Discussions By Condition: Muscle conditions

Vestibular syndrom?

Posted In: Muscle conditions 3 Replies
  • Posted By: Jeneta
  • October 21, 2006
  • 06:24 PM


I am 37 years old and generally healthy (up until now). I have been working on a cruise ship for 11 years now and 2 months ago I felt dizzyness and nausia on a couple of occasions. Being on a ship I would have ignored both symptoms, explaining them with seasickness, but both times this was occampanied with trembling, paleness and the feeling that I will pass out. I attributed this to the stressful work and lack of sleep, however I reached home a month ago and had a lot of rest for 2 weeks. In stead of feling better, I felt worse. The dizzyness deteriorated, I lost appetite and lost weight too (6 kg). My balance was affected, but in a way, where the world around me is still, but my body feels like moving (neck, weist, knees even ancles). I am from Bulgaria and I checked in a Neurological hospital a week ago, where they did MRI on my brain and neck, as well as some tests related to the vestibular apparatus. The MRI did not show anything serious, except for some disc protrusions- C4, C5, which according to the Doctors was not serious enough to cause my condition. I was given medication for the vestibular syndrom (this is what they diagnosed me with) but I do not feel any better. The truth is that I have been on medication only a week, but I have been asked to walk every day at least 4-5 km, to train my legs, which frankly I don't even feel any more. I am ok when sitting or in horisontal position, but once walking, I do not feel gravity and feel very insecure. My legs are tense and I have difficulty walking. I feel my legs rubbary, but recently I feel the same with my arms and hands. I feel weak and and discoordinated. Now I have pain in my joints when walking or at times a lot of tension, which makes it harder to walk. What scares me is that I barely feel my legs, even though I manage to walk and keep balance. My jaw is tense and I have difficulty even chewing and all my reflexes are slowing down. I drop things and have trouble even signing my name- my fingers are weak and lack precision. When I wake up in the morning, I am all tense and I put a lot of effort to do anything. I have a bit of numbness in my fingers and sewaty palms and feet. Needless to say I panic at times, as I haven't felt this way ever and I am worried I will never get out of this condition.

Someone, please advise me, are these symptoms all related to the vestibular syndrom, or I need to see yet another doctor for the walking pain in the joints and the lack of precision in my movements. Any advise will be greatly appreciated...

Thank you kindly and God bless...


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3 Replies:

