Hello. I started feeling dizzy aka woozy/disequilibrium symptoms around May 2014 and doctors called it anxiety. I developed tinnitus in my left ear and the doctors said it was just something that happens to lots of folks. Then in November 2014, my left ear felt full/plugged up and I lost my low frequency hearing and I was diagnosed with Meniere's Disease. Within a week of my diagnosis I had what I call my first "vertigo attack." I woke up at 5am and the room was spinning out of control... it lasted for 4 hours and I was bed ridden. My question is, will the daily dizziness/wooziness/disequilibrium ever go away? I ask because I am MISERABLE and scared. Some people seem to refer to episodic "attacks" and I am wondering if that is a "major vertigo attack" where you can't get out of bed or walk, or if they are talking about the dizziness/wooziness/disequilibrium that I feel every day. So here I am today, 47, almost deaf in one ear, dizzy every day, weak sick feeling mostly every day and stuck. Is this it? Is this the way it's going to be until it gets worse? I would like to hear from others to see what their experience is. I don't think I can't take this.
This is a warehouse full of information to help sort things out and to stabilize. Read Read Read and try JOH's regimen and Antivirals maybe. These two things have made me functional again although I did not have vertigo. Still some better days than others but light years ahead of where I've been in the last couple of years. One really has to be one's own advocate and healer since there isn'y a one-size-fits-all approach. Hang in!
For me, the major "attacks" are when the violent spinning starts and goes on and on. Horrible. A few thoughts: For the major vertigo attack - my doctor prescribed lorazapam 1mg tablet that I put under my tongues when the room is spinning round and round. For me, with that pill, it shortens my attack to usually under 2 hrs. Definitely a blessing. Meclizine - is available over the counter. Doesn't work for me for the major violent vertigo but when I was feeling off balance/dizzy (but not room spinning) it did help. Antivirals - work for a lot of people; believe the earlier you are able to start the more likely it will be to help as well as potentially reduce the long standing damage caused to the ear from the attacks. Good luck. This is a great place filled with people who understand.
Hi Nicmger. Thanks for your message. So, aside from the occasional "major vertigo attack"... do you feel dizzy/off each and every day, all day long?
No, I had a 4-6 wk'ish period in April that I was dizzy 24/7, makes me exhausted and sick to my stomach, noise hurt my ears more. It took me about 3 weeks suffering before I remembered the meclizine and gave it a try. Meclizine was what the doctor told me to take when I was first diagnosed but it did nothing for the major attacks so I kinda forgot about it. Typically everything comes in clusters for me, I will be better and then suddenly ear pressure is high again, ringing in the ear goes crazy, hearing plummets, wears me out, sounds hurt...and through all of that some days I have the vertigo attack. Sometimes I wake up to it (the worst)...and the other days in the cluster everything else and the back of the mind "waiting" for an attack.
Before I started on the antiviral treatment I felt exactly as you do. Yes, I had vertigo attacks that stayed with me for hours on end. They included vomiting, not being able to lift my head without spinning, crawling to the bathroom and just staying in there because I couldn't continue going back and forth. I'd lay in bed all day afterwards feeling like I had been hit by a truck. Crying, depressed,,and that just brought on more vertigo. On the days when I wasn't having vertigo attacks, I'd have the off-balance, bumping into things, reaching for something and not grasping it. Constantly wondering when the next vertigo attack would hit. I had sudden drop attacks, scary as hell. Couldn't drive, could barely go out to get the mail. Somehow being outside, outside my comfort zone, made it worse. Weather would affect my symptoms, still does sometimes. I needed quiet all the time. People would talk to me and I couldn't understand them. Then if I watched TV, I needed the volume up high. The tinnitus and the pressure were the least of it for me, it was there but that is something that is not debilitating, so I could cope with it. At first it was just my left ear, then I went bilateral. It wasn't until I came here, read threads, asked for advice, read people's trials and triumphs, that I decided to ask my Oto for antivirals. I presented my case and had printed things from here to back me up. Luckily for me, although he didn't generally do this for his Menieres patients, he did it for me. It's not an instant fix. It takes months and you'll go back and forth with setbacks. Eventually I leveled off and now am able to live a normal life. It doesn't work