Report of appointment with Dr. Staab (Mayo Clinic)

Specific Illnesses & Conditions VM/MAV
1

I had an appointment with Dr. Staab at the Mayo Clinic in Rochester, MN this week. He diagnosed me as “probable vestibular migraine” as well as chronic subjective dizziness (CSD).

I had two main objectives for seeing the specialists at Mayo Clinic. First, to get a second opinion on whether there might be some other neuro-degenerative problem going on, because I’ve gotten much worse since first getting dizzy spells nearly five years ago. I now have daily dizziness/balance/vision symptoms, punctuated by multiple room-spinning vertigo episodes per week. My second goal was to question to the migraine diagnosis because I find it hard to believe that I am having a constant migraine every day.

Dr. Staab told me that there was general agreement this summer between headache neurologists and neurologists and oto-neurologists that focus on dizziness on a definition of vestibular migraine that includes many of the vestibular symptoms we experience alongside traditional migraine diagnostic criteria–most specifically, headache. Because I do not have headache, but fit other criteria, I would be classified under the new criteria as “probable vestibular migraine.” The development of this new criteria in conjunction with the International Headache Society should be a good thing for raising awareness of vestibular migraine among neurologists generally.

According to Dr. Staab, CSD and vestibular migraine occur together in about 1/3 of patients. In his experience, 4 our of 5 CSD patients recover fully from these symptoms. He is currently doing research on how to handle patients with both vestibular migraine and CSD. In particular, he discussed the idea that the two conditions are interactive: vestibular migraine leads to CSD and CSD in turn makes one more susceptible to migraines. Because these two conditions can be treated with medications with different pharmacological effects, he is studying whether it is best to treat them sequentially or at the same time.

I will be participating in a 12 week medical study called “Pharmacologic Dissection of Vestibular Migraine and Chronic Subjective Dizziness” in which each patient will receive either Verapamil (believed to have stronger effects on symptoms of vestibular migraine) and Sertraline (believed to have stronger effects on symptoms of CSD). The goal is to learn more about the key features of VM and CSD and get better ideas about their possible causes and to develop models to help diagnose and treat them better.

Overall, I’m pleased with my experience at Mayo and Dr. Staab in particular. I was happy that he didn’t pigeon me in the CSD category, but really took time to explore my full range of symptoms. I am less worried about having something more destructive than migraine and feel that the combined VM and CSD diagnosis makes more sense than VM alone. I am also optimistic that by treating the CSD with a combination of medication and physical therapy, that my condition will start to unwind from the worsening symptoms I’ve experienced over the past couple years.

Before I left, he gave me copies of two review articles he has written that provide an overview of the history of vestibular migraine and CSD. I don’t have the ability to scan them into PDF, but perhaps someone with access to PubMed or something could do so. I think they are helpful.

Clinical clues to a dizzying headache, Jeffrey P. Staab, Journal of Vestibular Research 21 (2001) 331-340

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Abstract:
Recent years have witnessed an upsurge of interest in migraine as a cause of vestibular symptoms. Starting with 1970s case reports linking migraine to childhood vertigo, neurotologists worldwide have increasingly diagnosed migraine. Various syndromes of vestibular migraine (VM) have been described, diagnostic criteria proposed, epidemiologic data collected, and neurophysiologic models developed. Yet, the concept that migraine causes vestibular symptoms rests on a surprisingly thin research database. Current concepts of VM are based on expert opinion, not empirical data. No general consensus exists about the definition of VM. No studies have analyzed its essential features. Just one well-controlled medication trial has been published. No biomarkers are known. To stimulate more rigorous research, this paper poses three questions about clinical investigations into migraine and vestibular symptoms: What variables should be measured? What patients should be studied? How might clinical trials yield both clinically useful results and greater insights into pathophysiologic processes? Using these questions, the limits of current knowledge are explored. Applicable research methods from epidemiology to genetics are examined. Pilot data demonstrating pharmacologic and genetic dissection techniques are presented. Ambitious, but practical, near-term clinical research goals are enumerated, including rigorous validation of diagnostic criteria and development of empirically derived management guidelines.

