I can well relate to those dying sensations - however, a few years before my dizzy problems I suffered some sort of short lived anxiety disorder, which included bouts of derealisation which thankfully only lasted a couple of weeks, but when my dizzies started I just thought it was that comming back so I kept pushing myself thinking it would go away (I even went surfing in the first few days of it), so I wasn't greatly concerned at first, but over the space of a week or so it kept getting worse and affecting my balance more profoundly, until it reached a point where I couldn't walk anywhere without the world turning into a swirling mess - at that point I knew there was something else going on, luckily my GP at the time was on the ball and worked it out straight away, though that was little comfort to me.
Several months before the dizzies started I had started to work for myself (I write computer software so work from home), which in some ways was godsend, though it does mean that it's to avoid that essential stimulae of the outside world. I was living with my partner and she looked after me for the first few weeks (though it doesn't sound like I was severly affected as you), though 2 weeks in she had to go for her university graduation which mean't being on my own for a week - a major panic attack insued, luckily my parents came to stay for a few days, though by then my symptoms had gone mad (and anxiety had kicked in)... I've lived with partner ever since but we've decided to split up recently so I'm currently contemplating the implications of that - on a practical level it's no problem as financially I'm ok, and I do my fair share of the housework (my girlfriend doesn't cook at all), but as you imagine it's still quite an undertaking.
When I was at my worst the tiredness and sleepiness was a major issue, however now it's not a problem, so I'm sure it in your case it will pass relatively quickly. For me the anxiety side of this became a major issue, it's very common in people with vestibular problems, because the vestibular system has a direct link to the automic nervous system - the reason I mention it as if that happens to be an issue for you (it might not) then it's good to know that it's all part of this stuff.
It sounds like you making improvements already, which is great.. long may it continue...
I can well relate to those dying sensations - however, a few years before my dizzy problems I suffered some sort of short lived anxiety disorder, which included bouts of derealisation which thankfully only lasted a couple of weeks, but when my dizzies started I just thought it was that comming back so I kept pushing myself thinking it would go away (I even went surfing in the first few days of it), so I wasn't greatly concerned at first, but over the space of a week or so it kept getting worse and affecting my balance more profoundly, until it reached a point where I couldn't walk anywhere without the world turning into a swirling mess - at that point I knew there was something else going on, luckily my GP at the time was on the ball and worked it out straight away, though that was little comfort to me.
Billy what is your current "official" Dx? And what treatment are you on right now?
I can completely relate to what you are feeling. I am a very healthy and active 21 year old female. I was diagnosed with labyrinthitis in Feb '06 and it was like being slammed into a brick wall. My whole life was changed. I was bedridden for 3 weeks and lost 10 pounds because I couldn't eat due to the nausea. Being a working college student, this was very very difficult for me as I couldn't go to class, work, the gym, or go out with my friends - everything I was supposed to be doing for my age!! After about 6 weeks I had finally recovered enough to return to work and I began seeing someone for vestibular therapy. I worked on all kinds of balance exercises and I believe they helped me improve my condition. Granted, my right ear is permanently damaged by a virus, but my brain learned to compensate for my balance and coordination problems. It's now 7 months later and I am feeling about 90% recovered. I have gotten over the anxiety of living with such a frightening condition (the random dizzy spells, nausea, panic attacks, worry) and now I do all the things I used to with the occasional dizzy spell that only lasts a few seconds compared to roller coaster I have ridden for the past half year. FYI, the only test that revealed anything for me was the ENG and that is where they suspected the damage to my right inner ear. Your best bet is to stay as active as possible and don't let the bad side effects get you down. You can definitely beat it, and believe me, I did not think I would be standing on the other side of this! I thought I was going to go my whole life feeling dizzy and nauseated. Just try to live your life as your normally would, and most of all, relax, because the stress and anxiety only make it soooo much worse! Best of luck and stay positive!
Stargrave: I was dx'd a few years ago with a very vague "peripheral vestibular dysfunction", probably caused by a virus (ie vestibular neuronitis), but as time progresses (and symptoms change) that looks more and more unlikely..
I'm not really on any treatment - I've been plugging away at VRT exercises since 2000, though I'm slightly less enhusistatic about them now, but I find they help control some of the symptoms and as soon as I stop I start to go downhill (though sometimes I go downhill anyway)..
Last edited by billybignose; 10-12-2006 at 02:34 AM.
Stargrave: I was dx'd a few years ago with a very vague "peripheral vestibular dysfunction", probably caused by a virus (ie vestibular neuronitis), but as time progresses (and symptoms change) that looks more and more unlikely..
I'm not really on any treatment - I've been plugging away at VRT exercises since 2000, though I'm slightly less enhusistatic about them now, but I find they help control some of the symptoms and as soon as I stop I start to go downhill (though sometimes I go downhill anyway)..
