Hey everyone! New member here : ) I am a college student who's had Meniere's since I was 13 (starting with the unilateral hearing loss/tinnitus/fullness, followed by a more recent onset of vertigo and dizzy spells this past year). The hearing issue never bothered me much since I've had it so long, but this past year my vertigo spells feel like they have been getting exponentially worse. I started having them a year ago where I would get one once or twice a month for about 20 minutes, but they kept increasing until now I get daily, and often multi-day spells of dizziness. I'm still a sophomore in college and it's been having a pretty substantial impact on my ability to focus and do my schoolwork, as well as my mental health, so I was wondering if y'all might have any tips on what you do to deal with vertigo spells in the moment when they happen. Thanks and it's nice to meet y'all!
Crawfish, I've been worried about you ever since I read your post. I, too, began my journey with Meniere's when I was in college (I'm now almost 70 years old). What have your doctors done for you? Have they ruled out a tumor or something weird like an Arnold-Chiari malformation (like my sister had)? For starters, make sure you are on a low salt diet and severely limit your caffeine. Don't go all day without eating. Don't go on carnival rides. HA! Keep a diary of your condition. My main problem for most of my life has not been the dizzy spells, but distorted hearing and loss of hearing. But I know right now your main concern is to have a normal life without the dizzy spells. There are a lot of people on the forum who will give you advice about supplements and drugs. Prednisone never worked for me. Right now I'm on the JOH regimen talked about on this forum because I am close to losing all my hearing. I pray that you can get some help.
Hi Patricia! Thanks for checking in, it means a lot : ) I've unfortunately been between doctors for this recent uptick in vertigo - I originally had a pediatric ENT I went to for years, however since I aged out of the practice during Covid, I did not realize until yesterday actually that I can't go back to his practice. So, currently trying to find a new ENT/vestibular specialist :/ My previous ENT tried prednisone (didn't work, at least for the hearing loss) and possibly other treatments though I do not remember the specifics since I was pretty young. I did get an MRI done and everything came back normal, so they ruled out a tumor or malformation at the time. Thank you for the suggestions though! I've been on a pseudo-low-salt diet (ie. low salt to the extent that a college diet/cafeteria allows it), but I will try to cut more of that out of my diet, and try to limit the near-daily chai lattes haha. In any case, thank you for the advice and I hope you are doing well!
Hi Crawfish. May I ask, just out of curiosity, have you had many antibiotics in the past? For acne, for other health issues as a child (recurring ear infections, etc.)?
I did used to have recurring ear infections in the past, but I never took any particularly strong antibiotics or the type that usually have hearing loss as a side effect. Plus, the hearing loss initially set on when I was a teenager while I had ear infections much younger.
Ree Research labryinthectomy and talk to a surgeon. I lived with Ménière’s for 8 years and it was hell, a labryinthectomy gave me my life back. I am now living 100% normal life. I only wish I would of done it sooner.