Hi Donna. I was diagnosed with Meniere's about 7 years ago, and I've had Fibro for at least 8 years, probably more. I also had the lovely water in the ear squirt test, had a horrible panic attack, and made them stop. I had a bunch of other tests for Meniere's too, but none of them were nearly as horrible.
I do believe there is a connection. I have several illnesses that "no one knows what causes it," but I think they are all somehow autoimmune related.
I'm in a pretty bad fibro flare right now too, and I've been waking up in the middle of the night (strange) with vertigo. I have gotten to the point with my Meniere's that I am having more balance problems (due to nerve damage) than actual vertigo.
When my vertigo was at its worst (and I say that as if it is in the past, knock on wood), I was taking HCTZ (a diuretic), and Valium and Benadryl every night before bed. A lot of people just use Valium during an attack, but I found it helped to take it prophylactically at night. But, if you want to try Valium and Benadryl together, you should probably ask your doctor first. Technically, they aren't supposed to be taken together.
I did watch salt intake pretty closely at first, but it didn't seem to make much of a difference for me.
Another thing I do is try really hard to avoid visual triggers: striped wall paper, flashing lights, flickering candles, looking up (or down), long rows of bookshelves (weird, I know), etc. This has helped me a lot.
I hope you feel better soon. I know how miserable it can be.
Hugs - Austen
Thanks, Austen. I have valium for the Meniere's but I have discovered there is nothing that helps once the attack is raging. I took a valium yesterday and just slept through the whole nightmare. When diagnosed, they prescribed anti-vert, but was told to take it three times a day to prevent the attack. That's fine, if you have no life and are committed to sleeping all day and never want to drive again. Yeah...and let's not forget the hearing loss and the whistling in the ears. Hubby bought me one of those phones that is supposed to amplify sound but I still can't hear most conversations and have to keep telling people to repeat themselves a dozen times.
Sorry you suffer from this too...I hear there are two new treatments...antibiotic implant and something that involves drilling a hole through the mastoid bone and lacing a tube into the ear canal. Owwy!
Hi Susie...glad you joined in. I think I have heard of the shunt-thing and it sounds promising. At the moment, I don't have health insurance as we were dropped when moving out of state. I guess I have to wait three more years before I'm on Meidcare to have any kind of treatment! I hope I'm not totally deaf my then!
I looked through a kaliediscope(sp?) in a museum once and got the worst attack...right there, right then. I don't know why things like that trigger Meniere's as I was told is was fluid build up in the ears from eating salt, etc. I ate a amall piece of barbequed ham at a picnic and spent the next three days in bed...couldn't even move my eyes. Back when I was dx'd, it was called a syndrome and remained on the list of 'orpahn disorders' up until recently, which means research for a cure was just about nil. Just like fibro...is it real, or imaginary???!
hey Austen...mine is bi-lateral which I understand is very rare. At different points in my life, I have been so bad I have actually considered having my ear drums removed, thinking complete deafness would be better than spinning all the time. I was wondering if you can fly (on airplanes)? I can't...no way. When the plane rises and the cabin pressurizes, I feel like I'm falling into a pit. Then I start throwing up until we land. Dramamine and all motion sickness drugs are useless...doc says it has nothing to do with the motion...it's my ears and eyes not co-operating with each other. I have to sit in the front seat of a car, or see the horizon if in a boat. I'd love to be able to fly to visit grandchildren, etc. Once I got off a plane and was deaf. Maybe I have been misinformed, but I was told as the scilia(spelling...those little hairs that transmit sound) die off after every attack, the attacks will lessen because in essence, deafness is the cure. I haven't found that to be true.
It's a riddle within a riddle within a riddle! We have a friend who is an airline pilot and has Meniere's and swears the ginger root prevents his attacks. I know that has worked for me for motion sickness...maybe I'll start taking that everyday!
I have had some weird symptoms for yrs and as I look at this post I have started to wonder if I have Meniere's. I have never been in a plane, but bus rides are horrible (class trips w/ 25 children, and you're nauseous), boat rides w/ soon to be in-laws ( and you're in captain's bunk sick as a dog), amusement rides ( you don't want to hear the outcome of that adventure, trust me). I have to sit in front in car and yet that doesn't always help. I can't look at cross traffic as I sit at a light. I get so dizzy, I feel like I could pass out. Dappled sunlight makes me dizzy. The day I got married my two ears went out on me. I felt like I was in a tunnel under water. That sensation continued every day for the next 3 yrs. I get it once in awhile now. I have changes in sound in my ears. One ear will hear a sound, then it seems to fade to other ear. My left ear is my better ear, if a noise is on that side and you talk to me on my right side, I can't hear you well enough to hear the words, just that you spoke. The sound of the fridge seems so loud and it blots other sounds or talking. It makes it hard to hear on the phone.
I have had this for yrs., my DM for the past several yrs. When I tried to explain it to her yrs ago, she didn't 'get it', now she does. Her drs. have no idea what it is. It sounds weird, because so many ppl here have it, some drs. must have recognized it to dx it.
My balance is so off, if I turn my head, the room can spin. It's as if the room goes dark and I grab for something, anything to keep from falling. I have a terrible time in elevators, my balance and ears are so messed up, as it drops, so does my stomach. Due to my knees, I can't take the stairs, so I'm stuck w/ elevators. Escalators make me feel like I'm pitching forward.
Hope everyone is having a lovely Thanksgiving, little pain, good food and lots of great memories. God bless. Alice.
Hi Alice...don't know if you have Menieres or not...there are many inner ear conditions that cause dizziness. With Menieres, the sensation is sustained vertigo that can last hours or days. Ringing, buzzing and sometime a full feeling in the ear usually comes with it, along with nausea. There is a condition called Benign Positional Vertigo that has the same symptoms but it is only a fleeting sensation...like when you turn your head real fast, or lay down...the room spins for a moment or two. I have a very hard time driving when the sun is shining through trees that line the road, forming flashing slats of sunshine. I feel like I am standing under a disco ball.
Pretty sure you have something going on with your inner ear and maybe you should mention Menieres to an Ear Nose and Throat doc and see what he thinks.