Lightheaded and dizziness won't stop. Doctors don't know what's wrong. Looking for some hope!

Posted , 7 users are following.

I'm new to this sort of thing, but I'm getting really scared and don't know where to turn. Quick history: I'm a 28 yr old female, very active, graduate student, no major health problems. 11 year history of recurring dizziness that typically lasts about 4-6 months before slowly disappearing. Seems to get me every couple years or so, never been able to identify a trigger.

Last week I was sitting on my couch when suddenly my ear started ringing. This lasted a couple of hours and then all was fine. Next day I was getting ready for bed and suddenly became dizzy. It has not stopped since. Constant lightheaded feeling, sometimes it's almost like tunnel vision, or feeling like I'm drunk, and sometimes like my eyes can't "keep up" with my motion. It's rarely a true spinning sensation unless I bend over and stand up very quickly.

There is always a pressure in my right sinus areas, but no ear pain or mucus. Hearing is normal. I have been tested for every possible condition over the years and no one has ever figured it out.

I am so scared that each time this happens, I will be stuck like this forever. It's the worst feeling in the world. What if my brain just stops compensating? Anyone out there have any success stories? I've given up on anyone ever figuring out what it is. I think it is residual damage from a ruptured eardrum that I had as a child, and that in stressful times my brain decompensates, but that's just my own guess. I want my life back and I'd love to hear some succes stories where people recovered from this nightmare.

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  • Posted

    I completely feel where you are coming from.

    It is a awful feeling to wake up

    Each day feeling this way. The anxiety from this is overwhelming. I am

    Trying to figure Out what triggered this if anything.

    I hope you find answers.

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  • Posted

    It sounds like uncompansated labyrinthitis. .ive had it for 6 years now .it hits me everytime I'm ill any cold can bring it back ... it's exactly the same for me .. I developed labyrinthitis from a head injury in 2011 .. first time I got it was horrid it lasted for 2 years then I started to feel better and could carry on with my life but I've always felt a bit off.. its never really gone away I've always felt slightly wobbly. .but now it's back 6 years after the original head injury. . It's horrid. .my wifemail thinks I should be at work. .she can't see my problem at all ..I look ok but I'm not at all.. people do not realise how serious this illness is ... one love to you ..it definitely sounds like labyrinthitis I'm afraid. .I hope you sort it ..one love to all I know your pain

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    • Posted

      If anyone in your family or friends dont believe you, just print off a page from any Medical,page that describes what the symptoms are. I use Vestibular disorders Association's page as they have a good description on how it affects us. When people read this they are totally,surprised and more sympathetic!

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    • Posted

      They do believe me ..they just think I look ok ..but I'm not feeling ok .. all I keep hearing from everyone is it was 6 years ago ...and surely the doctors can help these days...After 6 years of not feeling myself at all I do not appreciate what my family and friends are saying ...the doctors can't do anything apart from give you drugs what do not help you ..apart from delaying your illness. .that is all those pills are doing. ..my anxiety is through the roof at the minute also... I done vrt and all the physio for over 2 years .. but still I have a feeling of a full ear and single tone on my left ear ...with severe migranes too ..it is hard and I have lost all hope of a full recovery. ...I am struggling to go anywhere let alone try and work .. I hope something changes for me soon I'm tired of feeling like this .. sorry for the down beat message people I'm trying my hardest to stay positive I have two young daughters and a wife that keeps me going. .. one love all just be positive ?

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    • Posted

      Yes i do know what you mean with the lack of understanding. i just say to,people, "imagine how you feel when you go on a merry go round and that first feeling you have when you get off', well that's how i feel all the time!  You dont need to be falling about all over the place, because your brain is,constantly compensating to keep you balanced as best as you can! Where do you,live UK?

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    • Posted

      BE PATIENT

      One of the best things you can do as a caregiver or friend is to be patient and accept that, even if you don't understand what your loved one is going through, their symptoms and feelings are real. There are many things a vestibular patient can no longer do, which directly impacts their friends and family. You will be best able to support your loved one if you learn about their condition and listen to them when they explain how they are feeling and what they need to manage their symptoms.

      ANXIETY - IS IT NORMAL?

      Vestibular disorders have real, physical symptoms that often cause patients to behave anxiously, which can be worrisome for their loved ones, especially when that behavior is different than the patient’s “pre-vestibular disorder” behavior. Sometimes it is useful to determine if worrying has become excessive to the point that it can be defined by a clinically diagnosable mental health condition so the patient can be encouraged to seek help. It is important to remember that labeling the patient’s condition is not intended as a judgement. Whether or not a vestibular patient or their loved one receives a mental health diagnosis, they can still benefit from professional counseling to help them cope with the intense and understandable changes these conditions impose on their lives. Click here to learn more about anxiety disorders common among vestibular patients.      Print this  out and give it to yr family and friends

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    • Posted

      CAREGIVERS NEED HELP TOO

      The friends and family members who care for vestibular patients provide essential support. Without firsthand experience, these individuals are challenged to learn about vestibular disorders in order to lessen the impacts of their loved one's illness. VEDA seeks to focus attention on this important part of our vestibular community and to support their efforts.

