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

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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...

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  • Posted

    Hi Debs your not on your own out there ,I've had this balance now for 3 years ,I get  Rocking /Swaying motion ,there are exercises ,best thing you can get is a booklet on these exercises .Did you have any sinus congestion prior to the balance ,that if you did could be prime cause to any balance issues .Its hard living with it ,I can whole heartedly agree.its a bad condition to get .Hard explaining it to ones who have never had it .What I will add ,don't have ears syringed by just anyone who got no idea how to do it correctly ,You can end up with tinnitus ,same goes with a exercise called the Valsalva ,again been known to cause tinnitus .I have tinnitus hence why I say this. Hate for a soul as young as you to get this condition .There is a site for Dizzyness go and have a read up .Takecare of those ears ,only small things but they need care for you to not cause further problems .Will PM you with an address it's a free booklet if your in UK ,lot of interesting info to this balance .
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  • Posted

    Hi, well am sorry to hear you have his problem too. I m same as marlene, not dizzy spinning, more swaying feeling etc.  Imwould follow what Marlene say re the booklet o. Exercises, but as Imwould push your gp to refer t

    you to an Otologist , preferably a Neuro Otologist. (ENT,s rarely find anything. Wrong with us people!!!) They go more in Depth testing wise, so as the Ent have discharged you you are fully tilted to go back to,your gp, ask for a second opinion, but this time wit the aforementioned.  Don.t get fobbed of seeing an Audiologist either. although I am not discounting them completely,mThe time wasted waiting fo the  appointment, then . Seeing them, then Going back and forth and before you know it another year has gone by and you,re no further ahead.!

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    • Posted

      Hiya Gill was just going to E Mail you ,just p m Debbie with that address,and phone number ,yea were both in it ,Debbie's so young to get caught up in this trouble ,as you've said it goes on and on. Look at the visits to Drs and hospitals you've had alone .still no further ahead .

        Hope Debbie reads up on other post ,know others her age along with you and me with this ,Dizzy Darren ,Anne Travis to name a few ,Darren what 45 yrs with it .We need to get ENT with this to get the picture as to how this can really disable people .How can they help if they've never experienced this themselves ,near nigh an impossibility .

        Will E Mail later Gill XX 

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  • Posted

    Hi debs, I koto have had this problem which started when I was 25 and eventually fizzled out at 47 started again at 63 and lasted another 2 years. Over the years I noticed that the really bad episodes were precipitated by good streets, eg getting engaged, getting marriedn and having my first and only child, a son, Al h which happened in less than a year.
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    • Posted

      Unfortunately I do not have a very strong immun system so I pick things up easily, and also because of childhood polio I have several related conditions. One day last year I wrote down all my medically diagnosed long term health conditions and I have a total of 14. I am now 67 but these were all diagnosed under 65. At this precise moment I am not great. I developed a viral throat infection on Christmas Eve, then on new years eve I realised my blood sugars were out ot control(I am diabetic) went to the doctors and discovered I had a bacterial water infection, then three days later realised I had oral thrush!!  Not a great start to the year! However in myself I am ok and make the best of things
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  • Posted

    Sorry to hear you feel unwell.  If you feel anxious and stressed with those symptoms meditation could really help.  I meditate twice a day and it's done me the world of good.  You can ask your GP for Mindfulness meditation on the NHS. Some GP's may not know it's available on the NHS but it is and this was confirmed by two doctors.

    Meditation reduced anxiety, stress, depression and is very calming and centering. There are also free Mindfulness meditation recordings online to listen to.

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    • Posted

      Hi Helen this is very good advice and something the average GP does not really mention when you visit. Haha they seem more concerned with getting you out the surgery in record time! 

      I'm shocked at the amount of poor souls that are suffering from this weird condition. 

      I really hope we all come out the other end - I will personally will feel like the richest women alive! 

