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Do you and your specialist disagree on the severity of your Migraine Disease?

A recent study was published that illustrated the discord between patients and physicians. The research was done in rheumatoid arthritis patients, but I post it to you here today because it brings to mind some of the problems I’ve seen voiced by Migraineurs.

In the study 36% of the cases observed had a “clinically meaningful difference” between patients and their physician’s assessments of their disease. That’s over 1/3rd of physicians that scored their patients disease lower than the patient scored it. The study suggested that the researchers felt that patient language or mood may be posing “barriers to communication” that may have caused the disparity. If you go and read the study, you’ll find some fairly fancy language that might be confusing — don’t let it. The researchers were not blaming doctors for how well they listened to their patients, but how well the patients communicated with them.

What are your appointments like? Are you able to tell your doctor everything you went there to say, or are you interrupted before you get the chance?

I have been to about every kind of doctor imaginable. I have been blessed by doctors who sit and listen and intently ask questions, then repeat back to you what they understand you said. One wrote his notes in front of me, read them to me and gave me the chance to make any corrections before he walked out of the room. I’ve also been plagued by some doctors who won’t let me finish my first sentence before interrupting me with a question or a statement that hijacks the visit.

I’ve written about my suggestions for a fruitful doctor’s office visit here (see 6 Tips for Optimal Results at Your Doctor’s Visit) and I do practice what I preach. That said, I am nearly giddy when I leave an office appointment feeling like I accomplished what I came there to do. When my doctor doesn’t understand the impact my Migraine Disease is having on my life, is the problem mine, or his?

Some tips for making sure you are being heard and understood by your doctor:

  • Follow this link and run your office visits like a timed business meeting. You only have a few moments, so make them count.
  • Be sure to use language that speaks of facts. Some examples: I used to go to work and never take a sick day, and now I am unable to work. I no longer can do normal day-to-day chores. I spend 20 hours of each day in bed.
  • Rate your pain on a scale of 1-10. 1 is no pain, 10 is the worst pain you can imagine. Do not ever overrate your pain above the 10 scale. Your doctor will not take you seriously because they have seen things so terrible we can only imagine. Overrating your pain also hurts your doctor’s other patients because he becomes de-sensitized to patients who truthfully use the scale. If the pain is beyond anything you could have imagined before, then rate it 10 and tell him that.
  • Rate your disability on a scale of 1-10. If 1 is no disability, and 10 is living in a full care nursing facility, where are you? Speak facts.
  • Rate your family life on a scale. If 1 is bliss, and 10 is you living alone because everyone has left you, where do you fall now? Speak facts.
  • If all else fails, ask your doctor to rate your disability, then use that rating to generate a conversation in which you are able to set the record straight.

It is our responsibility as patients to be sure that our doctors understand the impact our disease has on our lives. If they don’t understand, how can they help us? If yours won’t understand you, it might be time for a new doctor.

The good news about the study was that doctors and patients were in agreement that something needs to be done about the disconnect in assessing RA.

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.

Comments

  • Lynne Lee Bennett-Cassaro
    7 years ago

    I have had more trouble being positive and under-rating my pain. MD must hear “you are God,I am healed…hallelujah” when I say I am a little better. Just because I only think about jumping off a bridge 5×/day instead of 10 doesn’t mean kick me out of your office and neglect my treatment. Then,when I am honest they think I am crying “wolf!”. Aargh…if I am not crazy these darn MDs are going to drive me there…at least it’ll be a short trip,on a short bus. Someone get me a helmet!!

  • John Char
    8 years ago

    Thank you so much for connecting on Twitter…

  • Kaitlin Vickers Edwards
    8 years ago

    I have had chronic migraines for years since I was at least 10 years old at least 2-3 per week. I have learned to live with some of the pain therefore I can have a smile on my face when my migraine pain is a 5-7 if it’s worse than that I don’t and people around me know something is wrong. I was a nursing student and when we talked about pain scales there was a big conversation about how people can not look like they are in pain and still be in pain. Healthcare professionals are suppose to take your word for it on pain however some still have not grasped this concept.