      Understanding what your loved one is going through

      A Patient's Message to Caregivers

      Take care of yourself

      Caregiver Survey

      About vestibular disorders

      Tools for planning and crisis management

      For Patients

      Learn about and participate in research on caregiving

      UNDERSTANDING WHAT YOUR LOVED ONE IS GOING THROUGH

      [caregiver hands] Vestibular disorders can be difficult to understand if you are not the one experiencing the confusing and often debilitating symptoms. A vestibular patient may look normal to the observer, but their brain is on overload processing the conflicting information it is receiving from the eyes, inner ear, and body. In addition to the typical symptoms of a vestibular disorder - dizziness, nausea, imbalance, vertigo, tinnitus, and migraine, just to mention a few - many vestibular patients have a difficult time concentrating, some experience anxiety from not knowing when their next vertigo attack will occur, and most deal with some form of depression due to the loss of their independence and other factors.  (T his part should go first, btw, )

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    • Posted

      Yes Birmingham UK ..I'm in the building trade what I can't do at all at the minute And I'm a vinyl dj... and that plays havoc looking down at two spinning vinyls 😃 it is hard work

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    • Posted

      I can't offer any advice on labyrinthitis but totally sympathise with the attitude of friends etc. I'm currently suffering my second major attack of benign paroxysmal positional vertigo. My symptoms vary from day to day, but there are some days when I can barely walk straight and don't like to leave the house. Some of my friends have been quite unsympathetic about this for the same reason as your wife - I look OK, and they think vertigo just means feeling a bit dizzy or light-headed.

      I know it's a bit extreme, but I used shock tactics on a couple of my disbelieving friends when I invited them to my place the other night. Because my vertigo is positional, I can elicit the Dix-Hallpike sign at will. I positioned them carefully, told them to watch my eyes, then lay down quickly on the rug with my head extended and turned to the right. They both recoiled in horror from the resulting nystagmus, never having seen anything like that before. I think it worked and they must have spread the message, as I've just received a lovely bouquet of flowers from a whole group of my friends!

      Gillian's idea is probably a better one (thanks for that btw) but if you can actually elicit signs, shock tactics can sometimes be effective.twisted

      PS: I have an appointment with a highly-recommended vestibular physiotherapist in 10 days' time, so am hoping to get some relief from this.

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    • Posted

      Thanks for the advise. .ive told them many times how it feels being like this but if you havnt had it you will never know. . Ive done some work in between bouts of illness and dizziness And this just brings on stress for me .. I'm a self employed bathroom installer and dj ..and its hard to earn money now im finding it hard because the stress just brings on Anxiety. .it's a catch 22 . I also because of being stupid fell off my bike whilst training my balance because of labyrinthitis. .I did not realise for two weeks I'd dis lodged 3 vertibrae in my neck that's another thing that knocked me back to dizziness .. you gotta laugh . So Yea im sick of going on about it to friends and family now because I don't want to be just talking about my problems all the time .. Anyhow you got to keep your chin up and not dwell.. get out there best you can one love as always all

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    • Posted

      Would you be able to get to,Leicester Infirmary. The reason i say this is there is a really, really good Department there that deals with this. I'll find the details for you and you can get your GP to refer you there.!! I onow it's possible to go outside your own area as when i was going to a London hospital some other patients were coming from all,over UK.

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    • Posted

      I'm with bupa Gillian .. ive been seen about 10 times by all different doctors and departments. .. it's a viral infection that will not budge it attacks me everytime I'm ill ..something I know I'm not going to shift in a hurry.. one love to you and thank you

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    • Posted

      Yes i believe mine was started by a virus  too. I am just on NHS so cant go to  a good Balance Clinic. What treatments have you been given (excluding drugs!).  I know I will have it forever too. I just want some tools to deal with it when it's bad and wish I was nearer to a decent one like this.

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    • Posted

      Balance training & VRT from bupa basically .. if you type in youtube Rebecca.s story labyrinthitis. . The exercises in this video is what I done .. plus stand on one foot arms out wide.. then close your eyes .. hold it as long as you can..it does centre you in your head a little .. please watch it did help me .. but like I say it's been 6 years now for me .. and still it's hitting me .. I try my best to keep healthy basically is all we can do .. hope this helps you one love as always x

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    • Posted

      Hi, watched this. I cannot stand one one leg, whether eyes open or closed. Something even when younger and doing yoga was impossible for me. Now older with arthritic knees it's even  ore out of the question haha! Themother exercises i,know of well. Have been through them. With two different hospitals am afraid they made no difference to my condition .

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