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**Chronic Subjective Dizziness, Jeffrey P. Staab, Continuum: Lifelong Learning in Neurology–Neuro-otology, Volume 18, Issue 5, October 2012
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http://www.aan.com/elibrary/continuum/?event=home.showIssue&issue=ovid.com:/issue/ovftdb/00132979-201210000-00000

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Abstract:
Purpose of Review: In 1986, the German neurologists Thomas Brandt and Marianne Dieterich described a syndrome of phobic postural vertigo (PPV) based on clinical observations of patients with nonvertiginous dizziness that could not be explained by then-known neuro-otologic disorders. Subsequent research by an American team led by Jeffrey Staab and Michael Ruckenstein confirmed the core physical symptoms of PPV, clarified its relationship to behavioral factors, and streamlined its definition, calling the syndrome chronic subjective dizziness (CSD). This article reviews the 26-year history of PPV and CSD and places it within the context of current neurologic practice.Recent Findings: Recent investigations in Europe, the United States, Israel, and Japan have validated the primary symptoms of CSD; identified its provoking factors and precipitants; elucidated its long-term clinical course, differential diagnosis, and common comorbidities; developed successful treatment strategies with serotonergic antidepressants, vestibular habituation, and possibly cognitive-behavioral therapy; and raised new hypotheses about pathophysiologic processes that initiate and maintain the disorder. In tertiary neuro-otology centers where it is recognized, CSD is the second most common diagnosis among patients presenting with vestibular symptoms.Summary: A quarter century of research has established CSD as a common clinical entity in neurologic and otorhinolaryngologic practice. Its identification and treatment offer relief to many patients previously thought to have enigmatic and unmanageable cases of persistent dizziness. Internationally sanctioned diagnostic criteria for CSD are under development for the first edition of the International Classification of Vestibular Disorders, scheduled for publication in early 2013.(C) 2012 American Academy of Neurology

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2

Wow - interesting and encouraging. Thanks for sharing…

3

I think its great to have more info on CSD on this forum. I was originally a good case for CSD because I had no headaches until recently, I tried Paxil but it made no effect on me. I wonder if Sertraline would be different?

4

Thanks for sharing. I’ll look forward to results of your study.

Deb

5

I saw him as well and he diagnosed CSD and started me on Celexa, which has eliminated about 90% of my dizziness. So that bodes well if in fact that is what you have. The fact that you have actual room-spinning dizziness suggests perhaps something deeper that is covered over wtih CSD. Glad you had a good experience up there.

6

how is CSD normally treated, what medications are prescribed?

7

I think mainly SSRIs Rich I looked into this but I get vertigo also

8

Thanks for the information and update:)! It’s encouraging that there’s growing agreement on diagnosis and treatment. I just googled and read another study from 2009 (Digital Commons Chronic Subjective Dizziness (CSD) vs. Conversion Disorder: Discussion of clinical findings and rehabilitation). And I’m confused between MAV, VD, CSD, CD, Menniere’s, etc. I’m thinking I fit the MAV category, but is it the same as VD or CSD? What are the slight differences between these?

With my MAV (pending appointment with second neurologist this month after first one failed), I’ve also developed tinnitus and some hearing loss. I have no family history of migraines, though my father and were always prone to motion sickness. I’ve also had three episodes of spinning vertigo, but that’s quite different from the daily dizziness, motion intolerance, and persistent neck pain (what’s that all about???). Dieting and meds have helped diminish dizziness by about 70%, but it seems to be in the background just waiting for the slightest provocation or motion to come to the foreground.

Can anyone help me understand, in layman’s terms? Thanks in advance; I <3 this forum!

9

Guys, I have to tell you all that I am hugely skeptical about this CSD diagnosis. While I’m sure Staab is a great guy, his background is all psychology and therefore his interest centers around this idea that the chronic dizziness we MAVers deal with is rooted in some sort of psychological or even psychosomatic origin. There is a specialist in Sydney who does a similar thing and hands over a diagnosis of psychogenic dizziness. I think he uses a different term but it’s along those lines. And those people who then went on to to treat it as migraine (with Topamax for example) suddenly saw the end to their supposed psychogenic disorder.

Perhaps this may be true in some individuals, but if it is, I think it is extremely rare to the point of not being something that should be on our radar unless every other stone has been turned and every drug trial exhausted. It makes far more sense that the problem is rooted in migraine given the statistics. The facts don’t lie. Migraine impacts tens of millions of people and we know that dizziness is the second most common manifestation of migraine after headache. To me it’s a no-brainer.

Staab prescribes SSRIs for what he terms CSD but we also know that SSRIs and SNRIs also are hugely effective for MAV. I would argue that the large proportion of people Staab effectively treats have a migraine based illness – i.e. MAV.

Scott