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Light-headed, dizzy & spaced out for 2 years, can anyone help?

Posted , 110 users are following.

DizzyDebs
DizzyDebs

Hi there,

I'm hoping / praying someone can shed some light on my extremely frustrating & somewhat debilitating symtoms. Aprox two years ago I started to feel a little light headed, I was working in retail at the time and the shop was incredibly busy (I have always worked in sales, so this did not phase me, what did cause me concern was how light headed I had been feeling) At the time, I presumed it was just a side effect from citalopram - something I had been prescribed six months earlier for feeling a little low. I did think it was strange that I felt woozy and light headed six months into the course as I had only previously experienced this feeling at the very beginning. I mentioned it to my doc and they agreed if i felt ready i should taper off citalopram - so i did. Slowly but surely i reduced my dose and presumed the light headed, dizzy almost drunk feeling would disappear - much to my surprise, i am still in the same state - blurred vision, wobbly, floaty and very very dizzy.

I have been to see my GP numerous times - my iron & bloody sugar levels, thyroid have been tested. They even sent me for an MRI scan and it all came back clear. My blood pressure is a little low but nothing too alarming and the ENT doctor said they couldn't find any inner ear problems (which I kind of thought would be the case because it's not a spinning sensation that you might expect from say labyrinthitis, it's more of a constant faint feeling) 

It is a nightmare crossing the road or entering a busy supermarket. I am no longer quick on my feet and my memory is very poor too. I feel dazed and confused a lot of the time and extremely tired.

I'm only 31 and have a real love for life - can anyone suggest what could possibly be happening to me? I would be incredibly grateful as this god awful 'whatever it is' is really taking it's toll on my work, my relationship with my partner, friends and family (more so because there is no diagnosis as yet so I feel like people don't really understand what is actually wrong with me) every day I pray that this has just been a nightmare and I will wake up and feel normal again.

Look forward to your feedback...

5 likes, 227 replies

227 Replies

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  • jan1958
    jan1958 DizzyDebs

    Posted

    Hi Deb, my symptoms are very similar to yours and it all started in a similar way too. i vame off night duty having a light headed feeling which I put down to fatigue, but the feeling lasted and got worse, leading to the inevitable visit to the GP and ENT referal. As a lot of people have said ENT rarely understand the symptoms and refer on to neurologist and so the circle goes round. So now Im unsteady rather than dizzy, to the point I cant walk outside of the house unaided, have become housebound at the age of 56 struggling with the most simple of tasks. I have tinnitus to a high degree keeping me awake at night. My eyes jump about when walking like you see when someone is carrying a video recorder. I did some research and found a wonderful neuro-otologist in Kent who has diagnosed me with vestibulopathy with oscillopsia. I am due to start the rehabilitation next week.

    So Deb consider getting yourself a private initial referal to a neuro - otologist if you can, they will be the very best to get a diagnosis which is so important for lots of reasons. All the best Deb. Jen X

     

    • gillian76726
      gillian76726 jan1958

      Posted

      Yes I agree Jan, just get,the best people for the job. I  waited 4 years to see a n.otologist recently (wish I'd pushed for it ages ago, but got stuck with an audiologist for a year and only when he discharged me with no help or diagnosis, a year I'll never get back, grrrr).  Can I ask Jan, what specific test showed up your diagnosis, as so far the regulR tests I,ve had Are inconclusive, which I am told isnot unusual. And what does the oscillopsia part mean? 
    • jan1958
      jan1958 gillian76726

      Posted

      Hi Gillian, when i went to see the neuro otologist he did some quick movements with my head to see how my eyes reacted. My eyes are slow to catch up which is what causes the oscillopsia the eye movements I get when I move my head. like my head is being shook. That and some very specific questioning about my history and how I feel, he knew exactly what is wrong with me. This guy is very experienced working in this specialism for well over 30 years.
    • gillian76726
      gillian76726 jan1958

