Dizziness & Vertigo Support Group

Hi Mikki,
I want to offer encouraging advice, but I guess I am in need of it too right now. So I would really like to talk with someone who can relate. I have suffered with BPPV for 5 years off and on now. But usually my episode comes and then dwindles away in a few days to a week. I am now 11 days into this episode and prior to this one I had one that lasted 11 days and it was gone. I had one week in between the two attacks although I am fairly certain what brought on the second one. I had taken a bath and got water in my bad ear and I did something no BPPV sufferer should ever do (especially so soon after getting over an episode) I turned my head over and shook to get the water out. Low and behold, two hours later here came the symptoms again. I cannot describe the frustration. So here I am ANOTHER 11 days into it and the worst part is that I have days when I think I'm getting better and the next morning I wake up and I'm worse! This is truly maddening and I know just what you are going through. I too am driving my husband nuts. Can't do anything with my kids. I ride horses with my daughter and she is frustrated as well that I can't participate and I am holding her back now.
You know, I think while you are experiencing this, really watch your head position. No more bending forward and over to grab things from the floor for a while. I had to learn this the hard way. At least until you are fully recovered and not at risk of relapse. Another VERY important point that I am now learning. The epley is NOT for everyone with BPPV. A couple of mornings ago I did the epley and it worked, I was ecstatic, but then that evening I felt it coming back. What I think happens sometimes is that the epley will move the offending crytals into the right location but at the same time it is knocking new ones into the canals which I believe is the reason some of us continue to get worse afterwards. I am one of those who if I am not completely healed from an episode and very prone to getting it again. So I am really watching my head position from now on and crossing my fingers that it will work. So often I believe that when it seems to never go away, what we are really experiencing is new crystals getting dislodged from over exertion, ect. I am doing my best at trying to hang in there. It is sometimes unbearable and I have cried a lot. But I think we have to be patient. Please feel free to write me and compare notes or just vent.
Tina

What I've learned over years of treatment is no one thing works for everyone. I have had episodes last more than a month with dizziness and vomiting so bad I had to have help standing and getting to the bathroom. I have tried several physical therapy techniques that have made me so sick I had to sit in their waiting room for hours before I could be taken home. In the end, I've learned not to manipulate my neck, to get a pillow that supports my neck when sleeping, no cold or hot air or water suddenly in the ears. When the slightest hint of an episode starts, I leave a light on at night during sleep so my brain can see my movement, never sleep on the side that is causing the problem, no sudden movements, and I take over the counter meclazine that is chewable and I can control the dose. Doctors have given me Valiam which did nothing. Eventually it goes away. If I let the inital start get too far, the episode lasts longer and is more severe. I've learned to treat with whatever works as soon as possible and try to not get upset, deal. I've made sure everyone at work knows and I wear a medic alert for it. My last throwing up episode was in a store when I bent over too fast and scared everyone around me. I realized I needed the medic alert so I didn't get treated as a drunk or such. I believe it is like any other chronic illness, learning to understand what works for you is key. It is impossible to will it away, but it does eventually calm down. Hope you can stay positive! Linda

Thanks Tina and Linda..It really does help just to have people who understand.. I ahve heard people say they get dizzy from fibro etc.. yes some get weak and their legs feel unbalanced but I would not wish this on any of them.This is absolutely,THE WORST FEELING.
I am up here at 3:30 because when I lay down i start spinning..going to try again soon though..
I like hearing what works..even if it may differ..For me I have already found out ( the hard way..not to bend over for ANYTHING, and to keep the cold wind out of my ears..antivert doesnt seem to do much,,the ativan does a little but it makes me tired and I dont like that ..
I guess i am just feeling a little frustrated because there is so much I need to do here and cant get done.
I guess I should just be glad I have reached the point of throwing up yet..!
hugs Micki

Hi Mikki,

Im Laura LBK2000, I've been suffering for almost 3 years now I will say that I have to agree with almost evertyone who has sent you a reply. You must find what can help you. For me its walking believe it or not. I have had times whern I have been very dizzy and I get out and go for a walk and it calms it down. I dont know why that is. 3 years ago if you would have asked me to take a walk I would have said ARE YOU CRAZY!! But now I walk almost every morning after I talk my son to school for at least 45 min. Sometimes I go with my neighbor or sometimes I go alone. Yes I feel dizzy sometimes when I walk but I try to push through it. The anivert doe shelp me try it. Alos, I do the eply at home to with my husband I do think it helps. And after the epley it can take up to 2 weeks for the symptons to stop. I also have allergies so I belive that everythingh is connected. FIGHT THIS THING DONT LET IT TAKE YOUR LIFE. I HATE IT TOO. But my family and my life is morte important and I will keep going. I have a 7 year old son and I fight for him. Please keep in touch I am here for you. KEEP YOUR HEAD UP! It will get better, you have to work at it.
Your new friend
LAURA, lbk 2000

Hi Laura,
Have you ever had the ENG done? I am suppose to tomorrow but I don't think I can go through with it while I am still so dizzy. I don't want to get worse and I'm sure it will do that to me. I am not convinced that whatever the diagnosis is that they can help me anyway. I also don't think they can get a definite diagnosis off those because there can be so many things at play. I too have suffered horribly from allergies and I think it is all connected. My dad has it too and he also had bad allergies. I am frustrated because yesterday I was doing alright and then this morning I am really dizzy. I have to do Christmas shopping and feel awful!!! How long does it take for you to feel better? Someone wave a magic wand please!!!

It all reads so familiar, I have had it for 2 years.....if it is very bad I go out with a cane, stops me falling over....I have no allergies but have migraine all the time. I had my gall bladder out a week ago and it has been quit bad since I came out of hospital. They have checked it's nothing to do with my iner ear which some cases seem to be, I was hoping it was. nothing much seems to work. Luckily I have no young kids, I feel bad for you who have.