  • Dianna Sandora
    8 years ago

    The doctors I have gone to can’t seem to figure out why I get them, I have had just about every scan I can have done and those really stupid tests where the doctor has you stand and touch your nose and follow your finger. What a joke! The only medication that really gets rid of my migraine fast is one that my insurance company does not cover and to get 7 pills is over $400! It is really crazy.

  • Dianna Sandora
    8 years ago

    Thank you for the suggestion, I usually try not to take anything I will use an icepack on my neck and shoulders and go to bed

  • Elena Barbera
    8 years ago

    I hated all those pills. During the time when I used to get migraines regularly, I went for acupuncture for other health reasons. As a side effect, I ended up having way fewer migraines. I’d recommend giving acupuncture a shot. Now, if I have a migraine (which is rare), I take two Excedrin and a cup of coffee and it’s gone.

  • Dianna Sandora
    8 years ago

    It’s called Treximet, I have Imitrex, but it doesn’t knock out the migraine like the treximet does

  • Dina Cox
    8 years ago

    Which pill is it that costs that much? that is insanely outrageous! I get Relpax and Immetrex. They used to be $25 a pill which is bad, but not as bad as what you have to pay. To charge that much is an absoulte crime;. Health insurance should cover all meds without question. 🙁

  • Carla Fernandes Ceurvels
    8 years ago

    Sometime I am frustrated. I have a medicine that works, within two hours I can be pain and nausea free. But getting it when I am out can be a chore at times. One time I called and the receptionist held on to my message till 5 when regular hours were over. I was in so much pain it was numbing, almost like a stroke. I then got the call and they would not fill it, it was a friday and she wanted a follow up appointment on Monday, they told me to come into their walk in clinic which is a 45 minute drive, I through the phone against my wall. DRIVING was the last thing I was able to do. So yes, I explain very well how much pain I am in, do they get it? NO! THE kicker is when they finally filled it, she filled the amount wrong, I get 12 a month, they filled it for 4 which was one time the dr on call gave me 4, so it was the last one filled on the computer. All my dr. did was hit print and dint look at the amount. Now I cant seem to get it fixed back to the 12 pills I SHOULD. Ughhhhh.

  • Clare Perpetua Morris
    8 years ago

    Sounds like you need a new doctor or at least need to let him know how unresponsive his office is. Hope you’re feeling better.

  • Tonilynne Le Mairee
    8 years ago

    Where would a person find a Migraine Specialist? I was told a neurologist was an expert in that field!

  • Migraine.com
    8 years ago

    Hi Toni – Not all neurologists are migraine specialists (and not all migraine specialists are neurologists!). Migraine/Headache specialists have completed additional training specific to this field. The Migraine Research Foundation provides a list of physicians who have completed certification here: http://www.migraineresearchfoundation.org/pdf/Diplomates-Aug2010.pdf You may find other headache/migraine specialists in your area as well

  • Dawn M Hadland
    8 years ago

    There aren’t many of them, but if you go to http://www.AHS.org or google American Headache Society, there will be a listing there I believe. Or you can try the American Council for Headache Education (ACHE). There will definitely be a list there…it is run by AHS. I think their website is http://www.achenet.org.

  • Sandy Huff Poffenberger
    8 years ago

    This might sound off track, but it isn’t really: why is it that almost every neurologist (and neurologist headache specialist) that I have been to asks for copies of my MRI films, but then doesn’t look at them; only looks at the report. On the other hand, when I have been to my orthopedic doctor about knee and shoulder problems and my ENT doctor with CT scans – they always look at the films first. My ENT doctor told me he goes by the films, not by what the radiologists write. Does something seem wrong with this picture? Oh, and the Pain Mgmt doctors I have been to don’t look at the films.

  • Marisol Carter
    8 years ago

    How timely! I have the distinct feeling my Doctor does not realize the impact these migraines are having on the quality of my life…taking responsibility is what I will do..many times I’ve walked into the office in a fog..hoping the doctor would just understand! So this article and the examples are priceless because they concisely convey what is going on with you so the doctor understands better how you are feeling..as opposed to walking in and saying. “My head feels like its going to explode everyday!” like I have done many times..Thanks for the tips =).

