What did my doctor just say?!

As you know, I write books about migraine and chronic pain and will be starting a new book in January that will be designed to help doctors communicate more effectively with their patients when talking about headaches and migraine. My co-author and I have put together a number of chapter ideas to hit key messages doctors need to tell patients and strategies for delivering this information effectively.

As someone with migraine who has probably talked to many doctors about your symptoms and treatment, you know better than anyone about what we doctors typically say — the good, the bad, and the ugly. I’d like to hear from you to help focus our book on messages that are most important to those people with migraines. So here are some questions to get you started:

  • Are there things your doctor never asks about that you think he should?
  • Are there questions your doctor asks that you never quite know how to answer or questions that don’t really seem to make sense?
  • When your doctor talks to you about your migraines or migraine treatment, are there some things that just never make sense?
  • Have you had some doctors explain things in such a way that you say, “So THAT’S what those other doctors were trying to tell me!” I’d love to hear about them.
  • What are the questions that never seem to get answered at your appointments?

I’d love to hear your comments here or you can contact me through my website www.DawnMarcusMD.com if you prefer. I have always found patients have been my best teachers and have had a number call me on things I would routinely say that could be easily misinterpreted. Thanks in advance for helping to further my education and the education of other doctors, too.

 

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

View Comments (22)
  • DebbyJ56
    6 years ago

    For years I had been telling my GP and a couple of different neurologists that there were times when I felt that all of my nerve endings were on the outside of my body. My face was very sensitive for anyone to touch. I couldn’t stand clothes sometimes. Had to be very picky about my sheets. Couldn’t wear pjs. And had gotten to thd point that I couldn’t wear underwear.
    I started to go to Thomas Jefferson Headache Center in Phila, PA, and the second visit with Dr. Michael Marmura, he lightly touched my face with the back of his hand and I flinched. I explained to him what I’d been telling everyone all through the years. He said, well yes, there is a name for that. It’s ALLODYNIA! I was amazed to say the least. Someone finally HEARD me. I was not crazy. I went home and research of course, and realized zi had almost every symptom. But now I know what is wrong with me. I have fibromyalgia as well so my chances of having this were high.

  • DebbyJ56
    6 years ago

    I also always take my husband to every appontment because I have had chronic daily migraines for seven years. Conversations can become very cnfusing for me. My doc prints my protocol every visit and my husband knows all of my meds and when and what to take. I get pretty helpless during a bed migraine attack.

  • Dr Marcus author
    6 years ago

    Cindi — hope your new doctor is turning out to be a good match for you. Thank you so much for sharing. We doctors need to hear these kind of comments as we sometimes forget how our patients can be affected when we’re acting too rush, distracted, or worried about other things. We doctors should truly feel honored that our patients trust us enough to open their lives to us and your comment is a wonderful reminder that our behavior can have an important impact. Thanks and hope things are going well for you.

  • Cindi
    6 years ago

    I just started with a new neuro, and she seemed (by her sighs and body language) very impatient as I told her my 52 yr life story. That bothered me. It was as if she didn’t want me to play any role other than answering questions in my own health plan. She never smiled during the entire visit. I changed neuros BECAUSE the last one never seemed to do anything at all – it was always me doing the research and comming up with ideas. This one seems as if she will be the TOTAL opposite. I’m going to ride with it for a while because she comes highly recommended, but her bedside manner could use some softening. However, if she turns out to be the best thing since sliced bread, I will be very happy and learn to deal with her curtness. I don’t need my hand held, but would a smile and some empathy be too much to ask?

  • Dr Marcus author
    6 years ago

    Nancy’s right on about appointments somethings getting overwhelming for both patient and doctor, but also needing to get important questions answered. I usually encourage people to remember you don’t have to get every question answered at your first visit. Pick the top 3 questions that you need to have answered right away and start your questions to your doctor by saying, “I have three questions I’d like to have answered today.” The doc won’t rush through answers thinking you have dozens of questions, so you’ll like get better information.

  • Nancy Harris Bonk moderator
    6 years ago

    🙂

  • Dr Marcus author
    6 years ago

    Thanks so much for all the comments. It’s truly amazing how we docs can often miss the boat — and oftentimes have no idea how we’re failing to meet our patients needs. Your stories are extremely helpful and thanks so much for sharing them. Keeping track in a notebook. Keep the comments coming!

  • caradrouin
    6 years ago

    My biggest Dr. complaint is in diagnosing and treating other problems. Because I get migraines, other doctors see me as a hypochondriac and symptoms of other non-headache problems are dismissed until they are very serious. I have been hospitalized and had a few surgeries due to this. This is particularly bad if they want me to take a medication that causes migraines. Then I am simply non-compliant.

  • Nancy Harris Bonk moderator
    6 years ago

    Sadly, this is all too true. I have a dear friend who has a son who is very ill. Docs can’t figure out what’s up so they attribute his pain, which is intense, to drug seeking. But when he has a real condition, like pancreatitis, then he is a “real” patient and must be sick. You can “see” pancreatitis, you cannot see migraine and headache.

  • taralane
    6 years ago

    My biggest complaint is whether my doc is going to hear what I am telling him/her. I often come away, even with a list in hand, that although I asked my questions, and brought up concerns, they were not addressed. I feel like I am in the middle of my own research and the Dr and I don’t know what they have heard from me, whether they know of what I am asking and just ignoring it, or have some other idea they are not telling me about at the moment. I try to get everything answered, but often come out feeling very confused, and also without a clear tx plan I understand.

    I too get so exhausted from dealing with the daily pain, the side effects of the meds, the depression that comes and goes and all the other myriad symptoms – aura, nausea, sore scalp & temples, that I can barely get out of bed, let alone exercise. I would love to be exercising on a regular basis, but my energy level is very low most days, or I may be nauseous, or having irritable bowel or something else. Lack of balance has become a problem, short term memory loss (side effect of Topomax), and on and on.

