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This is my own FReeper version of Mystery Diagnosis!

One month ago my balance disorder and cognitive problems on top of my pre-existing ME/CFS had become so bad that when my neurologist wrote an Rx for a handicap placard and I took it to the Dept. of Motor Vehicles I didn't get any dirty looks as I took it to the express window because I was moving with such evident genuine impairment.

I had suffered several years of gradually worsening balance problems but suddenly in the past year the progressive worsening accelerated and the medical testing intensified...all of it negative:

MRI of the brain MRI of the inner ear EEG VNG study (only minor problem)

Then on my own I found a website on dizziness that mentioned something called "vestibular migraine".

I had never heard of that. The more I read about it, it sounded exactly like the periodic squeezing feelingly in my head and cognitive dysfunction that I would get along with my "motion intolerance" to any head movement at such times. I would freeze mid-sentence and mid-motion wherever my arms were positioned when I would get these attacks and be unable to talk.

I could recognize what was described as the "prodrome" or "aura" that would precede the migraine.

I was amazed to read that the association of this type of migraine with debilitating vestibular balance impairment was considered "common" because neither my PCP nor my neurologist nor my ENT had suggested this diagnosis to me as an explanation for my symptoms.

As it happens there is an off-patent drug, topiramate (Topamax) that has been shown in "evidence-based" peer-reviewed trials to be effective for migraine and so I was able to rush to down to my neurologist and persuade her to prescribe topiramate for me instead of her choice. I happened to have a copy of a Journal of Neurology article that supported my selection and to her credit she deferred to the recommendation in that article for the topiramate.

The effect of the drug on my condition of amazing!!!

I went from holding onto walls and railings while walking to walking normally unassisted with excellent posture. I had been in danger of losing my driver license due to being unable to tolerate going around turns, and now driving around curves is no problem at all. I still have my ME/CFS problems and I still have migraines but they are mitigated by the topiramate, but my balance vestibular problems are 100% cured!

You really need a new neurologist, if yours truly did not recognize migraine as a possibility.

There’s a calcium channel blocker called verapamil that, taken once a day, is a splendid preventive for basilar or vestibular migraine. Generic, no side effects, $6 a month.

After months of CAT scans, MRIs, visits to the ENT and cardiologist, I finally was referred to a good neurologist who diagnosed the condition in 5 minutes.

“Shoot-me-and-get-it-over-with” attacks had consistenty been a week or two apart, seriously affecting quality of life. Now there are one or two episodes a year, and generic Antivert (meclizine, over the counter, 90 for $6) at onset reduces their severity so I feel fine the next day.

“I was amazed to read that the association of this type of migraine with debilitating vestibular balance impairment was considered “common” because neither my PCP nor my neurologist nor my ENT had suggested this diagnosis to me as an explanation for my symptoms.”

P.S.:

As I am reading more about this topic and looking back I can see that my neurologist suspected that I might have had migraine as months back she began to try me out on a series of anti-depressants in very low doses that are either off-label used for migraine or were formerly thought to work before the 2012 evidence-based American Academy of Neurology article that I posted came out. She just didn’t mention that she suspected migraine.

My reaction was to be mostly offended that she was insinuating that I was “depressed” rather than having a “real’ symptom.

She also needed to hold back on going conclusively with a migraine diagnosis until the results of the EEG and inner ear MRI that had been ordered by the ENT MD came back to in insure that I wasn’t having seizures and didn’t have a tumor on my inner ear nerve respectively.

So only having completed the differential diagnosis of exclusion and then seeing the very positive response to the initial dosing of the Topamax was it good for her to be confident to titrate me up more as she is doing now.

“As it happens there is an off-patent drug, topiramate (Topamax) that has been shown in “evidence-based” peer-reviewed trials to be effective for migraine and so I was able to rush to down to my neurologist and persuade her to prescribe topiramate for me instead of her choice. I happened to have a copy of a Journal of Neurology article that supported my selection and to her credit she deferred to the recommendation in that article for the topiramate.”

P.S. I want to add this comment to expand on why my neurologist so readily deferred to an “evidence-based” peer-reviewed drug selection. Some FReepers might not be as familiar with this professional lingo as medical and other scientists are.

Here is a Wiki link which explains that “Evidence-based practice” is a well-established movement across many fields of medicine meant to correct sloppy former practice of medicine by habit under pressure from big pharma reps in short skirts or kickbacks or the placebo effect or “we always prescribes this pill for that”

When I showed up in my neurologists office with a recent 2012 survey from the American Academy of Neurology detailing their strict evidence-based criteria as applied to magraine medication, she deferred to the best judgment of her profession and of this well-established quality control methodology...which I just happened to bring through the door to her on that day through dumb luck between debilitating migraines.

http://en.wikipedia.org/wiki/Evidence-based_practice

“Evidence-based practice (EBP) is an interdisciplinary approach to clinical practice that has been gaining ground following its formal introduction in 1992. It started in medicine as evidence-based medicine (EBM) and spread to other fields such as dentistry, nursing, psychology, education, library and information science and other fields. Its basic principles are that all practical decisions made should 1) be based on research studies and 2) that these research studies are selected and interpreted according to some specific norms characteristic for EBP. Typically such norms disregard theoretical and qualitative studies and consider quantitative studies according to a narrow set of criteria of what counts as evidence. If such a narrow set of methodological criteria are not applied, it is better instead just to speak of research based practice.[1]

“Evidence-based behavioral practice (EBBP) “entails making decisions about how to promote health or provide care by integrating the best available evidence with practitioner expertise and other resources, and with the characteristics, state, needs, values and preferences of those who will be affected. This is done in a manner that is compatible with the environmental and organizational context. Evidence is comprised of research findings derived from the systematic collection of data through observation and experiment and the formulation of questions and testing of hypotheses”.[2]

“Empirically supported treatments (ESTs) are defined as “clearly specified psychological treatments shown to be efficacious in controlled research with a delineated population” [3]”