  • Tracy Brooks
    8 years ago

    I swear Marisol you could go in with a bomb strapped to your back and in my experience they have not listened or cared anymore

  • Diana Lee
    8 years ago

    Having seen doctors who weren’t good at their jobs makes me so thankful for the wonderful team I have now. Despite still being quite debilitated, I feel like I’m in good hands, which helps keep my spirits up.

  • Michelle 'Ldydrgn' Smith
    8 years ago

    Several years ago my migraines went chronic and I was absolutely miserable. I was forced onto short-term disability for a few months. When the problem didn’t let up and needed to apply for SSI, the neurologist wrote to them that he would have me “cured” within the year.

    Wow… there was a cure? *rolls eyes*

    Needless to say, I never went back to him and have had to just make my way the best I can since then.

  • Debra Nemeth
    8 years ago

    Agree. IF I WANTED TO GET HIGH…OR WHATEVER…IT WOULD BE EASIER TO OBTAIN DRUGS OFF THE STREET! It’s bad enough to feel so miserable and then top it off with the (unspoken) accusation of being a drug seeker.

  • Debra Nemeth
    8 years ago

    Well … my last visit to my neurologist, I was very, very dizzy pain..all that crap that keeps us in bed. I never would have gone that day, except it was a scheduled appointment and “if only she could see for herself, maybe she wold understand”. In gathering medical stuff for social security, I asked for a copy of the note from my last visit (this was later..not that appointment day). She wrote, patient slightly uncomfortable. OMG! Slightly uncomfortable to ME..means, yeah I can still go about daily life, work…whatever…drive….it brings me to tears whenever I think about this. How can anyone ever know…unless they themselves have experienced these mf’s?

  • Carla Fernandes Ceurvels
    8 years ago

    Forget trying to find a cure, I just want 5h3 Damn medicine without having to struggle to get it. They just dont understand, then to have the receptionist call me back makes me feel like a druggie. Its a 5 mil. tab for Chripe sake that does nothing other than help to ease my misery. When your in that much pain, I am not looking for a freaking High. That’s the last thing on my mind.

  • Dawn M Hadland
    8 years ago

    I hate to say this, but it took 14 years of daily Migraines and we did it! Since March, 2007 I have had 8 significant headaches. And only two of them were Migraines and one of those was associated with a brain abscess.

  • Diana Lee
    8 years ago

    I want to punch doctors who suggest there is a cure. There isn’t! And the arrogance of that statement. Sheesh.

  • Selimah MysticHips Bellydance
    8 years ago

    I understand, back whenI had migraines they thought I was crazy!! I guess I am a little .LOL

  • Fredrick N. Albury
    8 years ago

    Im thinking that hemeant youd be “CURED” as in a fan member of the group “THE CURE” (Corney I know but thats the mood Im in)

  • Misty Levenick
    8 years ago

    My current doctor has reccomended I see an endocrinologist (sorry if spelling is incorrect) because I have had a headache on and off since Christmas. It escalates into a migrane about 2x a month. I have a miriad of other physical ailments that have prompted his decision, but I have had migranes since I was 5 years old.

  • Dawn M Hadland
    8 years ago

    Have you ever had a spinal tap and had the pressure measured? There is a rare disease called Intracranial Hypertension that causes all kinds of strange symptoms, and not the same in all patients.

  • Roger Gray
    8 years ago

    An endocrinologist MIGHT give new insights to a lifelong problem.There can be a hormonal aspect for many people.Karen’s doctor sent her to a neurologist.But new eyes looking at an old problem sometimes (but not always) helps.

  • Sally Colby Scholle
    8 years ago

    I got a lot more empathy and action (in the form of drugs that actually work) from my internist than from the neurologist, which is a good thing because I see the internist regularly for other issues.

  • Jamie Sohn
    8 years ago

    Is there another reason you’re seeing that neurologist? “Drugs that actually work?” is that in the form of pain relief, or preventives? Just curious… Perhaps it’s time to see an actual Migraine Specialist and ditch the Neuro?

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