  • Hello Jeneta, Although i have used the internet to help me find info about the condition, today is the first day i have sought out a forum to hear other peoples story. Im 21 years of age and about this time last year i woke up one morning and the following week i thought i was going mad. It was harrowing, i felt out of body, lost in mind.I remember the lowest point sitting in a shallow bath unable to get to grips with anything.This un-beknown to me was the start of my vestibular adventure! As the week progressed i made an appointment with the doctors, took sick leave of work and awaited my fate..Still unable to walk correctly and feeling completely vunerable in open environments i kept the appointment at the doctors.After the consultation i was told i had a synus infection. Boxing was believed to be the culprit. Two weeks later i had the ENT appointment. The specialist confirmed all of my fears and denied any trace of synus problems..This news was a shocker, what the ***l do i do now, i thought!!The next period is a little hazy to me, (a typical symptom of the condition-short term memory loss)An MRI scan followed and like you and nothing unusual was detected.The neuro surgeon told me i had something called visual vertigo, some eye/movement exercises should clear it up.. It didnt.. The problem i have encountered most problematic with this condition is the help you recieve. The vestibuler system and dizziness is an extremely grey area, not much is known about it. It is common with doctors and even specialists to refer to it as such.There is a social problem i have encountered through out this time aswell.In any language through out the world, a broken arm IS a broken arm. People can feel for the person because they can imagine the pain and the issues that person may have to deal with day to day. Say to someone you have a vestibular ailment and the sympathy ends there, however hard you explain or they imagine, nobody can get to grips with it apart from the sufferer. Leading to not only alienation socially but also the alienation from the condition. My story i feel demonstrates this.I was a succesful lorry driver, i loved it. I woke every day with a buzz of excitement awaiting the prospect of a day behind the wheel. I was commended by co-workers, friends, family on my spacial awareness and skill.This condition has been responsible for tearing my life to shreds.Its not even as if the driving has been taken away and thats it, every thing from the moment i wake up is ruled by my symptoms which include: Pressure (partly from tension) in the brain, my eyes feel like there being squeezed from the muscles behind them.Heavy headedness to light headednessA feeling of alienation or as i call it 3rd person-ism.When i move any angle, my brain continues that way even in my physical motion has stopped.Being over whelmed in busy environments, shops, towns, roads.Sensitivity to light and moving images, tele, computer. Lack of grounding, almost floating sensation.My walking has adapted itself to over step to compensate dizziness.Lack of memory or task orientation. But as i said before the worst part is the lonelyness. Sufferers are common but i dont know any. So really i feel i am fighting a battle by myself. Its hard to win this battle when you feel, its you who has let yourself down in the first place by becoming ill.I could now write about the trials and tribulations this has brought into my life (panic attacks, depression, solitude) but i feel rather than let myself be beaton up, ill fight back.Although my job hit the rocks, i try not to let the magnitude of it all ruin me.Like you my biggest fear is, will i get better, i have been told by everyone that it will. But this is of little comfort when in the midst of it all.I refuse to take any medication for this. The medication is by and large sedatory by nature. Now admittedly not being a brain surgeon myself i still feel this to be a backward step. The main thing you need to do is accept that for however long it lasts, some things in your life will have to be curtailed and or adapted to your needs. This comes over time, you need inner strength and one person with a good listening ear and you can come to terms with your situation. Harbouring anomosity and anger has become part of me, spawned i believe out of frustration. This aside i have become stronger as a person, more confident with my own abilities through overcoming heartache and sheer terror during day to day activities. To finalise, it is not an easy journey to undertake, times are tough, some days bad some days worse. But just think what sort of person, how much strength, how much gritty determination and appriciation of life you will have when you come out the other side.Think how sweet doing everyday things, that all these other lucky people take for granted will be.This is the reason for waking up every day, not getting too low, not sedating yourself up to the hilt. The dream of beating it. Good luck jeneta, my heart goes out to you.If you wish for further chats we can swap e-mailsall the best andrew
    aandrew 1 Replies
    • October 24, 2006
    • 04:07 AM
    • 0
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  • Hello Andrew, Thank you so much for your reply. I feel much the same way and I totally understand the depression, the alienation and frustration of being in public. I have been irritable and lack patience to evereyone and everything. Now, I do take the pills they have given me and I feel a little better. I have also been advised to walk 2-3 miles a day, to train my posture and coordination. This is all great, but I suffer while walking and now I have pain in my joints and muscle. All together I feel I have no desire to do anything and I lack motivation. My entire body doesn't listen to me and it takes a great effort to do anything.While our symptoms and conditions are both related to the Vestibular system, I feel they are not exactly the same. After visiting 3 different professors in otoneurology, I was left with the impression that the Vestibular aparatus is one organ, but depending on which exact part of it is screwed up, it can give you different sensations. For instance: when walking do you feel like there is an earthquake? Or, that you or the world around you is moving back and forth? Or left and right? Or do you have a sinking sensation? Or all of the above? Whatever the sensation is, it is the vestibular aparatus, but different parts are actually affected.The last specialist I saw, used to work with astronoughts (Russian ones- how cool is that?) and he stated that in my situation it is a typical condition for someone who has been on a ship (or unsteady environment) for so long. You mentioned that you were a driver- may be this is the reason for your vestibular aparatus to be challenged and if you had a flu or something, it may have gotten out of control.I also feel the social side of this condition- I am not the same funny, party loving person any more. Not only I can't drink, but the thought of it makes me sick. I have no patience with my friends and I prefer to stay alone- much like you. I have another month before my vacation is over and I wonder if I will ever be able to get ready for work in a month's time. I do know 2 people who have suffered from this syndrom in the past and they confirm our symptoms and fears. They both got cured and one of them for good, the other still has this re-occurring every now and again. She claims that she needs to sleep a lot, but if she doesn't or she is under stress, the condition comes back again.I admire you for wanting to get cured without medication, but you should know that the pills that they usually give are only short term (just for a month) and you will not get addicted to them. Unlike you, who have eye sensation (I also feel weird with moving light, traffic, etc), my bigger problem are my ears- some times I feel them popping (airplane sensation) or my hearing is obstructed, muffled. The pills so far have helped me calm down a bit and eliminate some of the head aches. I still feel dizzy, and my limbs are weak and heavy, but I try to do the walking excercise, to prove to myself that I can actually do it. What worries me is that I feel totally numb most of the time and this slows down anything I do. I have done sports all my life and now I feel retarded.My e-mail address is : jenetanenkova@yahoo.comI would love us to keep in touch and share stories. Please remember, you are not alone in this Andrew, and this is a common condition. While very unpleasant, it is apparently curable, so let's hope one day we will feel normal again. I try to train myself to not get scared from this condition (to avoid the panic attacks, which were also a nice little bonus to the whole ordeal).Well, take care Andrew and hope to hear from yu soon!Cheers: Jeneta
    Jeneta 5 Replies
    • October 24, 2006
    • 07:38 AM
    • 0
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  • Hi Andrew, Please note that there was a misprint in my e-mail address, for which I apologize. I was in a hurry and I have written it wrong. I have corrected it now, so if you wish to write, there is no danger your message will come back to you...Thanks and take care!Cheers: Jeneta
    Jeneta 5 Replies
    • October 26, 2006
    • 03:29 PM
    • 0
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