Establishing a baseline: Why you should visit your doctor when you don’t feel sick

In an earlier post I raved about Susannah Cahalan’s memoir, Brain on Fire, which I read for one of my bookshop’s book clubs. What I didn’t say in that post was that Susannah, a New York Times bestselling author, graciously offered to call into our book club in January to talk a little about her experience and field some questions. (Spoiler: it. was. so. cool.)

She said a lot over the phone that really resonated with me, but what seemed most relevant to share were the words of wisdom she gave to one of our attendees, who’d had a strange ailment in her 20s that mimicked some of what Susannah documents in her memoir. I can’t recall Susannah’s exact words, but her point was driven home to everyone gathered around that little phone speaker: establish a baseline.

I’d never quite thought of it this way before, but now it makes so much sense to me. It’s of the utmost importance to set up relationships with caregivers and doctors even when you’re fairly healthy, not to wait until a crisis occurs to schedule a visit. If doctors get a chance to know the “real” you, they will be better able to tell when something’s off. Though it’s helpful to tell healthcare professionals when you don’t feel quite right, and even more helpful to have friends and family reinforce your statements by attesting that, in fact, your current state of health is not like your “regular” self, nothing can replace the doctor-patient relationship. The better a doctor knows you, the faster he/she will be able to tell when you truly are not quite right.

I remember years ago telling my then-neurologist that Zonegran made me feel stupid and that I couldn’t spell well. No matter how much I emphasized the fact that, for my entire life up until taking Zonegran, I was very proud of my smarts, my good memory, and my stellar spelling, he only had my word to go on and didn’t know me well enough to be able to tell what was real and what was my imagination. Of course we’d like to think that doctors would just trust our judgment, but sometimes when we’re under the weather we are in no position to accurately describe how we aren’t feeling like ourselves.

How many of you have established a baseline with a healthcare provider? Do you have any doctors or nurses who can tell right away when something’s off with you? How does that impact the care you receive?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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  • Mary Targee
    6 years ago

    Your blog comments expand my knowledge of successful/unsuccessful migraine treatments.Some of the symptoms you describe are all too familiar to me. I began experiencing severe headache symptoms when I was about 14 years old. The first one I can recall happened in my sophomore year in high school. Subsequent headaches lasted 3/4 hours to three days. Some of the symptoms I experienced were a general malaise, nausea, cold sensation up my nostrils, severe throbbing at one temple which eventualy travel across my forehead brushing my eyebrows, a descending darkness across my eyes, leopard spots, circles, wavy lines, jagged line, impaired visual acuity and peripheral vision, letters and numbers developed shadows. In addition, my color vision disappeared and I could only see in black and white.

    My depth perception, balance, hearing, smell, feeling and taste were affected by the migraine. I struggled through my school days and went to the school nurse. I was excused from school and walked home so I could go home and lie down in a dark room. My migraine headaches progressed. They became more intense and affected my activities of living. I coped with migraine for years and never made a big deal of it. My primary care physicians were not much help back then during the 50’s, 60’s, 70’s, 80’s, 90’s. I just accepted my lot in life. It wasn’t until late 1990 that I complained about the pain more seriously to my primary care doctor. Because of my increasing age, I was getting worried that I might have something more serious than a headache because of its pain and frequency. He did both a CAT Scan which revealed a white blank spot in my brain. I was concerned because my mother had been diagnosed with MS back in 1954 and Lahey clinic stated she had MS white plaques in her brain. My doctor ordered an MRI also because the radiologist could not differentiate whether the white spots in my brain were a small ischemic stroke, tumor, MS Plaque or it was a congenital or birth injury affecting my legs, feet, etc. The MRI said the white spot was most likely a small stroke or a birth injury. At least these test eliminated the possibility of an aneurysm.

    Last year after complaints about my migraines and vision problems to my current primary car physician, she recommended me to the New England Regional Headache Center.
    Examination by a member of their staff resulted in a diagnosis of “Migraine”. Because of other heath problems, I was prescribed vitamin B2 which I could increase if necessary. It seems to be helping.

    The staff at New England Regional Headache also suggested getting bloodwork to determine if I had Arteritis (small artery inflammatory disease) which can cause
    Migraine like symptoms.

    Many years after experiencing my first Migraine, I was diagnosed with Autoimmune diseases such as: Sjogren’s, Scleroderma, Primary Biliary Cirrohsis. Looking back, I am wondering if there is some connection in all of these health issues.

    Other members of my family have been diagnosed with Migraines. My niece, my son and my granddaughter. Maybe Migraines can be diagnosed as a disease, disorder, syndrome, or condition and could exist by themselves or in connection with other diseases.

    Hope this information helps. Muniabunny

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Muniabunny,

    Thanks for sharing your story with us. It’s true, migraine can be comorbid with many other conditions. This means that migraine and these conditions can occur together, but are not caused by one another. Ellen wrote a nice article about migraine and comorbidity you may want to take a look at here; http://migraine.com/blog/what-is-a-comorbid-condition-a-bulleted-list-for-patients/.

    Nancy

  • taralane
    6 years ago

    I have had so many doctors over the years, that “baseline” is almost impossible. Also, if I am not feeling well, I usually cancel the doctor’s app’t, and reschedule. I also, when meeting with the doc. for the first time, always tell the scheduler that they may have a 24 hour cancellation policy, but from time to time I will get a migraine in the middle of the night before the next day’s app’t, and will cancel first thing in the morning – that is if I am clear enough to cancel. Sometimes I won’t show up, so a morning phone call from them would be a good idea.

    I have had a lot of doctor’s offices get testy about this, but I always hold my ground and will not pay a cancellation fee if I am ill. After all, I am usually coming to them for something concerning migraine disease, and they of all people should understand. It may put holes in their schedule, but I am sure they can find something to do with their time for the 15-30 min. I have be scheduled.

    I am convinced that doctors don’t really care about whether I am feeling well or not on a medication they have prescribed. They are primarily interested on whether, from their point of view, it is working. I have been on Depakote ER for about a year now for a co-morbid condition of bi-polar disease. My doctor likes it because he feels it has greatly improved my mood swings. My problems with the drug are the side effects. It makes me tired, I’ve gained weight, I don’t like the way it feels as it runs through my system – and believe me you can feel the drug coursing through your blood stream and it is not pleasant. I have lost half my hair which used to be thick, and is now dull and thin. The most important thing is that I have what I call a “flattened affect.” I don’t feel happy or sad. I don’t smile, talk to people (except the checkout person at the grocery store) and have little impetus to make any effort, because my energy is often so low – especially because I have a headache/migraine everyday of my life in one way or another, and this does not help. I don’t know whether he sees this or not. I talk about it, but he still wants me on the medication.

    I know my life is just not fun. I don’t look forward to too much, and that has changed from a year ago when I had more moments of wanting to do things.

    I’m sure I have taken Zonegram. but at the moment don’t remember what it is (memory loss from one of the many drugs I have taken over the years that effect memory – yes and spelling, which I, like you, always aced).

    It would be nice to think that a doctor could have a baseline for me, but in this day and age of medicine, insurance, and high costs, I think we have to rely on ourselves and our close friends to keep doctor’s informed, and pressure them when they don’t listen. They may not react well, but having yourself as the person you know or have known, is vital, especially when dealing with migraine disease.

  • alphabet
    6 years ago

    Zonegran is a dirty word!!!!

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