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

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...

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 .

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.!

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 

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.

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.

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  

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

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

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 .

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

 

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? 

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.

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

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.

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

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

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, 

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. 

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!