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41 Male With 24/7 Vertigo And Floating Sensation Off Balance

coil

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coil Newbie
coil
Posted

Hi all I have been really down with vertigo it's been 3 months this time I have had this problem about 6 times in my life it lasts for many months night time is bad with feeling like everything is moving or the main feeling is its like my body is moving and my limbs often feel as though they moving but they are not each night is a battle to get to sleep I move shake my leg or try and watch tv to take my mind off the way I feel, I dont know anything about gluten or celiac could it be just the food I'm eatting or not? I did. The one leg test I carnt stand on one leg with eyes closed any longer than 1 second, I also have feelings of something pushing on my back like a weird force, driving is horrible, doing anything I feel off balance bouncny like my limbs are feeling like rubber, I hate the way I feel, I am now on Prozac for depression and bad panic attacks, but I only been on it for 6 days, does anybody else feel the way I do.

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Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Hi coil

Welcome to the board.

I don't know much about vertigo, but I know there is a condition called gluten ataxia, where gluten affects the brain, and can affect balance.

Gluten can also lead to depression, stress, anxiety and panic attacks in people who are celiac or gluten intolerant. Many people have great relief from these when gluten-free.

Have you considered being tested for celiac? It is worth knowing that you still need to be eating gluten to be tested.

Hopefully someone will be along soon with more ideas.

Kamma Explorer
Kamma
Posted

Morning, coil.

 

Have you ever had what is called vestibular testing?  This usually involves an ENT (Ear, Nose and Throat) specialist and one of the tests is to pour water in your ear and measurement of your eye movements (nystagmus) in response to it.  If the testing was abnormal, then it would show the problem to be your vestibular system in your ears.  If these tests were normal, then the next step would be to look for neurological causes originating in the brain.  

 

Some of the underlying conditions for a neurological cause are:

 

Multiple Sclerosis

Gluten Ataxia

Brain Tumour

Migraine Associated Vertigo

Meneire's Disease

Vitamin Deficiency

Superior Canal Dehisence

 

There is much overlap between Meneire's Disease and Migraine Associated Vertigo.  Vertigo plays heavily in both of them but Meneire's Disease also has tinnitus and some hearing loss.

 

The experience that you described as having is similar to what I went through for about three years.  Horrible, isn't it?  I really empathise with you.  In my particular case, I was diagnosed gluten ataxia and migraine associated vertigo.  I had extreme problems with vertigo, balance, walking properly and seizures.  Migraine associated vertigo  does not mean you feel migraine headaches but that it manifests as vertigo.  Gtuten Ataxia is where the reaction to gluten proteins takes place in the cerebellum (balance centre of the brain) and your body starts attacking the Pukinje Cells that make up the cerebellum.  I've been on a grain free/gluten free/processed food free diet regime for a year and a half and I am now back to normal.

 

I would strongly urge you to try and get tested for the above conditions if you have not already done so.  If there are obstacles in obtaining testing here are some websites that would help in determining the direction you think you should go.  

 

Meneire's Disease Forum

Open Original Shared Link

 

Migraine Associated Forum

Open Original Shared Link

 

Dr. Timothy Haines (North American Renowned Neurologist who works with balance disorders)

Open Original Shared Link

 

The Gluten File (a depository of research articles on gluten ataxia, gluten sensitivity, neurological manifestations of gluten reaction, etcetera)

Open Original Shared Link

 

and of course, here at celiac.com

 

Hope this helps in some way.  Please do remember, that with proper treatment, the vertigo will go away.  You won't be stuck like this forever!  It might take some diligence on your part at the beginning to start digging and figuring out the causes and what you can do to manage it, but you have already started that process by asking here.  :)  Vertigo is not a forever thing and it pays to keep that in mind when you're having a really crappy day and can hardly walk without holding on to walls and you feel your life crashing in on you.  

 

You'll get better.  Keep holding onto that.  :)

 

Kind regards,

Kamma

greenbeanie Enthusiast
greenbeanie
Posted

I was hospitalized for severe ataxia and other weird neurological symptoms a few years ago, with some symptoms that sound similar to yours. I'm female and was about 35 at the time. The doctors first thought it was MS, but they did two MRI's and both were normal. I couldn't walk down stairs and had to hold the wall while walking down a straight hallway, my vision was weird and it kept looking like things were suddenly popping up in front of me, my coordination was gone and I couldn't even hold onto a toothbrush, etc. It was extremely distressing, and I was seriously scared that I was dying and no one could even figure out what was going on. My vestibular tests were normal (which still baffles me), even though they observed that I couldn't even stand up and walk straight. I experienced the same feeling you mention, like a weird force was pushing down on my body. When I tried to explain that to the doctors, they started treating me like I was crazy. Two different neurologists were very concerned at first, but as soon as my MRI came back normal they discharged me from the hospital and told me to follow up with my PCP. My PCP said I should be happy that I didn't have MS, and that I must be having one long, continuous anxiety attack for weeks at a time (!), and sent me away with no help whatsoever. I tried anxiety medications briefly (though I knew that wasn't really my problem), and it made things even worse.

