Dizzy and Light Headedness

Posted , 11 users are following.

Hello,

I have had dizzyness and light headedness for almost 6 months.  It started in early January of 2014.  At first I had a feeling that the room was spinning.  Just like I was on a merry-go-round.  Nausea followed and I thought it was the flu.  No fever, no chills, no cold feet though.  TO STOP THE NAUSEA I GOT COLA SYRUP from the pharmacy.  The cola syrup mixed with a little water stopped the nausea so fast it was unbelieveable.  I recommend getting some cola syrup if you have any possibility of nausea.

I have had MRI and CAT scan with contrast, saw an ENT had all of their tests, gotten therapy where they flipped me around.  I have been diagnosed with Ménière's disease, but many people with whom I have spoken have known someone that had what I describe and they were told it was a virus.  Nothing has arrested the feeling like I am not me.  It is very hard to concentrate and I could not do my job if I had to go back to work.  I should not be driving the car because I am not aware of all that is going on around me.  Drugs don't help.  

I have made some progress in lessening the feeling with time passing and all of the exercises I've been doing, however at about 4 1/2 months I leaned over to make my bed and the room began to spin again.  I had to lay down for about 2 hours befor I could function again.  Laying down does help my perticular situation and I find that the dizzyness and light headedness get worse when ever I sit up or stand up.  Staying busy does not seem to make any difference, in fact the whole time that I'm busy  I am stumbling around and knocking things over and making messes.  It is very debilitating to live this way. 

I am worried that I will suffer an attack while driving and so I don't drive unless I cannot find a ride to my doctor appointments.

Thank you for listening and I hope I can help someone with my bit of information about the COLA SYRUP.  I will monitor to find more information on what I have.

Ben 18JUN2014  

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  • Posted

    Aww hunnie, it is horrible. I've had what they think is labyrinthitis for 11 weeks. Mine came on very suddenly and for the first week I was in bed! I'm now getting better, I'm more woozy/drunk feeling but that's fading into the background. The worst thing for me at the moment is the extreme fatigue. It's awful. I can sleep and sleep and I'm still exhausted. 

    I've seen a neuro physio and am now doing VRT which initially made me feel horrendous but I think has really helped me. I've not seen ENT as there is a 9 month waiting list and I've not had any MRI or anything as yet. (I live in the UK) hang in there. Keep active but don't overdo it, rest when you need to. Keep well hydrated, eat regularly but not too much sugar and salt and avoid caffeine. Are you sure it's menieres??? With you bending to do your bed and it came on or sounds a bit like BPPV. It may be worth seeing you Dr again to discuss it. 

    Anyway keep smiling and remember you aren't alone! Xxxx

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  • Posted

    Hi Ben I really feel for you,unless you have vertigo or labs no one knows how horrible and scary the feelings are.its so hard to get doctors to understand,it's all guess work only you know how you feel.its took me six years to find one who explained everything,he said if you have vertigo you will get the spinning feeling for a few seconds and then you ll feel quite normal,with labythrinits you never feel right, you have a thick head,your eyes ache,you have a fuzzy not quite right feeling all the time,the floor feels like its moving,anxiety and vertigo feelings. Never be afraid to tell the doctors what you feel,if you don t think you re getting answers try another doctor,I d never heard of cola suryurp before( I live in England) I ve always took cyclizine for sickness.i must admit since I ve started my exercises I m feeling a little better nowhere near perfect but I only started two weeks ago😀 try to keep positive and keep as active as you can,even if that's only doing a few jobs around the house or getting someone to go for a short walk with you,your brain needs to learn that moving is natural,I know it's the last thing you want to do.stay strong and remember you re not alone x
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    • Posted

      So pleased I have found this site.Feel exactly the same,but it is so debilitating and if you have not experienced this condition it is impossible to understand it.My friends just see me as neurotic and a hypochondriac,and my GP tells me to get out more and enjoy myself!!!An impossibility when I can hardly stand up straight for any length of time.I have not felt right for 18 months.

      I would not wish this condition on anyone,but am really pleased to know that there are others around who understand what I have been describing to my doctors.

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    • Posted

      Hi Wendi,I m sorry you re going through this as well,I ve had the same things said to me,the stupid thing is we d love nothing more than to go out and enjoy ourselves!!😃its because people can t see the nightmare we re going through,I ve learnt not to waste my energy thinking about what other people think of me.this site is god send you re not alone.don t let your doctor  tell you you re depressed or its just anxiety you know your body,I m just grateful to my last doctor who gave me these exercises for the first time in 6yrs I m beginning to feel a little more human.Stay strong x
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  • Posted

    Thank you to all who have replied.  

