Hello everyone. Nice to find this support group. My first bout of Meniere's happened at about the age of 20. I woke up with the room spinning, became violently ill, had to crawl for help, and there began the journey. I have been ill for months at a time and also had good years. The last few months it has come back again, no idea why, just there it is. I woke up one morning and the room was spinning again, couldnt stop it, the horrible nausea, the vomiting, the whole thing. Its been bad for a few months now. Not as bad as it could be, but some moderately bad days and some pretty bad days. My right ear is the bad one, although when I was first tested, many years ago, both ears were off the charts. I get fullness in my ear, a muscle spasm, severe violent vertigo and nausea/vomiting. I also walk to the right when its bad. I know I'm walking to the right, but it feels like I'm being pulled that way. I get a weird whirring sensation in the right side of my head. I know - strange. Decongestants help, yep, decongestants, but only if taken early enough, and that doesnt always work. Sleeping on my right side is disastrous. Tilting my head up or back is also disastrous. Dont even suggest boats or roller coasters. Its nice to be able to talk to people who have some sense of what this is about. It doesnt show so people cant understand it, or how debilitating it can be. I'm now 50, its been a long long road. Nice to "meet" all of you. I hope I can be helpful here.
Welcome (but wish you didn't have to be here!). My "bad ear" is the left one and I can't sleep on that side anymore because it seems to make things worse. Although the doctors dont agree there is a connection of course. Although in an attack, I typically walk to the right/opposite side of my bad ear. Have you tried anti-virals? Some people have found relief with them. Also, one I have an attack my doctor prescribed lorazapam that i put under my tongue and it helps to shorten the attack significantly. And the shorter the attack, the shorter time vomiting. I do have some periods where tilting my head up will cause spins but those periods I seem to be able to control through Nucca and stretching to keep my neck less tight. Take care
Hey DH, Nice to meet you, sorry it had to be here with this shit disease. I had a laby and it gave me my life back. Be good my friend Hang in there
Hey, Dizz- Only had it for 12 1/2 years, but got it hard, bad and bilateral. Was totally disabled almost immediately after my first massive attack. Did more experimental regiments than I want to remember. Was bedridden the first year, because when I would try to stand up, I would fall over and puke. A laby in my left ear allowed me to walk at least, without falling. Most of the time. But with the hyperacusis and eye issues, and tinnitus a jet plane would envy, my life was done. I have a great wife. She has stood with me all these years. And I have been a raging beast at times. We were so high in life, in a major city, and due to my illness, we disappeared. I think she lost even more than I did. But we have survived. We have three wonderful daughters. They understand my illness, maybe to excess. They are so solicitous it breaks my heart. In just the last two months, thanks to Dr. Jennifer Derebery at the House Ear Clinic in Los Angeles, I learned that my Menieres was even worse than I had thought. I basically have NO balance function left in either ear. Zero in my left, thanks to the laby. And less than 10% in my right, which she described as a labyrinthectomy without surgery. But I have some hope. Because my balance is gone totally, apparently I can no longer have those severe vertigo and drop attacks and nausea that plague so many of us with severe cases. I still can lose my balance of course. In our dark living room last week, when I was walking to turn off our gas fire place, I lost all sense of where I was. Up, down, left, right. I fell left (I have always fallen right), jammed a chair into a window frame, ended up carving a chunk out of my middle left finger and cracking a small window frame. But for the chair, I would have crashed the window and probably gashed myself and bled out, since I take a bunch of heart meds. I will take that. Having Menieres means managing your life, accepting to a degree your limitations. but pushing them. To make sure you do not give in. I was a nationally recognized lawyer in my prime. Now I help my wife write mystery and thriller novels. That keeps me going. I have a purpose still. Menieres has not defeated me, just reoriented me. I choose to view it that way. I choose life. Different, yes. But I refuse to believe it is less valuable. It matters to my wife and daughters, and because of them, it matters to me. Find some anchor in your life. Cling to it. Fight this damn illness. And persevere. And know that we here support you. Because we know where we are. We know who you are. We have both been there and are there. Best wishes for a better 2015!
Bam, once again BR is spot on. Nice post Recluse. BR----- sorry to hear about your fall, have you contemplated using an electric wheelchair or scooter to help with mobility and safety? Or even a walker around the house.
Great post. Brecluse Hi DH sorry to hear what you are going through. You should look into antivirals. Many of us get symptom relief. I've been vertigo free two years now due to them. Read through the database of the forums lots of good info there. Also pay attention to food triggers. Weather stress fatigue allergies all trigger symptoms. I have mm for most of my life. I never thought at this stage in my life I could be vertigo free but I am so far. Keep the fAith. Be your own advocate. Fingers crossed you find what works for you
Welcome, DH. Have you tried antivirals? Years of remission and reoccurrence as well as some of your symptoms sound a little like a virus. Many people here have gotten help from them, some even after as many year as you have suffereed. Good luck.
Hi DH, Only a couple of years for me while this thing is progressing being evaluated, treated, reevaluated. The JOH regimen and AV's have had the biggest impact so far. Back into life! Loads of good information here.