded. I had been told a few years ago (before GPA) that I might have Menier's and to watch sodium intake. Because I have never had a high sodium intake (PKD), I thought the doctor was nuts. So I appreciate all the Input and @annekat your suggestion of caffeine has made a difference. I hate to give it up but the vertigo is terrible. More tests to come to be sure but I've had a few days of relief. Thanks again.

[annekat]

Thank you all who responded. I had been told a few years ago (before GPA) that I might have Menier's and to watch sodium intake. Because I have never had a high sodium intake (PKD), I thought the doctor was nuts. So I appreciate all the Input and @annekat your suggestion of caffeine has made a difference. I hate to give it up but the vertigo is terrible. More tests to come to be sure but I've had a few days of relief. Thanks again.

I'm glad cutting back on caffeine has helped you. It might not for everyone with vertigo or Meniere's. It was definitely worth a try! I'm cutting back again but could do so a little more. I don't get much out of decaf coffee but there are some decent decaf black teas out there, my favorite being chai with a little honey and half and half. To me, the caffeine problem seems cumulative; just having a cup once in awhile or having a lot less may be OK, but having it regularly in amounts you've been used to will contribute to a build up of conditions in the inner ear that cause vertigo. I hated giving it up as a regular thing, too, but it was worth it to not have miserable vertigo. I can't claim to be out of the woods, but it sure helps to see a cause and effect relationship.