    I am blessed with an employer who is standing way back out of the way while I battle with this health disorder.  Oh I am sure that eventually I will have to try to go back to work or quit, but for now they are not pressureing me to hurry up.  My health care costs are paid for by Blue Cross Blue Shield Insurance ( l live in the States) and so far they have paid over $20,000 for doctors and all of the various tests and diagnostics, but it seems like all of the Doctors involved are looking for the preverbial silver bullet, something to be revealed by tests, rather than by knowledge of the situation. Not once has anyone ever mentioned that it might be a virus, and to date no one has prescribed antibiotics for it.  

    My original refferal to an ENT was to rule out BPPV.  At the ENT office they flipped me around on a table and told me to go home without leaning over or turning my head and to stay upright for 24 hours.  That was supposed to put a "calcium crystal" back into place.  It made no difference.  Then the ENT did a lot of tests on my ears with video cameras aimed at my eyes to track eye movement.  They blew hot air than cold air into both of my ears.  Next they put head phones on me and sent sounds like rapping or knocking into my  ears alternately for 20 minutes at a time.  Finally they did a simple hearing test which I failed miserably in my left ear.  At that time they decided I had the symtoms of Ménière's.  IN MY LEFT EAR .

    Well, no one listened to me when I told them that my left ear has been subjected to loud noise at work for the last 35 years.  I knew full well that I couldn't hear as well out of it.  But I could hear them and I seem to do ok listening to anything I want to.  They didn't pay any attention to me when I told them that I had a fullness in my RIGHT EAR, that my RIGHT EAR felt like it was burning and itched way down deep and that no amount of  scratching or pulling or wiggling my ear helped stop the itch.  Finally, in the notes to my GP no one mentioned that when it first happened I was seeing double, it was as if I never told them, but I did.  I told them that I could not focus both of my eyes on the same thing, and to watch TV I had to cover one eye.  They seem to disregard my input and keep using all their "big guns" to find the answer.

    I have told all of the doctors that I had just finished doing a period of 9 years working from Midnight to morning, and made sure they understood that I may have a body circadian issue, but it is not keeping me from sleeping.  But they all seem to think everyone needs to sleep at night and a lot of hours uninteruped.  

    Next, my Neurologist asked me to have a sleep study done, which if you ask me is unrevealing because those people see everyone as having "sleep apnea" to some degree, and indeed I was diagnosed with a pretty bad case of sleep apnea.  I told them that I sleep a lot, and when ever I want, and I do not feel that tired.  I sleep in one to 2 hour intervals, day or night, because I do not work right now.  I am under no pressure to sleep in a hurry and get back to work or anywhere else for that matter.  Again they are looking for the "silver bullet" and got me a cpap machine and told me to start sleeping with it.  So far it hasn't helped either.  I do feel more rested using it, but the feeling that I can not concentrate is still there.  

    Currently I am getting Physical Therapy to try to lesson the effects on my feeling of well being.  The therapy is aimed at desensitizing me to the feeling of disorientation and drunkeness.  I honestly believe the PT people are going through motions that are normally done to patients that do indeed have BPPV.  Occaisionally they put me though a manover that brings on a rush of the feeling of instability, but it is always on the RIGHT EAR side.  The left ear manovers don't do anything.  

    I feel like no one is hearing me.  My next ENT office visit is a week away.  I am going to try to make them hear that my RIGHT EAR is the one that occaisionally feels full and hot and painful, and the moves at PT for RIGHT EAR BPPV sometimes make me dizzy, but I have doubts if they will listen.

    I find solice in them doing all of the scans and telling me that it is not from a stroke or tumor, so I don't get the panic attack that I read so many have.  I simply tell myself that for the moment I am out of control, but it will come back eventually and hopefullly through internet education and forums like this one I will find out what is really going on.  My thanks to Al Gore for inventing the internet!

    Thank you 

    Ben

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    • Posted

      Hello Ben.

      it really is frustreting that the doctors do NOT listen.Quite frankly I think that they just don't know enough about the condition and that it is all trial and error.

      Nevertheless,the bottom line is that it has not been cured,and consequently it plays havoc with getting on with normal day to day life.Will keep in touch.

      Wendl.

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  • Posted

    Hi Ben,I hope you get some answers soon we are so lucky that we don't have to pay for doctors here,it sounds like you re having an awful time,just know that we are all here to support you x
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  • Posted

    Can anyone explain why some days the dizziness is really intense,and at other times it is still there but much less.

    Today, hardly been able to do anything at all because I feel so unsteady and I am constantly afraid that I will either pass out or collapse ,and that no one will know.

    it is terrifying to feel like this most of the time.I am sure that t am seriously ill.

