state of confusion

[banjo67]

I am literally in a state of confusion.  Here's my story..about four years ago I had a severe veritigo attack..had mri and other tests.  Diagnosed months later with Meneire's.  Vertigo was mainly under control.  Last June I was hit again, so bad that I couldn't get off the floor.  Since then I have suffered brain fog, a sharp pain in the corners of my eyes, cold hands and fingers, inability ot think, exteme unbalance, blurred vision and constant vertigo.  I have had eply's, rehab, and have been told I have migraine assaciated vertigo.  I have been on an organic diet for the past month.  Although the symptoms seem to subside and then return, I have managed to lose some weight I still feel run down and dizzy.  Two of my cousins have been diagnosed with MS and I am really wondering if  I do too?  Can someone help me and point me in the right direction?

[Deb61]

I do have what I call "head twirlies".  I get them out of the blue and when I don't move my head--sometimes when I'm just sitting still.  I hate it.

What you've described with the arm and hip pain I don't think is related to Meneire's. The mental confusion needs investigation.  You do need to get to the bottom of what's causing this.  Your doctor needs to listen to you, and if he's not, you should see someone else.  What you are describing appears to be out of his realm of expertise, but he should have told you that.  

I am taking a disease modifying drug called Copaxone.  I took Nortriptyline years ago when I was misdiagnosed with fibromyalgia.  

I teach, too, so I know how hard it is just to teach.  When you add in health issues it really does make it hard.  

I would set up the appointment with the neurologist, and if that specialist doesn't listen, find one that does.  There's lots of us on this forum that have been through the same thing.  Hang in there!   Deb

[banjo67]

Thanks to both of you for your explanations.  I have not had the full battery of tests that was described.  Mass eye and ear's Dr Rousch is a specialist with MAV and vertigo but he did not run any extensive tests.  Basically took my symtoms and then gave a dx.  Rendean can you tell me more about your symptoms?  If MS causes these symptoms I would like to know more.  What kind of med are you on? Norotriptilyne?  My head feels like I am in a fog 24/7.  I have blurry vision. pins and needles that come and go along with hip and lower arm pain. Whenever I look or tilt my head back and to the right my head whirs and the world spins. My right ear hums and it is super sensitive almost feels like something is crawling around the perimeter of it.  Very bizarre feeling.  The mental confusion is really taking a toll.  I teach and I often find myself reversing theorder of the  letters or just spelling simple words wrong.  You don't know how many times I had to check my spelling so far! It's mindboggling!
Thanks again
Banjo

[rendean]

Quix: Thank you for the explanation regarding the extra work that vertigo places on our bodies.  That explains a  lot of my problems.

Banjo: I have migraine associated vertigo AND CNS vertigo due to MS. I had all the tests Quix mentioned. Epley maneuvers, the whole kit and caboodle. I saw my MS neuro and a neuro-otologist to receive the final diagnosis. The symptoms in my case are only subtly different between the migraine and the central vertigo but the dx of CNS vertigo was needed to achieve disability. I can tell when my migraine med will clear the vertigo and when it's time to hit the bed and ride it out. Wishing you luck!!

My oldest daughter gave me a T shirt that reads: Vertigo : Laying on the floor ...holding on tight. Yes, it's "sick humor" but at least she understands and gladly helps me through the episodes.

Ren

[Quixotic1]

I agree that you should see a neurologist with your concerns.  We "do" know when something is not right with our bodies.  

I do want to say something about the profound effect that vertigo has on one's life.  Because vertigo means that one's balance mechanism is on the fritz, many people don't realize that the eyes have to pick up the slack in keep us upright.  We begin to use our eyes to keep us steady in space and this causes a huge amount of mental exhaustion.

When we use our eyes to stay upright and steady, it uses the conscious mind.  This causes problems with memory, word retrieival and other language areas.   It makes you feel sick overall. Because of the overuse of the eyes, it can cause problems with visually busy environments and brief episodes of double vision.  I had chronic vertigo for about seven years before my MS showed up.  My private doctor was Dr. Epley of the Epley Maneuvers.

Was the doctor at Mass Eye and Ear a specialist in vertigo?  Did you have the full testing with VNG, Posturography, ElectroCochleaGram and such?  If so, then my recommendation to see such a specialist has already been done.

Still, you should exhaust all avenues looking for the cause of this.  Meniere's can cause most of what you are describing.  The high-stress state of being chronically vertiginous can cause the cold hands, which is the only symptom you listed that isn't a part of chronic vertigo.

I agree that you can ask your primary care for a referral to a neurologist.  Even though the ENT feels he has the answer, a second opinion is your right.

Quix

[Lulu54]

Most neurologists want a referral to see them from another doctor.  Would your primary care physician be willing to do that?

At the very least, talk to your doctor about your concerns and ask for the referral.  

If you know something is wrong with your body, there probably is something wrong.  Its just going to take time for the doctors to find it.  

my best,
Lulu

[banjo67]

Thanks for the post..I know something is not right

[jensequitur]

I would go to a neurologist.  If you feel like something is wrong, it's wrong - don't let your ENT doc tell you that it's unnecessary.  Even if it is migraines, then the neuro will be able to tell you what to do next.

[banjo67]

Thanks for the reply.  I have not been to a neuro and want too but my ear nose and throat dr thinks I don;t need too because Dr. Rouch of Mass eye and ear thinks it is Migraine associate vertigo even though I have never really had a migraine.  I jut don;t know where to go from here.

[banjo67]

I have not been to a neuro.  I ended up seeing a Dr. Rouch of Mass Eye and Ear and he told me MAV.  Wants me to take noretryptyline which I have read about and really don't want to take it.  I have had a full blood test panel and everything checks out.  The thing is I have had two mri's in the last five years and both without contrast and about twenty minutes is what it took to complete the tests.  I'm not all that sure about this migraine associated vertigo.  I have seen a neuro chiropractor and he said it has to do with my cortex and that basically the right side of my brain is shutting down.  I know I am not feeling right and this dizziness is constant.  I want to see a neuro but my ear nose and throat dr doesn't think I need too anymore because of what Dr. Rouch said.  I just don;t know where to go with this.

[Lulu54]

Hi and welcome to the forum.  Deb is so right, seeing a neurologist would definitely be in order.  The migraines should be investigated a bit further.  

The fact that two close relatives have MS is also a good reason to be checked.

I hope you'll come back and ask all the questions you want.  We're a pretty friendly group.

be well,
Lulu

[Deb61]

Have you been to a neurologist?  It could be another attack of Meneire's, but it's always good to rule out central nervous system problems.  However, it could be anything and it may not even be neurological.  A good neurologist should be able to help you though.  Who knows, something could show up on a blood test that there's an easy remedy for.  Plus, if a doctor is saying migraine attacks, that's another reason to see a neurologist.  

Best wishes,
Deb