I know what you mean... that's why I posted something about a difference between a relapse(new event, or unstable lesion) and decomp.
I'm reaching the two year mark(counting Nov 2004 as the first strike) with this problem, wich in terms of constant trouble it actually aggravated this year, with some new symptoms, wich are common vestibular issues, but were completely new stuff for me this year, so It do feels like something new, since it wasn't there before, for a whole year, even as my tests and Doctors opinion show otherwise(marking it like an "old" lesion)
And much like you, don't know if this is psychological or real, but I feel that VRT has helped, but I'm not able to "lock" permanently at 100% yet, and sometimes when I quit on it(VRT), I feel like all what has been learned(by my brain that is), begins to recede, and I get some symptoms again and can't endure some exercises again...
So even as I'm in an overall sense beetter, what is a bummer is not knowing how to "induce" that permanet 100% lock, since this comes and goes all by itself, making me feel sometimes just like a helpless spectator, and being from that 100% where I thnk "yeah! it was not big deal", to that 20-30% where I fell like dying, it's quite exhausting.
Don't get me wrong, I'm optimistic and confident, I was able to get a 100% even with a cold all over me, but I just want to get some certainty on this, even if this means that I've to get used to have this all my life(knock on wood anyway ), because not knowing what is actually happening, laves me practically clueless on what to do next.
Of course it all helps, healthy life, optimism, acitvity, VRT, and I encourage everyone to do this, specially on the first stages, and it might be the difference in the long term, but for me this has become, not only a time consiming, but a mind consuming drill, where much of my thinking resources are on a daily quest trying to find out anwers, and specially a cure.
And believe me that when I find it, I'll be delighted to share it with everyone.
My first ENG was 7 weeks into my vestibular problem. It showed bilateral vestibulopathy. I just had another ENG 3 months later. I now show very mild response bilaterally with the right ear being 4% greater than the left. I still have the oscillopsia. Sure wish that would go away. Still isn't safe for me to drive the freeways yet. The PT said he thought the oscillopsia would go away. Sure hope this is right. Over 18 weeks of this and I'm sick of it. All I do is either vestibular exercises or exercises for my other muscles which deteriorated (my right hip and right shoulder). Between exercising and going to PT, I do little else. I am able to grocery shop without too much trouble though. Is this going to get better??
Dizzybroad: Most labs consider anything less than a 20% difference to be within the normal range, partly because the equipment is so insensitive, but mostly because it's normal to have some variation between sides... Calorics once reduced, will stay permenantly reduced (unless the subject was in the throws of a spontaneous attack/had the "cerebellur clamp" mechanism in action)..
I truely believe the oscillopsia will go. I know for me when I was at my worst it was truly terrible, and it doesn't bother me at all now (except when my dizzies are really messed up - but as I've said before I'm not a "normal" case). Your brain will soon figure out how to make use of the vestibular signals you have, and the oscillopsia will go - I found gaze stabilisation exercises work really well, but I guess it's all how it fits in with your PT's other exercises..
I know it feels like 18 weeks is a long while, but it really isn't, infact it's still early days - thats not to say it's going to be months and months before you find relief, just that it's not unusual for things to go on that long infact it's quite common. I'm sure you are a lot better now than 18 weeks ago (if not feeling much better I bet you can at least do more) and it can take a long while, but I'm sure you will keep improving and improving. I know for me when I was at my worst it took 2-3 months before I felt any improvement at all, and then all of a sudden I felt a little better everyday, and within another month I was able to do most things (not symptom free, but it was such an improvement)..
Last edited by billybignose; 11-02-2006 at 04:15 AM.
Thanks for your support. I actually don't have anyone I else I can express my frustration with. I am really a very up person and have always felt happy and positive almost all of the time. Consequently, no one I know is used to listening to me complain or express my sadness over this. I just keep it to myself so I do appreciate "talking" to others who understand. Do you get tired of holding the rest of us up? I'll try to help others too when I get better. Actually, you are right. I am better. Beats the first 3 months of constant nausea and feeling that a good day was showering (with help), going downstairs and sitting on the couch to watch endless hours of mindless TV. Thanks...........
Yesterday my physical therapist told me that my insurance will only cover 2 more visits. I am so frightened to not go because it has made me so much better but I am still symptomatic. When I took 2 weeks off to go on a preplanned vacation, i went backwards. Was it hard for any of you to stop going to PT?
), because not knowing what is actually happening, laves me practically clueless on what to do next.
I'll try to help others too when I get better. Actually, you are right. I am better. Beats the first 3 months of constant nausea and feeling that a good day was showering (with help), going downstairs and sitting on the couch to watch endless hours of mindless TV. Thanks...........