    I am trying to change docs right now and so updated my migraine history from 1969 when they started until today. I counted 72 different medications I have been on, and my system is so sensitive that one little thing can throw it off. These are the things that make me more debilitated, and make my life more difficult. I sometimes would like my docs to take all the meds they put me on, experience the side effects before they write me a rx. Same for having a migraine & all other things that go with it. It would make it easier for them to understand how I am expressing how things feel to me so I don’t get blown off as making a big deal about something which they think is nothing.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi hanging,

    Sometimes I think we may have so many questions for our doctors they may be overwhelmed. In theory all our questions and concerns should be answered when we see our doctor. But the reality is they just don’t have the time, or maybe education to handle more complicated cases like ours. I try to ask questions that are of the greatest concern to me first, and then review his answers with him to make sure I understand everything. If it is bothering us, it is a big deal, and as health care providers they should understand that.

  • Julie
    6 years ago

    Same here MJ. Not only the level of head pain. Seems like the naseau, motion sickness-MAJOR neck/shoulder and upper back pain-I have very sore and tender scalp, dizziness, I have poor balance at times too. There are frequent times I’m more forgetful and cannot form a coherent sentence and my husband has to interpret it for me or finish it or if he can try to figure it out-it doesn’t happen all the time. I have also trouble concentrating, my vision is always changing-fuzzy blurry, can’t stand light too bright or sometimes not at all. Forget it about smells or med to loud noises-I can’t tolerate them. Zilch on energy, if I can even manage 1 pain free day I’m so exhausted from fighting pain I can’t work up energy to exercise let alone try to clean house or do laundry and cook meals. I can tell when the Barometric pressure changes because that is a migraine trigger-my ear will pop usually at that time and then I’ll get the aura’s usually and head pain. My ear will not pop any other time. I’ve had my dentist check me earlier this year form TMJ and I was in the clear. I often have at weird times ringing or will lose hearing for a short time. It all happens in the RH ear. But the majority of my migraines attact the LH side of my head right behind the LH eye-that ice pick boring, searing, stabbing intense pain. Once in a rare while it will move and pick on the RH eye which will throw me off kilter because I’m so use to it attacking the LH eye. But the past 2 months I’ve been put on oxygen therapy along w/Sprix or Migranal as abortive.

  • Nancy Harris Bonk moderator
    6 years ago

    Good, Julie. Well, not good, but good that you have a plan of action. I’ll be anxious to hear what your doctor has to say. Feel free to print out information and take it along with you.

    You may want to check your profile and see if that has anything to do with you not getting replies – let me know about that too.

  • Julie
    6 years ago

    Nancy. I just happened to see this last reply. I don’t get notifications for some reason. I see my headache DR in 2 days and will bring up the IHH. I do hear sometimes the whooshing like I can hear my heartbeat when I lie down at night. That is really worth checking into. I was updating my “symptoms” and “concerns” sheet to take with me on my follow up appointment and will definately highlight that as a concern. Thank you Nancy.

  • Nancy Harris Bonk moderator
    6 years ago

    Julie, tell me more about the “whooshing” in your ears? And ringing in your ears too? Have you ever discussed idiopathic intracranial hypertension (IHH, formerly known as pseudotumor cerebri) with your doctor? Your mention of vision issues, ringing in your ears and “whooshing” can be symptoms of this condition, which I think is overlooked. When you lay down at night, can you hear your heartbeat by any chance, or that “whooshing” sound again? here is some information about it; http://migraine.com/blog/migraine-comorbidities-idiopathic-intracranial-hypertension/

  • Julie
    6 years ago

    I ramble too much. Sorry. I told him when the barometer changes i get the ringing in the ear, aura, dizziness and the ear pops. He told me to go to the dentist to see if I had TMJ. So when I had a dental chealing I asked if I had TMJ and the dentist said no signs of it. So when I saw my neuro next I said the dentist said I had no TMJ and I stated again my ear will pop with the ringing and whooshing swishing noise when the baramoter changes and he didn’t seem too concerned. Should I worry about it?

  • Nancy Harris Bonk moderator
    6 years ago

    Ok, so you had the popping checked out and he had the results? I’m confused, then what?

  • Julie
    6 years ago

    But this doesn’t seem to be a major concern to my neurologist. Maybe i need to write it down or print it out and have him read it. I told him about the ear popping and he said to get checked from TMJ and I did and told him so.

  • 6 years ago

    Asking questions simply about my level of head pain does not really reflect the true nature of the disability I am experiencing, because often what is most debilitating for me during a migraine is not so much the head pain. It can be any combination of the following: nausea, motion sickness, sinus and ear congestion, neck/shoulder/back pain, dizziness, poor balance, dropping things, can’t find words, slurred speech, impaired hearing, can’t concentrate or focus, light/sound/odor sensitivity, low energy, low mood, digestive issues and probably a few other things I am forgetting right now.

  • Nancy Harris Bonk moderator
    6 years ago

    Excellent, MJ. It truly is amazing to realize some doctors still focus on head pain alone, when migraine is so much more!

  • 6 years ago

    Hi Nancy,
    Your suggestion to bring a written list of concerns is always a good one, and one I follow religiously now (along with taking notes on what the doctor has said so I won’t forget!) My comment is really based on past complaints I’ve had with doctors who seemed primarily focused on level of head pain to the exclusion of anything else. Fortunately, the migraine specialists I’ve seen more recently have not been like this.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi MJ,
    For your next appointment, try writing down everything that is problematic for you and bring it with you. When you have questions/list in hand at the doctors, your less likely to forget. I always make a list and bring it to the doctors I see.

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