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  • Posted

    Hi  kiddo I am 57 years old I have had the same problems as you a little more severe for going on 5 years also vertigo this summer  it's a real bummer had  had tests had scans had it all seen specialist still docs can't figure it out so here I am haha,  basically, on my own  so do physico twice a day the therapist came which I went to on my own she did wonders for me  I am retraining my brain  to help my balance issues  also have tinnitus withahah this hearing heart beat in left ear all the time I know itIis no fun but hang in there things will get better with time  still not normal but at least got Some things to do to help myself   hope the new year brings you better  health  
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    • Posted

      I hope it brings health to you too Debbie. So kind of you to reply! 5 years is a long time, you must be exhausted! I do worry that mines will hang around for years too! I would like to start a family next year so praying it disappears before then sad 
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  • Posted

    Hello Ms. Deb,

    I am Ben, I started one of these discussions back about mid-year this year, and added to it several times.  I live in the U.S.A. and my health care is paid for by my employer. I have been dealing with the light head and wavy feeling for almost a whole year now.  Mine started with the room spinning and that took a couple days to subside.  Then I was seeing double for about 3 weeks, along with a lot of trouble reading and had to work at reading to get to where I am now, able to read, but it is not fun anymore no matter what the subject is.

    I would like to comment on your situation if I may.

    I am not a doctor, I am someone who used to pride myself on doing things exactly right and getting to the root of problems as my solving technique.  Once this dizziness hit me I have all but completely lost my ability to think critically and it is very difficult to stay on subject.  So I am not able to analyze what is going on as well as I used to befor the onset.  

    But with that said, I will do my best to help you understand what I think is going on. First, to help qualify myself, I have had so many tests and seen so many specialists that even though I am not qualified or certified to make comments, I feel that I have quite a lot of information at hand and I am willing to share with you if you are able to appreciate my efforts.  

    Second, please bear in mind that I am having great difficulty typing and sorting thoughts to make this writing make sense and to make it possible for you to read. BUT, for me it is a form of therapy, in that I am working with the keyboard and trying to submit my thoughts and ideas to you, so it is not a oneway  deal either.  It helps me to try to help you.

    OK?  Realizing that you have stated that your doctor did not find anything in your inner ear to blame the woozyness on, I will tell you that your inner ear is just about the only place that one can find cause.  Although it could be water on the brain. And it could be an unbalanced vitamin, like B12, I think they would have found that if it was, so my stand is that it is exactly coming from your inner ear.  

    The fact that you never experienced the spinning sensation tells me that you must have gotten over the "viral" part of the infection very quickly.  Possibly you slept while it was peaking.  A near miss as it might be characterized.  You undoubtly had an infection, but it didn't last long and didn't do much damage to your Vestibular Nerve, but you are left with the aftermath of the encounter, as are so many of us who have the woozy feeling.  You must understand the importantance of balance information that is delivered to our brains by the nerve that connects our inner ears to our brains.  

    This information is so vital to our senses that it is responsible for our feeling of well-being.  From balance to thinking, speaking to seeing, everything we do is tailored and massaged by the balance information we get from our innner ear.  It was developed initallly during infancy and refined as we began to walk upright and then run and ultimately do anything we want including acrobatic moves and athletics.  From tight-rope-walking to tumbling, we rely upon the information that we have been receiving from our inner ear with certainty since the beginning of life.  Then along comes something that damages the nerve and it sends false information about balance and that affects everything we do, including how we think and  feel.

    Rehab is something like recovering from a stroke in that we must retrain ourselves to use the information supplied from our inner ear, rearranged by the damage to the nerve, by doing things that " we know to be correct" but don't feel right about  (the woozy feeling), over and over until we are able to use the information like we used to without doubt.  The difference is that for a stroke victim the retraining is done in another area of the brain uneffected by the damage from the stroke.  In other words, we must relearn what we learned way back in our babyhood, befor we had any adult ability to reason or put scientific sense to it, and just believe that the new information is correct.  That is what I meant by doing things that we know are correct and regardless of the feeling, just believe it to be correct.

