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Living with Migraine

Would you take your dr saying you looked strung out personally?

  • By Autumn Sparrow

    Yesterday I saw my neurologist as my attacks have been getting worse the last few weeks. At the end of our appointment he commented that the last few times I saw him I looked strung out. I was a bit taken back by his comment as I don’t use drugs, I was in the midst of an attack so I bit my tongue. Later I realized that the last 4 times he saw me my depakote levels had gotten way to high and I’d been very ill and that must have been it (6visits to him and urgent care in 3 weeks). Could barely get out of bed, dizzy, dropped 13 pounds in 8 days etc… at the time he played it down (my health insurance & urgent care drs took it more seriously)… At the time he wanted to know what I was doing to lose the weight, more than anything (still happening but he didn’t mention it this time and honestly I wouldn’t mind losing another 30 pounds.

    Today I’m still having trouble not being offended by his remark, and wonder if it’s affecting my care. He’s been my Neuro for 6+years the last 6 months he’s made other comments that make me wonder but I usually have migraines so I try not to react.

    Anyone have any thoughts?

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  • By Nancy Harris Bonk Moderator

    Hi Autumn Sparrow,

    I’m sorry to hear you had an unpleasant visit with your doctor – that must be frustrating. If it were an isolated case, I might tend to ignore it, but seeing he has commented on your appearance a few times it may be time to discuss it with him especially since you’ve been seeing him for over 5 years.

    I understand trying not to react particularly in the middle of a migraine attack when all our senses are heightened. Maybe a quick review on your progress or lack there of at the beginning of your next visit is in order before he can comment on appearances.

    Another thought is to write what you are feeling – let it all out – on paper, then destroy it. This may help get all your frustrations out and feel better.

    What do you think?
    Nancy

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  • By Autumn Sparrow

    Hi Nancy

    I like the idea of writing it all out. It usually helps in other areas. I can add his other comments there (usually not appearance I think that’s what threw me off), for the last year hes said I must be depressed or manic as I’d stopped socializing due to my migraines and a torn S1 joint (therapists have said no). So I think I may need to reevaluate our relationship as I’m not making progress and this may be a good starting point to reevaluate things. I sometimes wonder if he’s just as frustrated, as I I am :).

    We always start with my migraine calendars which can be frustrating as my avg. is 22 days a month. Since it’s been this way for so long I’m afraid he’s started to see this as my norm.

    I really appreciate your advice, it’s always helpful having someone who isn’t close to the situation weigh in.

    Thank you

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  • By Nancy Harris Bonk Moderator

    Hi Autumn,

    My first thought was to get another doctor, but I didn’t want to seem harsh. Another set of eye may be exactly what’s needed here. I’m not fond of a doctor throwing around “manic” or “depressed” haphazardly – that alone would send me seeking out the expertise of another doctor.

    To find a true migraine/headache disorder expert take a look at this link; http://www.ucns.org/globals/axon/assets/10300.pdf

    Keep me posted,
    Nancy

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  • By GardensatNight

    I would. I haven’t had the best experience with neuro’s really “getting” the whole picture with migraine. They might know good drugs to prescribe, or be skilled at administering botox, but they’ll make comments like, “I don’t believe in disability. I think it disables people.” Or say, “Come on, is this real?” when I am describing my horrible light sensitivity which is so bad I cannot be exposed to any man made light without triggering a migraine. These are belittling comments and 100% the wrong way to be talking about migraine. Unfortunately, all the neuros in my area are equally awful, so I don’t have choices at the moment, but I would definitely consider what was said to you an inappropriate comment. When I have to get depakon infusions I am so dizzy/loopy/out of it, I have almost fallen trying to get out of the car afterwards. All I can do is lie in bed. I cannot follow what is going on in a book read on my kindle. It is one of the few things that will break up an intractable migraine for me, but it makes me very out of it for a while. If your doctor is so uneducated he doesn’t realize it has those side effects, well, he sounds very uneducated. I’m sorry that was said to you.

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  • By Autumn Sparrow

    Fortunately (I guess) I’ve exhausted most of my resources and had I had to downgrade my insurance to a more affordable plan that he doesn’t take. Funny how these things sometimes resolve on their own.

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  • By Autumn Sparrow

    I had my final appointment with him last week and he’d gone over my records extensively as I’d let him know I was having to switch and would need help getting my meds authorized. He thinks my migraines have been overlapping with clusters which explains a lot and possibly his perception of me at times. Fortunately my new guy specializes just in headaches, dystonia & myoclonus disorders (I’ve been dx w/ forms of all 3), so I’m hoping he’ll b able to get me working again.

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