      Posted

      Well I think I had that kind of test, but as you say, it,s all down to the questioning.  the only thing that they did say was I. Relation to the rotating chair test thing they do, with the red light moving around etc etc 'VOR suppression revealed some breakthrough nystagmus' which I a. Not sure what that means, but I remember her saying something similar to what you say about eyes being slow to catch up. And that is whT I feel I am compensating for, not as bad as you, nevertheless, 4 years of it takes its'toll!!  I also get wordword
    • gillian76726
      gillian76726

      Posted

      Sorry the site jammed here.  ....gets worse later I. Day so by this time I am struggling and can,t do much without feeling very discombobulated!!  would you mind giving me the name of your guy, not that I will probably see ho. As I am under the hospital in London. But wouldn,t mind researching him and seeing If he has any association with them as I know they sometimes was do?  You can PM me with that of you want. Thanks.
    • jan1958
      jan1958 gillian76726

      Posted

      Hi, sent you a private message when I worked out how you do it!
    • DizzyDebs
      DizzyDebs jan1958

      Posted

      My god Jan you have hit the nail on the head, describing the symptoms is quite tricky, I have often say I feel quite drunk but the 'video camera' reference is spot on, my eyes are the exact same when walking - it's a very very strange sensation. Quick movements or lots of visuals make it worse.

      Feeling stressed or excited also heightens the sensation - hence why my GP often refers back to anxiety BUT i know my own body and know there is def more to it! Don't get me wrong there's been a few times I've thought 'am I actually going off my head' but since joining this amazing group I am feeling hopeful that I will get to the bottom of it!

      So many poor souls in the same boat...I genuinely thought I was on my own with this thing! It can feel very lonely...as many of you have quoted, you look ok so people just presume you are. It's also very hard to explain to your loved ones, colleagues etc because you don't actually know what is going on yourself, all you know is something just ain't right!!

      When you get the chance, can you please msg me the name of this wonderful chap that diagnosed your condition? 

      Look forward to your feedback x

  • paula59
    paula59 DizzyDebs

    Posted

    Hi &QI sit still or lie still and dont move my head but as soon as I move my head its instantly back.  Im very very dizzy walking about and especially if Im outside, I feel really unsteady.  Ive had to give up latin and ballroom dancing and ski ing and after struggling for two years, I gave up my job in December because it went full time and I couldnt manage full time.  Ive been sick in a conference room due to the white walls and lighting and have trouble with noise.  Sometimes I cant go into ASDA or B & Q because of the lighting.  I dont have severe headaches though, just the constant dizziness which never goes unless I stay still or am asleep.  My life has disappeared.  Luckily my husband is very good and mostly supportive but it really gets me down and I desperately want it to stop.  It sounds like a lot of people on here have the same thing.  I had never heard of silent migraine before.  You need to see your GP maybe there are some tablets which will work for you, 
  • paula59
    paula59 DizzyDebs

    Posted

    Hi DizzyDebs

    Site got stuck I think.  I have the same for the past two years and ive been diagnosed with silent migraine.  Ive seen the ENT. neuro surgeons and now neurologists.  I also have trouble with lighting and noise.  I feel very sick too. Ive had all the tests and scans and they all came back OK.  I had not heard of silent migraine but he tells me I have classic symptoms and they are the same as yours.  It is ruining my life but they are trying to stop it with medication.  Obviously being anxious doesnt help but who wouldnt be, its very frightening.  See your GP and get a scan as a starter then see a neurologist.  The tablets may work for you.   Sorry if you get this reply twice. 

