Just curious if anyone in this group has Meniere's or other inner ear issues.

I've now had 12 infusions of IVIG on a 4 week schedule, and for the SCLS, it's worked wonders. I haven't felt this good in years.

On 7 occasions now, almost like clockwork, starting 5-7 days before my next scheduled infusion, I notice a change in my hearing that lasts a few days, which clears up, but that is usually followed by fairly bad veritgo, nausea, and vomiting, lasting 4-8 hours. This is a fairly typical Meniere's flair up. I had them for 25+ years, but it usually only happens once every 18-24 months before the IVIG.

My ENT doesn't have much advice, and neither does the hemotologist managing the IVIG treatments.

Meniere's is an autoimmune disease which is thought to cause fluid build-up / pressure in the inner ear. Together with the timing consistency, the attacks are probably related.  I know the primary concern is to prevent SCLS attacks so I have no plans to stop IVIG.

So just curious if anyone else in this group has had anything similar, and I will probably bring this up with either the specialist at the Mayo Clinic, or Dr Druey, or both.

Thanks! 

Kevin,

I think that it's worth noting autoimmune flares that co-occur with SCLS flares and/or IVIG treatment. Same regarding possible viral triggers.

The more anecdotal data available for case studies, the better the researchers can ponder the possible pathology and treatment.

Susan