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I experienced severe dibilitating vertigo starting at the age of 4. I had seen more doctors, been in more hosptials, and more ambulance rides than most people in a lifetime. I have had 2 surgeries that failed, the last one at 30 years old. I am almost 57 years old now. The vertigo would start with an "unsteady, lightheaded" feeling, and progress to severe dizziness within days. Usually peaking at its worst by the 3rd or 4th day when I could barely move without severe dizziness. Sometimes I could only take shallow breaths as breathing deeply would make make dizzy. After the 4th day or so, I would make the road back to normalcy...In all I would be unable to live my life for about 9 or 10 days each time. It was like clockwork and I could go about 90 to maybe 110 days before each vertigo "10 day" episode would occur again. This went on from the age of 4 until I was 41 years old. At 41 I suddenly stopped getting these horrific dizzy events. I do not know why that happened, all I know is that for my whole life, I could never hold on to a job for any lenghth of time due to this vertigo..no one wants someone who is out of commision every 90 or so days for 10 days of work no matter how great a worker/or person you are. I did not qualify for disability as I showed a solid work history...a whole slew of jobs, but work none the less. I promise you, I certainly have seen more than my share of ambulances, specialists and surgeons. The 15 years of freedom from the hell of dizziness have been a God send for me. I do not know why it stopped, only that I have never taken it for granted that I was healthy from that hell. Now suddenly, I find myself in the throws of dizziness again. I am on the 2nd day, and can type, but am very, very lightheaded and most certainly can see it coming on again for the first time in over 15 years. Why? Why is this happening again? I have had tons of medications that didn't work, 2 surgeries..by the same doctor...who then after they failed, said I was crazy..(really? 2 surgeries to then say, Oh, you are imagining this?) The surgery was suppose to be a graft in the middle ear to equalize the fluid that he said was tearing and leaking causing the mild to severe dizziness over a 10 day period...sounded plausible. And I desperately wanted to be cured of this hell. After those surgeries and many, many prescribed medications that failed to help, I finally decided to live my life the best I could in between attacks. I have had so, so many jobs that I have ultimately lost. Again, I was so grateful to have 15 years of pure heaven not being sick. But, now, now it is back. I have searched everywhere looking for someone who is like me, or had experiences like myself with no luck. Is there anyone here who lives with this?
Posted on 07/02/12, 11:48 am |
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hi, i ve been living with vertigo since last christmas..the first 2 months were HELL. the constant dizziness 24/7 the people in the ER start knowing me by name, even some of them think that i am just imagining things. i feel a little bit better now but not normal enough to have a normal life. to quote someone in this forum, its like a combination of being in a rocking swaying boat and a dream like weird feeling of being not really out there...
wish you the best i am sure it takes a lot of courage to go through what you going through during all these years 
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Thankyou for your kind words. I just don't want to go thru this again. I haven't been able to find anyone on any message board with the severity/longevity of this condition. Strange as it seems, focusing on reading sometimes helps me to avoid dizziness....not sure why. I totally sympathize with anyone with this awful condition. Thankyou!
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I will be 28 yrs old next month. I've had vertigo ever since I can remember my parents said that they knew something wasn't quite right b/c of little things that babies would normally love, but I'd start crying if they tried, but they didn't know it was really bad til I could talk & try to tell them what was wrong. Ppl (including drs) use to tell me it was all in my head. I mean come on this isn't something you would wish on your worst enemy. The doctors would think they had it figured out then when it turned out that they were wrong they would tell my parents that it was in my head & there was nothing they could do. I lived my life to the best of my ability until I was finally diagnosed w/vertigo when I was 20. I don't know how many test I've had trying to find out the cause, but thankfully i haven't had to go the hospital b/c of them. I've had a hard life, but thankfully had a good family & friends to help me through it even tho they had no idea what I'm going through. I even had a good job where I could do it w/my eyes closed thankfully b/c it caused me to go through it frequent & my boss worked w/me & knew I couldn't find another understanding boss like that haven't been able to find a job since she had to let me go b/c she was closing the business. After about 2 yrs it seemed to get worse where I stopped driving b/c they were so frequent that I became fearful to drive & now I barely see my friends b/c I never know what to expect when I finally decide to go out. For the past few yrs they do seem to have gotten worse b/c it seems I don't have a vertigo free day I actually like the days I have a slight one b/c then I can function & not be bored of laying in bed not being able to move which seems to be once a wk at least lately then I'm in bed for another two days trying to get out of the fog it left & then by the time I'm out of bed I get maybe 2 or 3 days & then the cycle starts all over again. I did have a couple of ppl tell me they respect me for going through them b/c they became aware what I have to go through after they had one. One was my sister-in-law so now she keeps a ear out if she hears about someone that hasthem & what they do & she tries to get my brother to understand when it starts to agravate him which seems to be working for our relationsip b/c he's better when we go out if I end up in a bad place. It's so frustrating that there's not a cure for it b/c I really would like a life before I don't have one to live.
I actually didn't think there was anyone else that's had it since they were little. I really hope it gets better for you. ~God Bless~
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I really appreciate your response. It's such a difficult illness to live with, isn't it? It dictates your life. Having been free of this for 15 years and then to have it invade my life again has been hell. I sit in limbo, literally, since walking across the room or moving suddenly is not much fun. I am worried about my job, and worried that this will never end. Unlike some of you, it seems that my problems with dizziness (when it was chronic) did abate for 3 months or so at a time. But now it seems to be coming back. And of course there is really no way to explain being out of work. It's not like saying, hey I have a cold, I'll be out of work for 10 days or so....sigh. It's just so depressing to think I will have to deal with all of this again. I sit in my chair and pray it will suddenly disappear as quickly as it came back. I am so sorry that you suffer with this as well. And you are so right, no one would wish this on their worst enemy. All we all want to do is live a normal life, don't we?
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It's not fun, and I sit here typing this "so, so" being able to cope with it. I lost my full time job, and my social life. I, like everyone else hopes there's an answer to this madness. People want me to get a job. They see me on my "good days" and think I can manage. I tell them the days they don't see me are the days that are the bad ones, and those are more frequent then the good days. How can I work? I'm with you, and I feel your pain. May God bless us all during this tough time.
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aspireman, How long have you been dealing with this? I am grateful to have found this forum. I am 57, for so long I lived with this alone with no internet, no way of knowing just how many of us were out there just trying to survive. When did this begin for you?
Shelli
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Off and on throughout my life. I've always felt not grounded to the earth. It started when I was about 11. It wasn't severe then, just an hour or two (wish I had those days now). During my teen years it kicked in hard. I remember one time I had gotten back from a long bike ride. I knew I didn't feel right while riding, but once I got home it really kicked in. Back then I didn't know how to deal with it. It scared me a lot (still does). Thankfully it only lasted, like I said a hour or two. Twenties I'd wake up with severe vertigo and weakness. I'd be out most of the day, and couldn't function to well. I'd usually be back to normal within a day or so. Most recently (last year) I had a tooth pulled and was put on some antibiotic that screwed me up. Add a bunch of family stress on top of that and you have a big mess. I haven't been able to shake it off. I have my "so, so" days, but each day has it's struggles.
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apologies if this has been repeated, sounds like you have menieres. since you go through those long gaps between the episodes. wishing you sanity and happiness.
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I always thought that with Meniere's there is hearing loss...is that true? And may I ask if you have a diagnosis? Thanks in advance. Shelli
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from what i read most do have hearing loss some don't
I have MAV
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