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Barriers to Migraine Care: Share Your Thoughts and Experiences

We’ve all experienced problems with Migraine care on one form or another. Whether it’s been doctors who don’t understand Migraine, emergency personnel who thought we were “drug seekers,” or other problems. Now, we have an opportunity to not only speak to these issues, but to do so by invitation.

Dr. Elizabeth Loder, a wonderful Migraine specialist and researcher, brought this opportunity to my attention, and said,

“We are especially interested in hearing about difficulties headache patients may encounter accessing treatment, their perceptions of the attitudes of healthcare providers to pain (in the emergency department, for example). They should also feel free to comment on any other pain topic or aspect of headache care.”

The Department of Health and Human Services, National Institutes of Health has requested that the Institute of Medicine address the current state of the science with respect to pain research, care, and education; and explore approaches to advance the field. Specifically, the committee will:

  • Review and quantify the public health significance of pain, including the adequacy of assessment, diagnosis, treatment and management of acute and chronic pain in the United States. This effort will take a comprehensive view of chronic pain as a biological, biobehavioral, and societal condition.
  • Identify barriers to appropriate pain care and strategies to reduce such barriers, including exploring the importance of individualized approaches to diagnosis and treatment of pain.
  • Identify demographic groups and special populations, including older adults, individuals with co-morbidities, and cognitive impairment, that may be disparately undertreated for pain, and discuss related research needs, barriers particularly associated with these demographic groups, and opportunities to reduce such barriers.
  • Identify and discuss what scientific tools and technologies are available, what strategies can be employed to enhance training of pain researchers, and what interdisciplinary research approaches will be necessary in the short- and long-term to advance basic, translational, and clinical pain research and improve the assessment, diagnosis, treatment and management of pain.
  • Discuss opportunities for public-private partnerships in the support and conduct of pain research, care, and education.

The committee would like comments from the public about the its charge. Please let us know what you think about barriers to pain care, opportunities to improve pain care, and groups that may not be adequately treated for pain. The committee would also like to hear from individuals about their experiences seeking pain care or experiences providing pain care.

This is a great opportunity for us to affect change in the future of care for people with Migraine, headache, and other pain issues. I hope you’ll take a few minutes to share your experiences by posting to their online public comment form.

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

  • Jaylene Ancheta
    8 years ago

    I have difficulty finding a Doctor who specializes in Migraines. My current Doctor has actually (recently) told me that he is unable to help me. He now refuses to make an appointment for me if my reasons for wanting to see him are for my migraines. I’m in the process of finding a new Doctor but, many just don’t know enough about migraines. I’ve had experienced some who are willing to listen to my problems but, there’s a lot that they just don’t get. Some have treated me like I’m some sort of hypochondriac or something. It’s not just Doctors either. I find people every where who discriminate against me because of my migraines. Police officers who have stopped me because of a migraine attack who think I’m driving under the influence. Once I pass there blow test and they’re done harassing me, leave me alone with an aggravated migraine and expect me to drive home safely. I was stuck at a store once and unable to do anything but find a corner to curl up in and cover myself up while someone helped themselves to my paid for groceries. People just walked by and did nothing. I have all these problems and I have no where to go for help because people think I’m faking it, or my problem isn’t that serious. I could just go on and on but, this is already long.

  • Jaylene Ancheta
    8 years ago

    Thank you Kim and Judy, and yes, it is a very good thing to have my family there for me when I need them. However, I do feel that the general public really needs to be educated about Migraines. Especially, those who work in places that are there to serve and protect the public. Also, I think it would be great if there were more local Migraine support groups available across the country. I think about this a lot and wish I could do something about it. I’m afflicted with too many migraines to be able to much about it though. So far, I’ve been limited to discussing or posting online and with people I know. Maybe some day, as time goes on there will be more resources available to people with Migraine.

