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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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  • brenda71967
    brenda71967 DizzyDebs

    Posted

    Hi Deb, I'm sorry to hear that you are feeling like me. I have had this every single day for 1 year and 2 months. I wake up to the same day over and over. Never a different day!!! I have been to so many different doctors, too many to list, but all different specialists. MRI's, CT, EEG, ENG, seizure tests, blood work, vestibular therapy for one month, you name it, I have had it. Fortunately, nothing bad has showed up but I am MISERABLE!! Vision loss in one eye, dizziness, ringing in the ears that never stops, fullness in the ears, neck pain, stomach and lower back pain (spasms). I can't walk in a busy store without feeling lightheaded and dizzy. My vision is so off that I think I am having a stroke. I too have distance myself with friends and family .The problem is, we don't look sick and we continue on faking that we can get thru our day so our family don't understand!!!. I can't walk straight and it scares me to drive. I feel like I will fall over if I try to run or jump. I am not myself and there are times I don't want to live. It's so frustrating to see so many Drs and still have no answers! I can't live this way, it's not living!!!  Just to let you know that I have had 3 Drs tell me it's Anxiety!!!!! Maybe some of it is because we feel so terrible, but I don't ever have a decent day, it's the same BAD day over and over, 24-7 with no relief. If this was all anxiety, wouldn't i have a decent day somewhere? I wish you had an answer for me and I had one for you. Hang in there and please keep in touch. Lots of prayers . Brenda
    • marlene21102
      marlene21102 brenda71967

      Posted

      Hi Brenda you sound exactly like me word for word ,but I'm okay when I drive ,weird this condition or whatever this is .,me I've had it now for 3 years continual ,plus I've got hissing tinnitus ,neck ache .had 3 eye test all clear ,so it's not the eyes .few of us have had eye test ,again all told not the eyes ,my optitian said it's the ears causing problems .

        These symptoms are going to give anyone anxiety ,because there's been no answers for us to straightening up .only thing is to stay in touch ,see what were all doing about it ,see if what we try helps it .

    • DizzyDebs
      DizzyDebs marlene21102

      Posted

      I second that - I'm also ok when I'm driving, more trouble crossing the road!!
    • DizzyDebs
      DizzyDebs brenda71967

      Posted

      Hi Brenda,

      How you feeling today? I think we're all hoping there is an answer in this forum - I have been checking it constantly. I have a very bad cold at the moment so my ears and sinuses are really bunged up THE JOYS so basically my balance etc is worse than ever!

      If you are feeling distant from your friends and family - show them this forum, maybe they will start to understand? I let my partner read through it the other night - he was glad i had an outlet and people that i could relate to! I sometimes feel like I'm going off my head so I'm glad others know my pain!

      Bizzare, weird, weird thing to happen to us.....The search continues!  

    • Bestie711
      Bestie711 brenda71967

      Posted

      My god Brenda, that is horrible. I hope you have made some improvement and found some relief. I understand you saying you don't want to live. I was once at that point many many years ago. 

      From my own experience, I will tell you what I know. If you've had all the 'usual tests' and everything is clear, then perhaps it is anxiety, but I hate that term, because it's not the same anxiety that other people go through. The one thing that puzzles me is vision loss, unless that happened as a coincidence during all this. 

      Getting back to anxiety; everyone goes through anxiety, but not everyone goes through what we are experiencing. It's a totally different anxiety, in my opinion. For example, I hate how people use the term 'panic attack' in everyday conversation. "My boss lay a bunch of files on my desk as I was about to go home. I was freaking out and having a panic attack. Just when I thought all my work was done for the day". See, that is NOT a panic attack. A panic attack can hit you out of the blue for no apparent reason. You can feel dizzy or feel like you're having a heart attack out of the blue. 

      If you've not had any relief from seeing doctors, would you consider a psychiatrist and medication, assuming you've not explored this? Another would be a hypnotherapist who is a medical doctor, so you can have medication prescribed. I just hope my suggestions would be helpful and that you get much-needed relief. At one time, I did, so I thought I'd mention it. Unfortunately, the nature of this beast keeps changing, so it can hit you with something new. My best to you.

    • gillian76726
      gillian76726 Bestie711

      Posted

      I,m exactly the same as Brenda  except my journey so far is 5 years. i!ve been the same route as Brenda with all the consultants of various kinds,me en a Neuro,Hospital.  done the CBT route which is basically,meant,to,help re Amxiety.  got a few tools,from it about meditation and Mindfullness. I'm mhaven't lost my vision thankfully, but eyes feel,weird a lo,of the time and us no technology, makes them worse. Can't,read a,book anymore,,at all.mimhave read that there is a doctor in Kent (For Us in thenUK) who,uses,,along with the other Vestibular exercise stuff,hypnotism. I
    • Bestie711
      Bestie711 gillian76726

      Posted

      Thanks for the note Gillian. Sorry to hear that you've had it for years too. Same here. When I first had this, there was so much pressure in my eyes and I'd have them half closed and they always seemed like tears were gonna come out. I hope we can all find someone who can help us get back to normal, but I'm not holding my breath though. I've had it since 1981. I hope you're feeling better.
    • johnnynotdizzy
      johnnynotdizzy brenda71967

      Posted

      Hi Brenda

      did you ever sort out your dizziness? I had dizziness for 7 years - just woke up with it one morning and it NEVER went away, although some days were worse than others. I had MRI's, blood tests, neurological tests, hearing tests, loads of meds - the lot. Then I found a Consultant in Leicester who claimed he could fix it. He listened to me explain my symptoms for 20 minutes (looking completely bored the entire time) then said "I just want to do a quick test if that's ok". He performed a very simple test and said "I know what is wrong with you and can fix it now" - I obviously didn't believe him and thought - "yeah, right!" 

