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Vestibular migraine: What symptoms do you experience?

Posted by klhe @klhe, Aug 12, 2018

good day members,

Johns Hopkins diagnosed me with vestibular migraine a little over one year ago. Prior to that no one knew what I had and I saw ENTs, neurologists, and many other Dr.s. MRI of close to two years ago shows all is normal. However, despite a respite of feeling almost normal for three months while taking a new medication (Effexor extended release at 75mg.) all of my symptoms came back full force for what I call episodes, at least once a week, and lasting up to three 3 days in bed. My symptoms for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue. I can feel like a pressure in my head at times. I have not lost cognitive functions: that only occurred when I took Topiamate. My internist wants me to see a specialist at the Mayo Clinic, but I wonder if anyone else has experienced what my Hopkins Dr. calls very atypical VM symptoms?

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brenda1944 | @brenda1944 | Jan 25 3:44pm
In reply to @greene1998 "In december i had high stress and anxiety about my job and other personal stuff in..." + (show)
Profile picture for greene1998 @greene1998

In december i had high stress and anxiety about my job and other personal stuff in my life. I started notcing my eyes would have a hard time tracking movement, wne in motion my left eye would slowly drift to the left i couldnt focus oand had convergency issues. Sweets and cocolate started making my eyes sensitive to movement aswell. i caught the Flu in january and sinus infection followed by a another cold all in january. and new symptoms arised from all that mess. foods started causing internal trembling sensations and movement sensations in my head and music/sound of own voice started causing the sensations and a feeling of disquilibreum in my body. New symptoms would arise each month limiting my life
Traveling would change my bowl habits, being in motion would case my movement sensations and soon looking at screens at phones causing symptoms aswell.
I did vng and it revealed 45% weakness in left ear with cold caloric test. CT and MRI scans were all normal. VNG changed how my movement sensation functioned into full on spinning and feeling like im traveling or on a boat or rollercoaster. Neurologist suggesting vm or dysautonomia/ ppd still figuring it out she said. at this point only rice and eggs arent causing smptoms. Noticed im getting temperature regulation issues and feeling like something crawling on my skin to feeling a pulling sensation in my legs when i rest and feel the sensations. These sensations are constant.

What could this be?

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@greene1998
Sound a little like me.I have Occipital Neuralgia. Sudden lightening bolt pain strikes one side of head or other. They leave residual pain behind. It makes you grab your head and cry out.I take 2 400 mg magnesium gummies at night and a B1 pill . It has cut the attacks I think.
I also have severe dizzy spells and lightheadedness. I take Meclizine every night and morning. Also in between I use a natural pellets by Boiron east to melt under tongue. Also could try Liddell drops for related things. Like ear pain…
I find it frustrating trying to explain my issues to a doctor. In the E.R. you’re just hooked to a monitor and get C.T. or MRI scans
My eyes bother me too. I think it’s all related. For five years I’ve battled with this. Just being home and having medical appointments every single month. So now I have terrible anxiety. As Green1998 said that inside trembling. Strange symptoms all around. Physical therapy is useless They have no idea what you’re talking about..Maybe I’ll try acupuncture.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jan 26 8:49am
In reply to @brenda1944 "@greene1998 Sound a little like me.I have Occipital Neuralgia. Sudden lightening bolt pain strikes one side..." + (show)
Profile picture for brenda1944 @brenda1944

@greene1998
Sound a little like me.I have Occipital Neuralgia. Sudden lightening bolt pain strikes one side of head or other. They leave residual pain behind. It makes you grab your head and cry out.I take 2 400 mg magnesium gummies at night and a B1 pill . It has cut the attacks I think.
I also have severe dizzy spells and lightheadedness. I take Meclizine every night and morning. Also in between I use a natural pellets by Boiron east to melt under tongue. Also could try Liddell drops for related things. Like ear pain…
I find it frustrating trying to explain my issues to a doctor. In the E.R. you’re just hooked to a monitor and get C.T. or MRI scans
My eyes bother me too. I think it’s all related. For five years I’ve battled with this. Just being home and having medical appointments every single month. So now I have terrible anxiety. As Green1998 said that inside trembling. Strange symptoms all around. Physical therapy is useless They have no idea what you’re talking about..Maybe I’ll try acupuncture.

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@brenda1944 - welcome to Mayo Clinic Connect. Sorry you've had all these symptoms and also anxiety, which seems like a logical outcome of all you've gone through.

I hope you find some relief with the acupuncture.

Anxiety can be debilitating, from what I've seen in my own life. I take an anti-anxiety medication daily.
Have you been diagnosed with an anxiety-related diagnosis or prescribed medication for that?

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