Hi Everyone, I use to be a member years ago, but I guess it was too long and I had to register again. I've had this monster for 29 years and I'm Bi-Lateral. I tried all different medications, the Menitt Device, Sac Decompression with mastoid shunt, and eventually Vestibular Nerve Section in 2004. I've been pretty good for the last 13 years. I've had flare ups but nothing that a round of steroids couldn't get rid of. But for the last year things have changed and it's getting worse, to the point that I'm in bed again and nauseous most of the time. The only medication I take for it is Meclizine, however I've been taking that for over 20 years so it more than likely doesn't work anymore. I'm really scared that this beast has come out of remission and I don't know what to do. My options are limited since I'm Bi-Lateral and already had the Vestibular Nerve Section. I don't know anything new has come out, I don't know if this is going to be my new life. In addition I also have Osteoporosis, Osteoarthritis, Fibromyalgia, Disc Degeneration between my C4 and C5 and C5 and C6, Bulimia, Depression and Anxiety Disorder. Any help or suggestions would be greatly appreciated. Debbie
Fix the psychological stuff. I promise it can be done. I was anorexic. 120 lbs at 6’1. As for new advances, not really. I’m trying to fix that by galvanizing the community to push for research — read my other posts. MVI vestibular implant is probably our best future bet for bilateral. You can look up what Stephen Spring is talking about in Australia, too. Though this forum dislikes discussing Spring, so I won’t go into anymore detail.
Oh, since you haven’t tried it. Some people recommend JOH. Or antivirals. Or immunotherapy, maybe, but you didn’t hear it from me. You could get a second laby/VNS but it doesn’t exactly fix you. Lots of problems afterward. Bulldogs posts would be a good read as he’s had a double laby. He doesn’t regret it.
Hey Debbie, That name sounds familiar. I am so sorry that the beast has reared it's ugly head again.To say it sucks is a vast understatement.I too have been off this board for a long time but it's back trying to get me too. You have a lot going on.I do hope that you have family and a good support system. What are your doctors saying? Just remember that it got better before for 13 years maybe this is a very rough patch in the road and it's going to go into remission again. Keep us posted.
Debbie, Just want to add that maybe you could look into CBE products.A lot of people are getting help with lots of things. It the extract from Marijuana or Hemp. It does not make you high but it might be worth a try.There are oils,vapes,and edibles and perfectly legal.I don't know that much about it but it might be worth trying.Good luck!
I'm sorry. I didn't notice till rereading this how insensitive I came-off. Wasn't intended. If you elect to do a double-laby then you won't experience vertigo, but the visual effects and internal sensations are very strange. I don't know what they're like, personally. I haven't really seen anyone here describe them in detail. However, a few people have done it and I do not believe any expressed regret. If it comes to that. I hope it doesn't need to.
I'm sorry. I didn't notice till rereading this how insensitive I came-off. Wasn't intended. If you elect to do a double-laby then you won't experience vertigo, but the visual effects and internal sensations are very strange. I don't know what they're like, personally. I haven't really seen anyone here describe them in detail. However, a few people have done it and I do not believe any expressed regret. If it comes to that. I hope it doesn't need to.
Debbie, my doctor prescribed Zofran (Ondansetron HCL) 4mg for nausea and/or vomiting. It helps, but has a side effect of constipation which can be helped with an OTC gentle laxative or by increasing fiber in your diet. I was told to take it along with a 5mg valium at first sign of vertigo. It's effective for me as long as I can take it quickly enough that it will stay down. I have had left-side meniere's for 17 years, but last week my ENT expressed concern that there may be right side involvement now. I'm getting VNG and rotary chair tests tomorrow. I can understand the fear that comes when you feel you've finally figured out how to live with the incapacitating symptoms -- maybe even got some confidence back -- and along it comes and stares you in the face again. After a flare-up of vertigo a year ago, I was left with ongoing imbalance. My ENT prescribed vestibular therapy, and I was lucky to find a fantastic therapist. She helped me get back to doing what I wanted to do, and I'm so grateful for that. For 9 months afterward I had no vertigo, then it came back in January, worse than ever before. Today I started VT again with the same therapist -- lovely to see her again, though the circumstances could be better. This is a wordy way to say that maybe vestibular therapy could help you with the imbalance, too. You have to follow the simple exercises daily, but they don't take long and are well worth it in the long run as you regain capabilities. If your vestibular condition has declined, your brain needs to be taught how to function with the remaining balance parts, and that's what the vestibular therapy does. It's especially important for your safety since you have osteoporosis. Good luck, Debbie. I hope you'll keep in touch. I'm scared too, and it helps me feel stronger to know I'm not alone.