Anyhow, I eventually figured out myself that an insomnia medication (Ambien CR, before they lowered the recommended dosage for women) was causing the acute symptoms. All the doctors knew I was taking it, and they'd insisted that I keep taking it while in the hospital because it can be dangerous to stop suddenly. Well, once they discharged me and my own doctor was no help, I stopped anyhow. Lo and behold, I could walk again within two days! To be clear, I'm not saying that anyone should suddenly stop any medication against their doctor's advice...just that sometimes doctors are really clueless, and unfortunately it's up to the patient to question everything they're told if symptoms continue and the routine tests aren't providing answers. My PCP and the neurologist were both very, very sheepish when I went back later and told them what the problem had been.

On a broader note, I'm quite sure in retrospect that the underlying cause of my ataxia was gluten, and the medication just worsened it somehow. The loss of coordination (trouble with buttons, running into door frames, opening cupboard doors into my head) had started a few years earlier and persisted for years after that episode. I just tested negative for celiac recently, though I'm not totally convinced that my results were accurate because I'd been gluten-light for many years. I've been gluten-free for five weeks now, and I am starting to notice the clumsiness lessening (though it's definitely not gone yet). Also, 20 years of insomnia - as well as soaking night sweats and many other horrible symptoms - went away completely after stopping gluten!

Sorry for the rambling response...I guess my main point is that there may be a relatively simple explanation for your problems, even if things are really dreadful right now. Had you started any other new medications in the months prior to this? Taken any new vitamins? Started any other new habits (switching what you eat for breakfast, or that sort of thing) recently? I'd gotten in the habit of having a bagel for breakfast in the months prior to my ataxia hospitalization, which was unusual for me because I didn't normally eat bread every day. I never made any connection to gluten at the time, but in retrospect everything is always clearer...

I really hope you're able to get to the bottom of this soon. Hang in there, and if possible try to find a friend or family member who can go to the doctor's with you and advocate for testing until you get to the bottom of this.

tarnalberry Community Regular
tarnalberry
Posted

Hi all I have been really down with vertigo it's been 3 months this time I have had this problem about 6 times in my life it lasts for many months night time is bad with feeling like everything is moving or the main feeling is its like my body is moving and my limbs often feel as though they moving but they are not each night is a battle to get to sleep I move shake my leg or try and watch tv to take my mind off the way I feel, I dont know anything about gluten or celiac could it be just the food I'm eatting or not? I did. The one leg test I carnt stand on one leg with eyes closed any longer than 1 second, I also have feelings of something pushing on my back like a weird force, driving is horrible, doing anything I feel off balance bouncny like my limbs are feeling like rubber, I hate the way I feel, I am now on Prozac for depression and bad panic attacks, but I only been on it for 6 days, does anybody else feel the way I do.

 

There is also "benign positional vertigo", which is caused by crystals in the ear dislodging.  A chiropractor can help, or anyone who knows the maneuver to help clear them (and you can learn to do it yourself).

 

(You'll probably get a lot of "it could be this" sort of thing - good luck figuring out what YOUR answer is!)

AlwaysLearning Collaborator
AlwaysLearning
Posted

If you want to start with simpler possible causes, allergic reactions in general will affect the ears, causing pressure from swelling. But if you're already gluten-free for a while, that should have eased up already.

Iron deficiencies also cause dizziness so a simple blood test could rule that out and look for other possible deficiencies from malabsorption while you're at it.

  • 2 months later...
ravenra Rookie
ravenra
Posted

@Coli, Did you ever learn more about this?

 

 

Hi all I have been really down with vertigo it's been 3 months this time I have had this problem about 6 times in my life it lasts for many months night time is bad with feeling like everything is moving or the main feeling is its like my body is moving and my limbs often feel as though they moving but they are not each night is a battle to get to sleep I move shake my leg or try and watch tv to take my mind off the way I feel, I dont know anything about gluten or celiac could it be just the food I'm eatting or not? I did. The one leg test I carnt stand on one leg with eyes closed any longer than 1 second, I also have feelings of something pushing on my back like a weird force, driving is horrible, doing anything I feel off balance bouncny like my limbs are feeling like rubber, I hate the way I feel, I am now on Prozac for depression and bad panic attacks, but I only been on it for 6 days, does anybody else feel the way I do.

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