      He fixed it in 5 minutes - I stood up, looked around the room and burst in to tears (I was 42 and married with two kids - and definitely not an emotional person). 

      I know everyone is different and maybe it's not the same thing - but if you're interested get in touch. 

      J.

      p.s. I'm not some muppet looking for cash or anything - and if I can help people get over what I suffered for 7 years then that would be awesome.

    • s24802
      s24802 johnnynotdizzy

      Posted

      Hi - can you please tell me what test was done?  I have been dizzy for over a year constantly.  I would appreciate any information on what helped you.  Thank you.

       

    • Herindoors64
      Herindoors64 johnnynotdizzy

      Posted

      Hi Jonhny first of all dead pleased you got an answer to your illness. I have been referred to Leicester as well ( had tilt table - negative) just had other tests and now waiting to see Consultant - Mr Fancourt in August. Been 2 years for me. Started out of nowhere with spinning vertigo and never been right since. Dizzy everyday - no balance - light headed I could go on! Apart from that I am down to the point of thinking I will never find out what it is but your story was so positive thank you for sharing 
    • victor13755
      victor13755 johnnynotdizzy

      Posted

      Hello Johnny,

      I've had this problem of being light headed since 2003. Lightheadiness everyday in varying degrees. Floating, near faint, but never fainting lasting a few seconds, but can be anywhere. Have to drive with head straight against headrest. More I move or physically work or work out in the gym the better I feel. Sitting in meetings or driving for long distance not good. Been to several ENT'S, GP's, NUCCA Chiropractors, Regular Chiropractors. Please will you share you success with me. 

      Best,

      Vic

    • rahela1010
      rahela1010 johnnynotdizzy

      Posted

      So happy to know ur better gives everyone else hope too! Im suffering with this for over a year now its so bad i can barely stand or go anywhere an when i do i need help.. I would appreciate it soo much if u could tell me wich doctor helped u and what exactly they did.. Kind regards
    • Julie2200
      Julie2200 johnnynotdizzy

      Posted

      Hi Johnny, can you please share how your doctor helped you? My daughter suffers from these same symptoms and we have yet to find a solution. Thank you in advance for any information you may have.
    • gavin91651
      gavin91651 brenda71967

      Posted

      Not sure if yous still use this but I no exactly what yous feel it started when I was 19 I'm now 22 since 19 it's been all day every day gets much worse if it's a busy environment Dr checked me behind my eyes ect couldn't find anything I no what you mean life doesn't seem like its worth living it's horrible if I turn to quick I get very light headed and dizzy

    • tasha_98841
      tasha_98841 johnnynotdizzy

      Posted

      Hello could I ask for information on what kind of doctor you saw and the name of the procedure they may have done?
    • Sochima822
      Sochima822 eli75162

      Posted

      He hasn't been here in over 5 months. I don't think he comes around often enough to read any the posts.

    • gem1971
      gem1971 johnnynotdizzy

      Posted

      Hi there, since you are posting on a website that is meant to help people how about answering? All of us are clearly coming across this post because we feel awful, it's great that you have found relief but very frustrating and almost taunting to everyone on here that you won't share!?

    • paula59
      paula59 gem1971

      Posted

      Hi - from reading his posts, it looks like he went to an ENT and they fixed it with the epley manoevre.  That only works for people with BPPV.  They are dizzy due to crystals being lodged in the wrong place in the ear.  If you dont have this, you have vestibular migraine, it wont work.  You need to see a neurologist and get some medication.  Thats the only way you can get some relief.  Different meds work for different people.  This is actually very common but we are trying to spread the word to GPs and ENTs to recognise the dizzy part of migraine.  There is a v ery good website on facebook for vestibular migraine which would answer most of your questions.
    • Rockett0216
      Rockett0216 johnnynotdizzy

      Posted

      Can I ask how you were treated? I'm a 33 year old man that has been dealing with all described for three years. I'm honestly desperate for help. I used to run and workout everyday, now I can't do much but go to work and come home, its changed everything. Please help.

    • carey07306
      carey07306 johnnynotdizzy

      Posted

      I too would like your help.. I'm at my wits end with not having any answers...

    • maddie23314
      maddie23314 johnnynotdizzy

      Posted

      Can you tell me what the doctor told you? I’ve had same symptoms for over a year. 
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