    Well, that's my stab it at.  I hope I have helped you understand what is going on a little better, and more, what to do about it.  As I stated befor, I have seen a lot of doctors and specialists and I am convinced that the exercises they have had me do are effective, but it will take a long time to evercome the sensation of dizziness and inability to think clearly or remember because of the misinformation that the damaged nerve is sending.

    Ms. Deb, this took me about an hour and a half to compose, so you know that I have tried to help you and I am sincere.  I do hope you will understand better what is happening and what you have to do to get on with your life.  If you would to know what exercises I have been doing for the last 8 months, I would be happy to share.

    Take care.

    Ben

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    • Posted

      Hi Ben thank you so much for taking the time to reply to me in such depth - I'm sure I'm not alone when I say that this kind of info is essential to all of us that are suffering. 

      I have wracked my brain for over two years, trying to remember exactly how it may have happened but I truly cannot recall being ill, I just remember having a bit of a sore head and feeling very woozy at work one day and sadly it has continued for over two years.

      I have been tested for MS and obv had numerous other tests but everything is coming back clear. As you mentioned, thinking coherently can be tricky so it's difficult explaining everything to your GP. 

      I was sent to a respiratory therapist for six / seven sessions to make sure I wasn't over breathing. I have only saw the ENT once, he did the tilt test and said that it wasn't labyrinthitus although he did say that he would refer me to a therapist so I could undertake exercises?! I wonder if it will be the same ones that you have been doing?

      Also were you ever tested for POTS syndrome or did you always think it was an inner ear issue? 

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    • Posted

      Hi Deb,

      I do not know for sure if I was ever tested for POTS, only just now heard of it ( thanks to you!) and took a 10 second look to see what wikipedia says it is. It looks like it has something to do with blood pressure changing when you go from a seated or laying position to stand up.  I do not actually faint, I just feel like I am about to. 

      One time only while I was giving a blood pressure test they asked me to stand up from seated to see the difference. It was not enough for anybody to get excited about.  I don't know what that difference was either, so I will ask at my next appointment.

      As with you, I was tested many many times and I asked for 2nd opinion.  I wanted to have new minds looking at my situation.  That is why I went to the University of Michigan Medical School.  Although they did not re-do all of the tests, they did duplicate a couple, and added some new ones.  Then they looked at the previous test results.  At the U of M they seemed to do a much more indepth study.

      At the U of M Hospital I was seen by a German Doctor, and she was very curt.  She actually became annoyed by my questions.  But one thing I was able to flush out of her was the fact that the balance information we all get from our inner ears is so critical that it effcts everything about us.  After repeated questioning it became very clear that the inner ear, in my case the nerve, Vestibular nerve, must have become damaged somehow and the most likely way is from an infection.  BUT I NEVER FELT SICK.  I had no idea that anything was wrong.  I was off work for 3 weeks, using up the last of my vacation time, befor I was going to be off for an extended period of time for knee replacement, and I was relaxed and laying on my living room couch when I got up and suddenly the room began to spin (from right to left) and it made me nauseous, and so I hit the bed after a quick trip to the bathroom to relieve the nausea feeling.  I simply thought that I must have come down with the flu, but not fever, no head ache, no chills.  It took 2 days to get over the spinning and then I had the double vision as I mentioned befor.  

      So to answer your questions I was not specifically tested for POTS   

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    • Posted

      ( I hit a key that posted what I was typing befor I was done) 

      I went to my family doctor and he thought it was BPPV and we went from there.  I had no idea about the inner ear until I hit the U of M Hospital.  Now It is just about all I think could be the problem.

      Thank you for the reply, and I am going to post the exercised that were prescribed for me soon.

      Ben Cresswell

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    • Posted

      Hi Ben, I don't faint either I just feel woozy and faint (don't know if this is to do with ears speciafically but then all other tests are coming back clear) 

      Get them to check you out for POTS syndrome if you are not convinced that all your problems are coming from your inner ear? 

      How's your therapy coming along anyway? Have you had any relief in symptoms? 

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