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    Old 05-19-2005, 05:03 AM   #1
    dizzy_dave
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    Feeling Desperate

    Sorry for a desperate posting... but I am just feeling so desperatea about my constant dizziness. Just looked on the main information sticky here, and disequilibrium seems to sum up my constant dizziness and unsteadiness... although the fuzziness does too. I'm just really worried that it's something serious like a neurological disorder and the MRI missed it. How can it be that I can have felt like this for so long (over 5 years)?

    Right now I am working. Just went for lunch. I get the strangest visual symptoms where everything looks odd. (can't really describe it better). i get kind of anxious, the noise in the canteen gets louder, and i just feel terrible. am i going to feel like this for the rest of my life? i'm 30, been feeling like this since 25, it has stolen my youth basically. i hate it.

    i just feel so fuzzy, and so weird, so much of the time. what is it???

    Dave

     
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    Old 05-19-2005, 05:50 AM   #2
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    Re: Feeling Desperate

    Hi Dave

    I fully sympathise with how desperate you feel. I've had this thing for nearly 4 years now (started with BPPV) and I think that "weird" is the best way to describe how I feel most of the time! I also get really bad visual problems, and I know exactly what you mean about things looking odd - for me, it's not as if things look out of focus or anything, but sometimes they seem almost too "sharp" and although logically I know what I'm looking at, it's almost like my brain has problems with recognising the object or building or whatever or coping with perspective and distance. It's almost like I can't bear to keep looking at something, almost like my eyes "hurt" and I have to look away but everything around me provokes the same reaction. I know, it's almost impossible to describe and I don't think I'm doing a very good job of it here! This always happens if I have recently had a bad BPPV attack or if one is just starting, but it also happens at other times and my eyes just will not settle down. I just have to get home and rest for a while and it's not usually until the next day that my eyes are relatively normal again (well, as normal as they ever get). It doesn't take much to upset my vision and I can't seem to find any way of getting it to settle down once this happens, it just gets worse.

    I also have the problem of noises around me seeming to get louder when this is happening. I think a lot of that may be due to the anxiety, as I suffer from quite bad anxiety and stress due to this rotten head monster.

    I'm doing a VRT program given to me by a VRT specialist, which includes some visual VRT and I am hoping so much that it will help me. The constant disequilibrium/off-balance/dizziness/unsteadiness is bad enough but the visual symptoms are the biggest problem, especially as I work on a computer all day. We are going through our busiest time of the year at work and I am doing constant data entry, looking back and forth from the screen to paperwork and back again, so you can imagine what that does to my eyes. This VRT is supposed to help that, so fingers crossed!!!!

    I was 10 years older than you when the head monster first got me, it must be awful for you to be suffering this from such a young age. It's hard enough to cope with when you're older, let alone at an age when you should be able to get out and about and make the most of life.

    Don't worry too much about it maybe being a neurological disorder. I have had CT scans and MRIs too, but they have all come back clear. There is a definite link between the vestibular system and your vision, so it stands to reason that inner ear problems can play havoc with your eyes. I know that doesn't make it any easier to deal with, but at least maybe it will help to ease your mind that you have something really bad wrong with you. I know how frustrating it is when all this just keeps going on and on, I forget now what it's like to feel "normal" and I just hope and pray that one day I will be able to wake up, get out of of bed and not feel dizzy any more and be able to do the normal everyday things that other people do. Going to this VRT guy has helped, he was full of information about BPPV and VRT and is quite confident that the exercises will bring about a big improvement. I am only 7 weeks into it, so too early to tell yet whether I'm getting much better, especially as the exercises constantly provoke the dizziness etc! Mind you, most people seem to say VRT can take up to 12 months or so for a significant improvement, so I just have to stick with it and keep hoping.

    Do you know where your problem started from e.g. BPPV, labs, VN etc? It seems from what I've read here and elsewhere that the viral problems like labs and VN can cause nerve damage that will cause ongoing problems, and recurring attacks of BPPV can also make it extremely difficult for the vestibular system to compensate. That's where VRT can come in, to help with compensation and retrain the vestibular/balance system. I now have a hyper-sensitive vestibular system and it only takes very minor things to make my dizziness or visual problems worse, hopefully the exercises will help to "desensitise" it and make the various triggers less of a problem. Whether I will ever be fully well again, I don't know.