for everybody, but there has been a lot of success. The best part is that I caught it early enough that the hearing in my right ear is almost 100%, my left ear has had improvement and not gotten worse. My initial dosage was 400mg. 3X a day and that was for a year. Now I take 400mg. 2X a day as a maintenance dose. I have blood work don't twice a year and have not had any problems. I will say that if you read my other thread here, I have just come out of an "episode." However, that has not happened in a very long time. It was more of a dizziness and off-balance feeling than those wicked brutal vertigo attacks. It's hard to write this. I'm not sure why. I guess it's an accounting of what one goes through when diagnosed with any disease and then finding something that helps. This last week has made me appreciate that I am living a normal life.,at the same time it brought back memories of what life had turned into and the fear that I would be back there again. I hope this answers some of your questions and helps you to understand that others feel and have felt exactly as you are. Remember that. Also remember that being anxious is also a part of it but can and will exasperate your symptoms. Research here. Find a good Otolaryngologist. Print out pertinent information and hopefully get on the track to better health. Good Luck to you
So sorry you are going through this. It is awful. I am 47, too, though for me this started when I was 44. Due to some misdiagnoses it took quite a while to sort this all out, but I turned out to have hearing loss, tinnitus, and aural fullness from Meniere's and vertigo from MAV and BPPV. I think sometimes I get dizziness from all those things. The vertigo I was able to stop by doing the Epley Maneuver for the BPPV and identifying the migraine trigger (in my case eyestrain--I started noticing I tended to get vertigo after being at the computer...those 40-something changing eyes) and eliminating it (getting new glasses). I began taking anti-virals in August--first Acyclovir and later switched to Valacyclovir. That improved the tinnitus and fullness, and I got a good bit of my hearing back. It eliminated the lingering dizziness. That has been like a miracle to me. I'm still new to the anti-virals (AVs) so maybe I'll get more hearing back, but my guess is that I have some permanent damage. I sure wish I'd explored Meniere's and learned about the anti-virals sooner--then maybe I'd have more hearing back. So that is the thing that I would recommend that anyone new to this take a good look at early on. Very good wishes with your journey on this. You have found a great resource of information and support here.
The mvertigo forum is being closed soon. The gang have moved to a Facebook group called Vestibular Migraine Professional and the most relevant information will be condensed and posted there during this year. There is great support for those suffering from vestibular migraine, which causes daily dizziness with some vertigo.
Ron, I do have daily dizziness--and used to have the vertigo, and did lose most of my hearing in one ear. I had the 'shunt' surgery in 2012 and since then, no vertigo--but daily dizziness is my constant companion and it causes anxiety and depression. But, I've learned (and it has taken a long while) to deal with it, but I know how you feel. Some days are worse than others, and some days, you can just keep on keeping on. But--if you have vertigo--that needs addressing and you need to find a good Neuro-ent to do that! Some say the daily dizziness could be due to MAV. However, I've had a problem believing one can have it daily--since when I had migraines they were not daily. And, I don't have vertigo---just the awful head pressure/ and dizziness that makes you feel like you can barely hold your eyes open and you have trouble thinking/concentrating (often referred to here as 'brain fog'). It will ease at times, but not like one would like for it too for a good quality of life. I do hope you get the correct diagnosis and the help you need. This board is so good for moral support and good advise too.
Hang in there, Ron. My first vertigo attack lasted 2 days. Months of dizziness and nausea followed. Slowly I improved. Valium really helped for the nausea and dizzies and I tried to work the whole time. I think resting would have helped but you know how it is: need the money... Talk to doctors until you find one willing to listen. After many, I've learned that there is a difference. Wishing you all the best.
Ron: What you describe is similar to my experience. When my Menieres symptoms got fully up and running, a typical week for me was 2-3 vertigo episodes, separated by constant dizziness and nausea. Yep, it was miserable. I had about 3 months were it was hard to leave my house. As others have mentioned, there are options and things to try. You will find your way out of this and eventually feel better. It will not last forever. Best of luck.