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

I’m a 28 year old male and have been dealing with this for over 2 years now.

I am on amitriptyline which seemed to help but I’m at a 50mg dose and it’s come back and now in my second week of feeling totally out of sorts with the dizziness and spaced out feeling again.

I have been for CT scans, MRI’s on head, Lumbar puncture but nothing has shown up, I saw an ENT for 10 minutes and he fobbed me off saying it was headache related and nothing he could do. I’ve now got Health Anxiety because of this condition which has grounded me for 2 years now.

I’m convinced it’s ear related and my sinuses are involved somehow.

 

This all started with a dizzy spell in my bed one night and since then it’s had it’s hold….I developed permanent tinnitus a month after this started too.

 I’m not sure what else I can do to get better since I can’t (or rather doctors) cant work out what is actually wrong with me.

Ho dizzy, and everyone else on this discussion, what an absolute relief to see others putting their experiences of this put there. I have just got to share mine, in the small hope someone has anything to add but also in the hope someone finds relief in reading it as i have all yours......

9 years ago I went out drinking and came home amd got into bed, as I was relaxing waiting to sleep I felt a physical shift in my head, like a wave crossed it. I thought not much of it amd slept. I woke to dizziness/lightheadedness with absolutely no vertigo or balance issues. It stayed with me 24/7 for around 4 to 6 weeks amd then tapered off amd disappeared over the space of 3 to 4 days.

Skip forward to end of march 2015 amd the exact same thing happened! Same scenario everything. Now on each occasion I was not blond drunk, just tipsy, no being sick or anything. It started to taper off again after 2 weeks! I was overjoyed. My eyes still felt heavy bit I wasn't dizzy or lightheaded anymore. Stupidly I went out for a drink again and the same thing happened again, and here I am August 2015 and still suffering. As it didn't go away I got the anxiety onslaught. I went on citalopram for 6 weeks which gavee such bad insomnia they took me off it. I can't go on another ssri as apparently the same will happen. And if I take another anti anxiety it is sedating which I do not want to take incase I don't ever compensate.

I had all the tests, mri, all bloods, vitamins etc. Buty balance and hearing test results came through today amd there is an abnormality! I called my ent consultant and sure enough he wasn't there and they don't discuss the details without an appointment. Ok I said can I make am appointment. Yes you can it ten weeks wait! WHAT?!

Ok so I've spent all day trying to get over this awful not knowing what it is news and now I have to wait for my physio appointmwnt to come through to get on with the exercises. But there is an abnormality.

Naturally I'm thinking great this is never gonna go away now it's been here too long....5 months. And I read some people have suffered years! We have got to be some of the strongest people on the planet haven't we?! We need a huge pat on the back for having to go through this. Noone knows how bad something can feel until you are told that they do not know what is wrong with you. And in my case now, that there is something buy I've not been told yet.

Anyway... My symptoms in there entirety are...

Constant 24/7 dizzy lightheaded feeling, never any vertigo episodes. Woozy and heavy eyed, exhausted, sleep more, lack of concentration, mild tinnitus in left ear, heart beat heard in my right ear. White noise (low level) bad memory, lack of appetite and anxiety and depression only as a result of this tedious disease.

Any thoughtsessages etc are more than welcome. I have just cancelledy smear holiday as just do not feel up to it at all die to the anxiety etc. And I feel very frustrated.

Thanks for reading....

Oh amd I forgot (surprise surprise) I have waves feeling behind my nose and mild head pressure.

Your symptoms sound somewhat like those of Lyme Disease.  You may want to go to a Lyme Disease Specialist to obtain a diagnosis.  Latent Lyme is difficult to diagnose, but, some doctors have made it a life study to diagnose and treat patients.  I have read where some people who pursued their symptoms found s doctor who found their cause to be Lyme Disease.  I have personally spoken to someone who had symptoms for 8 years undiagnosed and had memory problems as well as some of the other symptoms you describe and was diagnosed by a Lyme Specialist to have latent lyme disease.   This individual said the doctor identified her condition; treated her and saved her life. 

I am pursuing this as I have similar symptoms as you except not the memory loss.  I have been to numerous doctors and had numerous xrays, MRIs and blood tests without a diagnosis other than Gluten Sensitivity, Ciguatera fish poisoning which neither panned out. 

Hope this helps.

Hi Debs, I have a lot of those feelings and you have my sympathy. I came to this site because I did a search on feeling lightheaded constantly and was amazed to see your post as well as several other posts. I have had this feeling on and off with varying intensity for the last 34 years. 

As I've come here and noticed that your post is from a year ago, are you still feeling this? Prior to feeling this, did you have any sudden dizzy spells or illnesses? 

I've been diagnosed (after 11 years of seeing doctors and being told many things) with panic attacks. Ever since my first panic attack in 1981, something was never "quite right" ever again. Something happened to my balance as well, which affects me to this day. I've become agoraphobic as well. Even though I have been diagnosed with panic disorder with agoraphobia, I cannot forget that panic attack which happened on Novermber 28th 1981 (I'll never forget it as it changed my life forever). But the one thing I recall was that I heard a sound in my right ear and then I immediately got violently dizzy. So even though I know what I have, the balance thingy has always bothered me and to this day, I am still convinced that there's something wrong there which nobody can point out. I have heard that there are certain problems with the inner ear that cannot be diagnosed or will not show up in an MRI or CT scan or what not. 

I've had the most unreal feelings when I first got this. Bobbing, swaying, sitting straight but feeling like I'm sitting at an angle, whizzing through the air when I close my eyes. When I went to bed, it felt like my head was on the pillow and my feet were in the air and vice versa. 

Anyways, I hope you're better and I hope to read some other posts that might help me as well. I'd given up and I've decided to give it one last go.

I'm wondering if there's anyone else here who had this but managed to beat it. If so, what did you do?

Only just seen this so don't know whether you have now found a resolution to your problem.  I hope so because I understand how worried you must be as I too have had this dizzy, 'spaced out' feeling for over a year and yet blood tests and consultations with neurologists and ear, nose and throat specialists can find nothing wrong,  I sometimes feel I can't go on like this but then I don't know what else to do. If you have found a cure, please let me know. 

In the meantime, best wishes.

Hi Debbie,

Hello to all the others who have contributed to this discussion to.

Sorry to hear that you have had to put up with this horrible feeling for such a long time. I can only hope you are feeling better (as I notice this was posted over a year ago). I can definitely relate as my experience with this dizzyness is identical to yours. And it's so frustrating that a large number of us are going through this with still no real diagnosis or treatment for it.

Here's my story: I'm 35 years old and have had this feeling of dizziness for 2 years and 4 months to be exact. The fitst initial experience of it lasted a couple of weeks and then it disappeared. I felt unsteady on my feet, balance not quite right and found that my posture would lean more to the right, then left. When sitting down I would be leaning more forward, or felt as if I was sinking too far down on the sofa or just not sitting up right. Whilst sleeping I felt as if my body was sinking too far in the mattress and I felt uncomfortable laying on my side because I