    Hang in there Dave, and remember there's always plenty of people here to give advice, support and even just to listen. It's one place where we can honestly say we know EXACTLY what you're going through.

    Best wishes

    Julie

     
    Old 05-19-2005, 06:36 AM   #3
    dizzy_dave
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    Re: Feeling Desperate

    Hi Julie,

    Thanks for your reply, I've found your posting really helpful... I'm constantly surprised by the 'shock of recognition' that I keep getting on these forum boards! It's good to know that you aren't alone.

    You wrote:
    "I also get really bad visual problems, and I know exactly what you mean about things looking odd - for me, it's not as if things look out of focus or anything, but sometimes they seem almost too "sharp" and although logically I know what I'm looking at, it's almost like my brain has problems with recognising the object or building or whatever or coping with perspective and distance. It's almost like I can't bear to keep looking at something, almost like my eyes "hurt" and I have to look away but everything around me provokes the same reaction."

    Yes! This is exactly what I get. It's not that I get blurred vision at all... but as you find, it's almost that things are painful to look at, like my brain is having problems dealing with the information. It's like a sensory overload I guess.

    I'm really interested in your visual VRT - what sort of exercises are you doing? I've been tested for BPPV, but it has come back negative. I have mid-low range hearing loss, and I have been diagnosed with peripheral vestibular disorder with failure to compensate... They have tried me on the low salt diet (didn't work and was a bugger to keep up!), VRT (Cawthorn Cooksey - again little result) etc. I'm not sure what caused mine - it sort of came on slowly around 1999/2000. It's all so depressing.

    Funnily enough, I'm fine on a bicycle (i cycle a lot), so balance in that sense isn't the main problem: it's more the problems with sensory overload, that lead to feelings of disequilbrium. all very odd.

    Anyway, I'd love to hear more about your visual VRT exercises. Thanks again.

    Best wishes,

    David

     
    Old 05-19-2005, 07:10 AM   #4
    spikey
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    Re: Feeling Desperate

    Hi Dave

    Strangely enough I'm fine on a bike as well, as far as balance goes, but I usually feel pretty "yuck" when I stop and get off, I think because of the visual stimulation of a movement that is much faster than walking. Still, I guess it's a form of visual VRT in a way! I wear glasses for distance (driving etc) and also wear them when cycling. I haven't biked much for ages as I was very sick earlier this year and my strength and energy have been a long time coming back - I had glandular fever a couple of years ago and have never really fully come back from that, any illnesses I get now really seem to drag me down.

    Before I went to the VRT guy, I was doing some exercises similar to the Cawthorne Cooksey as I'd decided to try some VRT myself but I wasn't doing them consistently so that's probably why it didn't do much good. The VRT guy said I needed something more "advanced" as I'd had these problems for such a long time. I currently do 3 different exercises: focussing on something 12-18 inches away (I usually use a playing card or a business card), turning my head back and forth as a quick but controlled movement, keeping the writing/pattern in focus for 30 seconds, then rest for 30 seconds and repeat, then rest for another 30 seconds. Then the same thing but moving my head up and down for 30 seconds, rest for 30 seconds and repeat. Then, holding the card in my right hand (I'm righthanded so the therapist said that was the best hand to use), you move the card one way and turn your head the other way but still keeping the writing/pattern in focus - you have to start with a fairly small movement and not too quickly otherwise you "lose" the object and the exercise is pointless. So, if you move the card to the left, turn your head to the right and vice versa, do this for 30 seconds, rest for 30 seconds, and repeat. The third one was the most difficult to get used to and is certainly the hardest on the eyes Not to mention the coordination to get the exercise right - and my hand/eye coordination has always sucked anyway The exercises are to be done a minimum of 4 times and maximum of 8 times a day, with at least an hour between sessions. He also said it is important during the rest periods not to move the head or eyes around, just keep your head still and the eyes focussed on the (non-moving) object. When you get used to the exercises, you can progress to standing on a cushion or foam pad while you're doing them.

