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Suspect Sleep Study Misdiagnosis

Hi! I’m 60-years-old and was diagnosed with migraines at age four (after my father’s death). Migraines became debilitating at age 34 and I finally sought help from a neurologist. There was a lot of drug trial and error, but we finally hit a winning combination in 1993 of 10mg amitriptyline and Midrin as a migraine abortive.

Most people didn’t even realize I have migraines until recently. The FDA pulled Midrin off the market along the way. Isometheptene-Dichloral-APAP replaced it, then the FDA pulled Isometheptene-Dichloral-APAP last year. My previous neurologist passed away, my primary had taken over prescribing, and has recently sent me to a neurologist because I need a vasoconstrictor and he thought it was time I was reevaluated. My first appointment with the neurologist was February 2019. The triptan drugs have been a disaster, so far. The Trokindi has been good. The disturbing thing is that I have developed stabbing pains that started in October 2017, which are getting progressively worse. These have been ignored.

My last brain imaging was 1993. The neurologist hasn’t ordered any imaging. Instead, I find myself in what turns out to be a sleep clinic that really has a neurology speciality on the side. I’m barely over the mark on apnea (9.😎, I doubt the diagnosis because I have a spinal injury that slightly effects my breathing, and it’s pretty clear to me that no one leaves this sleep clinic without an apnea diagnosis. The techs are hardwired for sales. It was like “timeshare” level tactics. It really sounded like I was near death, until I outright demanded the tech explain exactly how severe my condition is. It’s mild. Then he told me I really should take the CPAP because my insurance would cover it, even though it won’t cover tritiation to determine how to make the adjustments to make the CPAP work, which they seemed to think was important enough to the process to submit to my insurance. Instead, they’ll just go about tweaking the CPAP until they get it right — at my expense — after putting me through a lot of trial and error and a lot of 60-mile round trips while they screw with it. I refused, demanded a copy of the sleep study report, which he clearly didn’t want me to have. He made me drive 30-miles one-way to pick it up in person, rather than mailing it to me. I had my four month checkup w/ my neurologist’s nurse practioner. I asked for the data off the recorder for a second opinion multiple times and have been denied the second opinion. The NP acted like I hadn’t even spoken. Additionally, her summary contained incorrect info respective to our appointment.

I’m going to ask my primary to refer me to a different neurology clinic, one where I can get someone to work outside the parameters of a sleep study. I realize some people are helped by sleep studies and CPAPs, but this one wreaked of scam. It appears to be the cash cow running that clinic’s finances. I’m just curious if anyone else has run into this problem?

  1. Hi LisaO,

    I'm so sorry you are going through this. It's awful to feel unheard by the doctor (s).

    The one thing I can say about a sleep study is any sleep issue can trigger a migraine attack for some people. This includes apnea, restless leg, and periodic limb movement disorder. I have the latter two and getting my sleep under control has helped.

    I would encourage you to seek out the expertise of a doctor who is board certified in headache medicine, which may be different from a neurologist. Let me share a few links with information on how to find one; and

    Wishing you a low pain day,

    1. Nancy,

      Thanks for your response, and especially for the links! My annual well woman checkup w/ my primary was yesterday. He actually spent 1.5 hours w/ me, listening to me vent frustrations over dealings w/ the neurology and sleep clinic. He did identify a heart rate concern on the sleep report and is sending me for a second opinion w/ a sleep specialist. After researching neurologists at University Hospital in MO (30 miles away), I came up w/ a list of 3 that my insurance should cover. The only migraine specialist in my area from the list you provided is also at University Hospital, but doesn’t identify w/ a migraine specialty on the business website. His office domicile is in a sleep clinic, as opposed to the hospital. I’m only finding sketchy stuff connecting him to migraines, so I guess we’ll stick w/ our original referrals. I was just really wondering whether anyone had been misdiagnosed in a sleep study? Thanks for your response! LisaO

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