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    • Posted

      Hi Wendy,I.have the same experiences,this is why I ve ended up with constant anxiety,if you ve had blood tests and scans,you re more than likely to be healthy,my symptoms change daily and jobs I can do today I can t do tomorrow,at the moment I m trying to believe in the theory that the signals to my brain need re training,I still panick,and I ve only been doing them for two weeks but they are helping they re called the cawthorne-cooksey exercises,you can find them online,check with you re doctor first,they are very simple to normal people,after a few days I realised I was doing to many when I couldn't t walk or stand straight( lesson learnt ) I now think about my brain and try and understand that the signals are all confused,it is working so hard to put everything right it s no wonder I can t concentrate and that I m tired.i hope some of what I ve said helps you,it's so scary and its been a long hard 6yrs but now a doctor has sat me down and explain everything it makes more sense,there's a lot of hard work ahead but I m feeling a little more positive.try to keep busy but not rushing around,a snails pace is a good speed 😀keep smiling and remember you re not alone x
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    • Posted

      I'm exactly the same! Some days I can run around and do lots then others I'm so exhausted and dizzy I can barely get out of bed! 

      Things I find help me have more good days than bad are avoiding caffeine, keeping well hydrated, not staying up too late, avoiding alcohol and doing stuff but not overdoing it. 

      My neuro physio said to me that this is like a bruise, stroke it gently and it will heal, keep poking it and it will get much worse before it gets better! So with that she means keep active but DONT push yourself too hard. Hope that helps xxxxx

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  • Posted

    Hi all. I 1st had Acute Labrynthitis back in 2000, I was off work for 6 weeks and barely able to stand/walk for the first 2 weeks. I went throguh all the ENT, CT Scans, Opticians etc before I was finally diagnosed and started taking Serc as prescribed by my doctor. It was certainly a very worrying time.

    As a result of this I now have severe tinnitus in both ears and suffer from regular bouts of Vertigo. I thought that I had the vertigo pretty much under control by cutting out caffine and drinkinig loads of water (up to 4 litres a day). My daily dizzy spells stopped after a few weeks and had no major vertigo attacks for around a year, until Sunday night when for no apparant reason it came back. I was barely able to walk without holding on to anything near me.

    A couple of days on now and it is improving, still feel like I'm walking about on board a ship.

    Unfortunately, during my many visits to the doctor, I have been told (many times) that there is no cure and that I was doing the right thing by keeping myself hydrated as much as possible. Long term medication is also not the answer as apparently I was becoming immune to Serc and others I have tried over the years.

    Sorry i don't have any answers but would certainly suggest that 3 - 4 Litres of water per day.

     

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  • Posted

    I had symptoms of dizziness, loss of balance, numbness in feet and hands. Finally realised that it was a Vitamin B12 deficiency. I'm now taking an iron syrup with Vitamin b12 and folic acid. Also taking a vitamin supplement containing methylcobalamin 1500mcg. Feeling much better in 1 day. Also I reduced the antacids I was taking as this hinders absorption of Vitamin B12
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  • Posted

    Hello, I am going through similar issues. But i have vertigo when looking straight up with my head tilted. I aslo, experience vertigo if I bend over, tilt my head to the side. Similar to bending over to look under a sink but do not bed my knees.i already took the light/eye gogle test. On the part where I layed back and turned my head to the left, I had a few seconds of vertigo. Overall the test was inclusive and now I need a mri. I am worried that this is more than just Bppv. I think he just wants to be sure it is not a tumor. I dont take the mri until Wednesday. What are the chances of having a tumor? Thank you.
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    • Posted

      Hi tommy,I have uncompensated Labythrinitus,in march I woke up and I couldn't t stand or sit up !! The doctor came and said it was vertigo,I was in bed for two days I couldn't t move,on the third day I got up but I still felt terrible,I had the exacte symptoms as you,it lasted three months in which time my doctor suggested i see another doctor in the practice that specialised in ear problems.the first time in six years someone listen to me ans understood my situation,the relief was unbelievable !!! He gave me the Hawthorne cooksey exercises and wow I can now say I feel 70%better,just be careful if you do them don Tory and do to many,I did and I couldn't walk I still only do some of them.i hope this has helped i know how scarey it is,I have anxiety issues because of the hell I ve been through.i know it's easy to say but try not to worry x
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    • Posted

      Hi,no I had a ct scan,I couldn't t lie down long enough for MRI,,the last doctor i saw said it was to do with my brain not receiving the signals right,and the exercises would help help re train my brain that these movements are normal.the exercises bring on the vertigo,I know that's the last thing you want to happen but after six yrs of nothing helping the exercises are the only thing that have helped!! Please let me know how you get on 
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    • Posted

      Hi I do cawthorne cooksey exercises,they do help a little,I was told by a doctor when you re off balance or dizzy for a long time,your movements become very guarded so you stop moveing your neck and shoulders like you normaly would,hope this helps x
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