Dizziness....but not dizziness.....

[Nat79]

Hi there. I have been feeling constantly dizzy for about 4 months now....well when I say dizzy its more a feeling of my brain floating in my head, a feeling of lightheadedness which sometimes makes me feel quite 'spaced out' and like im drunk/drugged (when I havent drunk alcohol or taken any drugs!). Sometimes my eyes feel like they are really fighting to focus, dont get me wrong my vision is fine, it just feels like everything is more of an effort. Sometimes the dizziness is not too bad, and sometimes it gets much worse but there doesnt seem to be any triggers to it.

I have had an MRI which came back normal. My Neurologist has now written me off and is referring me back to my doctor so as he can refer me to a Neurootologist.

I would like to know if anyone has had any similar symptoms and also suggestions of things it could be would be greatly appreciated.

[Nat79]

Ok, took the Bethahistine for a few days and about half an hour after taking each tablet I felt so much worse, so I have now stopped taking them and am going to phone the doc to tell her.

I am not sure I agree with them giving me random tablets to see if any make me better coz what if whatever they are giving me makes it worse long term? Surely giving me random tablets when they have no idea whats wrong with me isnt the way forward??

[Deej70]

I forgot to add that I've had one brain MRI that showed one small lesion.  

[Deej70]

My PCP and neuro both mentioned my dizziness (and other symptoms like numbness, tingling, fatigue) could be due to a virus.  They have ruled out most other major things like lupus, thyroid, Lyme so far.

[Clark5]

Hello:
It has been a long time since I have participated, excuse my negligence.
When I read your question I had to respond.  I too have this feeling, and did describe it as a drunken feeling/dizziness.  I have has this on and off for 8 + months.  The neurologist and internal medicine physician are just watching me and giving me medications.
To back up some, I have the diagnosis of CIS at this time.  Although, on some of my medical documents the diagnosis is MS.  I am on no therapy at this time.  I am being watched closely.  Back to the dizziness, I feel for you, for me this is disturbing because it disturbs my since of balance, and at times I feel nauseated.  I believe that this symptom is associated with MS.
I hope that you loose this sensation soon.
Regards
Clark5

[Nat79]

Thanks for your post. Yeah the dizziness, constantly feeling a bit drunk/drugged is really tiring...and the annoying thing is I look fine visually and people forget that my head feels like a washing machine inside!!! Luckily I dont feel nauseous with it (as I believe some people do).
I hope you dont mind me asking but I see you have no dignosis....what tests have been done on you so far? And have the doctors suggested other things your symptoms could be?

[Deej70]

I have no diagnosis at all right now, but the dizziness I had last month was the absolute worst symptom for me. It wasn't constant but off and on.  It felt like I was rocking on a boat...kind of floating and I couldn't get my balance when I crossed a room. Something I can't really describe and I've never felt that way in my life.  I can live with tingling and stuff, but that dizzy feeling spooked me to no end.

[Nat79]

I have been to the doc again today and she is referring me to a top Neurology Hospital in London. She has also put me on Bethahistine and was concerned that the other doctors had not tried me on different tablets before to see if they help and she was really sympathetic to the fact that I hadnt driven since the symptoms started back in May, so I am feeling better that I have found a doc who is listening and who is going to refer me to a specialist hospital and is trying me on some drugs!!!! Yay!!!

[alicetinker]

Hi

Poor you!

That is the vertigo-feeling of spinning or tilting.

It is horrible and this feeling will make you feel nauseous.

You can ask your GP about motion sickness tablets if the vertigo continues...

Alice

[Nat79]

Thank you all so much!

Another symptom which i havent had before, which started last night is that the room was spinning, really badly, like i was drunk and I felt a bit nauseous. I have the same today but its not as bad - does anyone else get this???

There doesnt seem to be anything which makes my lightheadedness better or worse, although being really tired makes it a bit worse.

[MCBCON]

a light headedness symptom is a normal symptom for someone with neurological problems.  I have MS and it is with me most of the time.  I find that plenty of water or  tylenol can help.  Also, sitting helps a lot.  Once in a while sitting does not help then I lying do on my stomach with my head and chest somewhat raised also works wonders.