    I will be doing these exercises for another 3 weeks before I see the VRT guy again for reassessment to see if these are working or whether I need more (or different) exercises.

    Hope the info helps!

    Julie

     
    Old 05-19-2005, 08:58 AM   #5
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    Re: Feeling Desperate

    I get visual symptoms too. My eyes get easily strained and feel "twitchy", like I am about to have vertigo, but don't! I get the feeling of things being too sharply in focus as well. I woke up in the middle of the night the other night and my eyes felt buggy and everything in the room looked kind of fuzzy and weird. I think that is why going to the store is hard too, cause it is really bright and with the long aisles and stuff, it bothers my eyes!! I worry too, Dave about having something worse that they have not found, but after you have had this for a while, esp. as long as you have, you would be alot sicker if it was a tumor or something, don't you agree? You probably would not be able to walk, let alone ride a bike. Fear and anxiety seem to be part of this "thing". Hang in there!

     
    Old 05-20-2005, 09:11 AM   #6
    dizzyblond
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    Smile Re: Feeling Desperate

    Hi all,
    I'm new to this forum - but, like Dave, have found incredible comfort, reassurance and information as I've read over these postings!!! Thank you all for sharing your experiences with those of us who have recently entered this incredible, dizzying nightmare!!!

    The symptoms of chronic disequilibrium have quite devastated my life, as all of you know from experience. That which started out an an occasional "off-balance" day about 7 months ago, has now turned into a completely debilitating conditon that leaves me unable to drive or even shop. (I have been amazed at how going into a grocery store (or any store, for that matter) has been almost impossible.)

    I have an ENG and MRI this coming week, but I realize, after reading so many posts, that I will probably come away from the ENT consult with no conclusive information - at least nothing that will help take these horrible symptoms away! (It sure is easy to think that something drastically wrong is taking place in your brain, isn't it? It seems that it would have to be something serious is order to make one feel this horrible!!!!)

    Dave, have you been referred to any sort of vestibular rehabilitation therapy? As Julie mentioned, the activity is important - so I am reading over and over. (In fact, I just read this post: "Yes the vestibular system DOES improve with use. Push that dizziness! Work through it! I got to a plateau after my first episode, which had me bedridden for 3 months. I loved to dance, but how? 5 years I didn't dance at all, too dizzy. After another bout, I got to a physical therapist about the time I reached my plateau again. She said push the dizziness, do these crazy excercises. IN 6 MONTHS I COULD DANCE AGAIN! Not just any dance, but Contra dance, that involves constant spinning. Within two years I was one of the better dancers at our club, if I do say so myself. Vestibular rehabilitation therapy works. It is hard, it is nauseating, and it is painful and you will hate it. Tough it out, excercise until it hurts or makes you really nauseaous, or you will plateau like I did.

    "Start with walking. Just walk. Then walk with head movements. Walk bouncing a tennis ball, or juggling it. Walk until you get pretty dizzy, even if it is only 30 seconds, keep pushing. I find that a few days of this shows some improvement. Get into a Physical Therapist, do their program. Vestibular rehabilitiation is what will get you up out of the bed and back into health!"
    )

    I found those thoughts to be very helpful and inspiring, since the last thing I want to do when my world is spinning and making me nauseated is move!!! Sitting or laying down is much more preferable to me, but I now see that I have to move through that... and stay moving! I think you'll notice this comment over and over, too, as you read through the postings. I start VRT this coming Monday, but found some simple exercises online, and started doing them already - just the simple ones, like the Cathorne Cooksey. I also heard that any activity that calls for coordinated hand-eye movement is also very good, like bowling or basketball. (I made my poor husband play ping-pong with me for an hour yesterday! )

    Well, I hate to welcome you to this miserable "club," but I know that you will find the encouragement, the support, and perhaps even more information on this health board - isn't is great to know that we really aren't going crazy?

    Looking forward to watching our progress... I've read enough here to say that, yes, we can do it!!!

    Best wishes for steadier ground for all of us!!!
    Robin

     
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