Hello. I have been rocking with dizziness and plugged ear among other symptoms for 2 years now, I have gotten a diagnosis on superior canal dehiscence but went for a 3rd opinion yesterday…the Dr thinks I have MAV, my question is can this last for 2 years straight? also I usually feel okay while in motion but I soon as I stop and am still this rocking hits…does this sound like MAV??? Also have ear fullness, both ears, sound and light sensitive, among other things…is their hope to bring these symptoms under control??? Any and all advise welcome!!
thank you,
Sarah
Hi Sarah,
I’m sorry for what you are going through and can relate! I’m not MAV expert (was diagnosed with labyrinthitis but suspect it’s MAV). I also feel worse when I’m still and better when I am moving. I’m not sure what you mean by “rocking” as I have had that experience too, but that is not my constant dizzy feeling. What I experience when I am still is the shaking & shifting of stationary objects. I have had this for a little over 6 months and I assume it can last as long as you’ve had it as I’ve seen lots of people on this board and other places talking about having it for years. My right ear gets plugged & hurts and I also have sound/light sensitivity. (My right ear was diagnosed with a 28% “weakness” on a calorics test).
I wish I could help with some advice on how to heal, but as I mentioned I’m not an MAV expert. I hope others chime in to help you out with their experiences! I have only tried vestibular rehabilitation therapy (have been in therapy since March) and can say that it has helped tremendously! I am no where near 100% and still have my bad (and even very bad) days, but most days I can function pretty well. In the beginning I was basically bed ridden but not anymore. I am on week 5 of the “Heal your Headache” diet by Dr. Buchholz (he says migraine vertigo is caused by migraines) and unfortunately, I don’t think it’s helping. You’re supposed to give it 6-8 weeks and I may try a few more, but I just don’t see it helping.
Best of luck!!
Has anyone mentioned Mal de Debarquement Syndrome? You say you feel good in motion, but the rocking returns after you stop–hallmark feature of this disorder. You dont have to acquire MdDS from a motion experience; people like me got it spontaneously. That being said, I had strictly MAV symptoms for over a year before mdds symptoms, and most specialists agree there is a link between mdds and migraine. Alot of us on this forum most likely have both. I notice alot around here get on mav meds, diet, etc and it helps the spin attacks, visual aura, and headaches, but they still complain of constant rocking (mdds). Klonopin is best for “rockers,” regardless of where exactly the rocking comes from. Just thought I would ask because alot of drs dont have much knowledge of mdds.
i feel like i am rocking constantly back and forth when sitting and laying down, and nortriptyline helped this symptom probably 80-85%- rocking is much less noticeable. Klonopin does nothing for me.