i’ve had meniere’s for 13 years and my oto now believes i probably have MAV as well. yesterday was a terrible day of dizziness and balance problems. bouncing off walls. back to using walls and hiking poles to get around. i know hiking poles sound absurd but it’s all i have around right now. :lol: so yesterday felt different than “meniere’s” and i thought ok, this is probably the MAV.
today i am still not well and have the “heavy head” feeling that i have always gotten with meniere’s. in the beginning the heavy head would always accompany a violent vertigo attack and if i moved my head in the slightest, i would get even more violently ill. my oto considers me to be in the late stages of meniere’s so i really don’t have that kind of vertigo anymore but i do still get that feeling in my head. almost as if my head is being pulled to the floor and it takes all my energy to keep it off the floor. now the nausea is coming along with it. i had a gentamicin injection back in may to help put an end to this constant battle for balance. now with MAV, i just don’t know who is running the show anymore.
in essence what i’m saying is today feels like a meniere’s thing. yesterday didn’t. i’m just curious if anyone with MAV has also experienced this feeling.
my head feels absolutely awful. it is very heavy, but the worst feeling is the spinning sensation inside my head. so difficult to explain, but it is quite debilitating.
Oh yes. Most definitely. I can’t remember what a normal head feels like. It’s exactly as you and Lisa describe. I’m NEVER not aware of my head.
I also have the heavy head feeling…but i also have this slightly squeezed tension in my head…it’s always there to some degree. Do you have that too? Medication helps to reduce the heavyness and tension on a daily basis but still don’t feel 100% back to normal. I hope someday i could say my head feels totally relaxed, totally clear of tension.
thanks everyone! so now i’m more confused than ever. is it MAV or meniere’s flaring up? or both at the same time? the thing that keeps coming back to me is that this is the same feeling i had after my gentamicin injection. i’ve put a call into my doctor’s office. doubt it will accomplish much for the time being but i figured it was worth it to try. if he wants to do another injection, then i want to go ahead and get it done. if he wants to try another MAV med or send me to a neuro, then i want to go ahead with that too. i really don’t want to want to the end of this month.
joseph-i don’t usually have the squeezing or tension unless i’m having a headache too. what medication are you on that helped with the heaviness?
brenda-that’s a good way to put it. i’m always aware of my own head. also, when my good ear is aching for no apparent reason, it’s like i can feel my eardrum. very weird feeling.
for a few years early in the piece, I had a feeling of being pulled to one side or the other, as well as a “continuous” sensation or perception of falling backward,or being pulled forward, I would be fighting against this feel all day until I couldnt any more, so I’d go to bed sleep it off.
The next day it would start all over again.
I8 years later , I only have the swirling sensation and rotation now, on a daily basis.
My mav and aura have morphed over the years , the meds have helped a bit.
oops yep forgot… I have had a heavy head at times.
all the best nicki.