After resting a while I can get back to more vigorous efforts such as walking.

[alicetinker]

Hi Nat

Sorry you are feeling unwell.

I was dx'ed with peripheral vestibulopathy after an onset of profound vertigo. The anti motionsickness tablets I was on helped with the symptoms.

I was also referred to an oto-neurologist but the referral came when I had been 4 months without an attack of vertigo. They ran vestibular function tests which came back within normal limits.

I am no expert but have (hopefully) learned a thing or two about this ;^) Perhaps this will help when you see the oto-neurologist:

*A timeline of your symptoms


*History of present illness:

- when do the symptoms happen? when you are upright? lying down? turning over in bed?

-does anything make the symptoms worse like tilting your head or position changes?

-are you suffering from vertigo (spinning), or postural imbalance such as falling over or    listing into walls?

-any hearing problems? Any ear problems such as fullness or ringing in the ears?

*Try and be specific about your symptoms:

-are you suffering from nausea/vomitting?

-be as specific about your visual disturbances as you can...do you wear glasses? is the    visual disturbance improved if you don't wear them? any difficulty seeing in the dark?

*Headaches?

*Are the symptoms constant or do they come and go?

Dizziness and vertigo are horrible. I hope you feel better and get some answers soon.

Good luck!
Alice

[jensequitur]

Yeah, usually people pay to feel that way!  It's a lot less fun when you can't control it.

[legendary50]

Hi there Nat,
I am new to the forum too..and my symptoms started on the 8th of Aug. just like your's. Mine got progressively worse and I ended up in the ER.they thought I was all tripped out on drugs. and didn't help when the doc ask me if I was on drugs, that I burst out in obnoxious laughter!  since then I have been experiencing what you say as foggy headed or feeling drunk or medicated..I am terrified to drive..it's like everything is moving to fast or to loud and I can't put the pieces all together..just wierd..good news is my 2nd mri of brain and neck is tomorrow...so we shall wait and see..hang in there. I haven't been able to work either..I just want to feel like I did the morning of Aug. 8th!  
keep in touch!

Jerrie from Texas

[jensequitur]

Nat, I've had MRIs of the brain with and without contrast, (1.5 Tesla) as well as a lumbar puncture.  The MRI showed a definite lesion in the cerebellum, which along with my positive results from the LP, seemed to be enough to diagnose me.  (Probably my timeline of symptoms helped, too - I was able to talk about how my symptoms started, and how they changed.)

[Nat79]

Thank you so much for replying, its so good to know there are others out there feeling just as strange!!!

I am being referred to a Neurotologist, which deals with balance, not sure if they are able to test for autoimmune things....any ideas?

I have had blood tests which all came back ok. What other tests have they done on you?

[Want to feel well!!!]

Welcome here!  Sorry you have had to seek out the help via this forum, but maybe this will help you find the answers you need.

My dizziness sounds much like yours.  I have had it for almost 5 years now.  Andi's suggestion for a rheumy is good and also perhaps an ENT as well to rule out inner ears problems.  Vertigo is a tough one.

My vertigo has been call "disequilibrium" as it is not a spinny vertigo, and it seems as though it has been caused by inflammation caused by an autoimmune disorder.  The medication I have been taking (for the autoimmune thingy) is the only thing that has helped in all this time.

Best of luck to you!  Keep us posted...
Wanna :o)

[jensequitur]

That sounds very much like me, too.  I started out with some vertigo and a drunken feeling, and had a hard time focusing.  Hard to say at this point with a normal MRI.  Just curious, Nat - was the MRI on a 1.5 Tesla machine or higher?  And was it done with and without contrast?

[Wobbly]

that was something like what I had at the beginning of my symptoms..I still have it and it comes and goes..

I'm not yet Dx and have my off balance days...it feels like my head is floating and my eyes want to move in separate ways etc.. my head just doesn't work right..

I hate those days and tell myself it does go away...even temp..
I'm still seeing a Neuro and have had all sorts of testing...

have you been to a Rheumotologist...checked for autoimmune things yet?

blood tests?

Good luck and keep us informed
andi