    • DizzyDebs
      DizzyDebs paula59

      Posted

      Hi Paula,

      It's terrible living with such a condition. I don't actually feel sick but constantly off kilter with balance and eyes flit around a lot again just like the video camera ref that Jan described. I had an MRI and CAT scan and since there was no signs of MS found so they never went fed back on anything else. Can i ask, who eventually diagnosed you with silent migraine and what tablets have you been prescribed? Finally are the tabs starting to ease your symptoms? x

    • DizzyDebs
      DizzyDebs

      Posted

      PS I totally agree with lighting and noise too - my eyes and ears have become very sensitive so I always feel pretty agetated! Do your symptoms heighten when you're excited or stressed? I love shopping, festivals & dancing but anywhere too crowded or with too many visuals makes me want to pass out, small crowded spaces are the exact same! 

      Did you ever think you were over breathing? I think i probably do however the symptoms are there so often, even when i'm in my most relaxed state. 

      I'm not sure if it's an ear thing or not, god my head is actually wrecked with it but going to look into speaking to a neuro otologist about vestibulopathy with oscillopsia (as mentioned by Jan1958)

    • paula59
      paula59 DizzyDebs

      Posted

      Hi Debs

      It was a neurologist called Mr Jones who belongs to Salford Royal Hospital.  Ive even phoned his secretary when I had a panic attack and he saw me as an emergency.  He is good and he swears I have classic symptoms and that it is def silent migraine.  The Migraine Clinic in London explained biologically how it all works, how when you screw up your forehead it irritates your corrugator muscle causing frown lines and then in turn that irritates the nerve that runs thru your face, top of head, sinuses, and thru back of head.  This nerve is then inflamed and causes all the weird stuff and dizziness.  You have to freeze the muscle for a while to give the nerve a chance to heal.  My botox did help with the headaches etc and the eyes jumping about but not the dizziness. Ive been on propanolol.  Nortriptylene, Topiramate and now Zonisamide and Duloxetine 60 mgs.  The Dulox and nortrip are anti depressants.  They helped the most the get you to relax and hence get the corrugator muscle to stop bugging the nerve that runs thru your head.  Botox does the same.  I actually thought I had MS which caused the panic attack so finding out I had silent migraine was a bonus.  I think the lighting and the noise gives it away that its silent migraine.  The eye thing has gone now thank god.  That got cured with botox. 

  • jan1958
    jan1958 DizzyDebs

    Posted

    Hi Deb, have sent you a privare message with my consultant details. Going up to Kent tomorrow to see consulant and physio. will feed back to you and everyone how it went.
    • gillian76726
      gillian76726 jan1958

      Posted

      Yes good luck tomorrow. Hope,it,goes well and let us know what they do. Or say x
    • marlene21102
      marlene21102 gillian76726

      Posted

      Hi Gill I second that. More info from different consultants the better ,has to be a few more switched on. Ones out there ,says me sat here ears full up like ones deaf ,and balance off .Hows yours today ? Probably a daft question ? The answers out there somewhere .X
    • gillian76726
      gillian76726 marlene21102

      Posted

      Yep we,lol hopefully find one one day.m Have got a physio appointment come through today for Ja. 15th.  And want to know Jan,s to compare what they give me, as I hope they aren',t the same old same, cos if they are I will complain!!!
    • marlene21102
      marlene21102 gillian76726

      Posted

      Yes I'm waiting for you to have that app ,then girl I know with the dye MRI this month ,see what comes back .My ears both high ,don't get why one can be high and other low some days ,then another they're both high ,as today .

        Eustachian tubes ? Is all I can put my finger on .Your a trooper to getting an answer Gill ,never known anyone to do as much as you have .E Mail later X 

    • gillian76726
      gillian76726 marlene21102

      Posted

      Hi Marlene, well I guess our ears along with the Tinnitus and everything else have a life of their  own eh?  along with the barometric pressure, wester etc. I personally have been getting headaches more this last week for,some reason, but also stiff neck problems, so who knows anymore.  Am not holding my breath on his physio,lark after several goes at it, but will give the. The benefit of he doubt until I attend on 15th.  also curious to Jan.s exercises nd see what they give her. Have learned that you need to,chase up,these depts, cos if you sit back and wait for them To sort themselves out you,ll wait a long long time!!!
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