  • Judy Davis Clark
    8 years ago

    I totally agree. I may not have had all the same situations going on with me, but I have found it difficult too to find a doctor specializing in migraines. My heart really goes out to you for having gone through discrimination and being harassed by the police. I hope that you get the help you’re seeking, and Ill be praying for you.

  • Kim Sterns Lien
    8 years ago

    Hang in there Jaylene your daughter is right it is a disability and I’m glad to see you have her support. That is one thing that has always helped me is that my husband and son have also been by my side and understrood.

  • Jaylene Ancheta
    8 years ago

    Thank you Toni. I love you so much.

  • Anntonia Wolf
    8 years ago

    Mom I understand! Just want you to know I’m here for you and I love you… When my panic got to it’s worst I felt like there was no one in the world to help me and I was just going to suffer the rest of my life. You were there right by my side to comfort me and help me stay strong, I plan on doing the same for you. Screw those other people! Haha one day they’ll have their own un-curable disability.

  • Jamie Sohn
    8 years ago

    Lack of meds actually APPROVED by FDA as having an indication for Migraine prophylaxis. This lack of approval hurts us when doctors want to use other meds off-label- meds which are already known to have some success with Migraine but insurance will not pay due to the FDA status…

  • Cyndi Jordan
    8 years ago

    Tried to get a script filled the other day but since it wasn’t approved, they wanted $729 for one months worth!!!!

  • Dawn M Hadland
    8 years ago

    “The committee would like comments from the public about the its charge” Teri – What is the “its” charge? Or is that a typo? I can’t find it in the article…

  • Brigitte Sparrow
    8 years ago

    In general, not enough migraine specialists (the closest one to where I live is 2 states away). My experience with neurologists is the pits, my GP is 10x better, both with treatment & research..not to mention tests & follow-up. I also personally believe that criteria should be changed (especially in the ER) so that all migraine patients must be tested for FVL (Factor V Leiden). I have this blood clot disorder (higher risk of stroke along with migraine disease). FVL patients are extremely limited with meds, and not all FVL patients are taking blood thinners, therefore, the only med I can take for migraine is abortive. Patients who don’t even know they have FVL could be at risk with whatever meds are prescribed for them.

  • Ann Perdue
    8 years ago

    The cost to see a specialist and I have insurance. The cost of the preventative and then after I get a migraine drugs. Migraines a just way to expensive. Not to mention all the fun you miss out on.

  • Teri Cossette
    8 years ago

    Lack of qualified migraine specialists I feel is a large barrier. I am fortunate to have access to a specialist but it sometimes it is months to see him when making an appointment.

  • Migraine.com
    8 years ago

    Share your thoughts about barriers to migraine care with the Institute of Medicine!

  • Kim Sterns Lien
    8 years ago

    I agree with Terri I get them with out any sign also and wake up with one about every morning.

  • Teri Robert
    8 years ago

    These are all great comments. I hope you’ll all please follow the link to the article, then follow the link there to the public comment form and make your comment there where they’re official and will reach the right people. Thanks!

  • Kimberly Rose
    8 years ago

    Last time i went to a specialist in migraines he seemed to only want to treat me if i was able to particiapate in his clinical trials. there was no way that i could drive an hour each way every week.

  • Brigitte Sparrow
    8 years ago

    For FVL patients who are not on a blood thinner, one of the listed side effects of Topamax is “increase in blood clots, deep vein thrombosis.” Doctor told me, no Topamax, Imitrex, etc. for FVL patient. We all do what’s best for us and I have deep respect for my fellow migraineurs. But this is exactly why I made my earlier comment. We need super-duper educated doctors/specialists to deal with our unique and special needs, and hopefully not prescribe something that could do us in! I wonder if the insurance companies, Medicare, etc. won’t approve of an FVL blood test, so doctors don’t suggest it to their migraine patients…wouldn’t surprise me.

  • Tonia Mcintosh
    8 years ago

    i”ve never had a migraine specialist, i never evem heard of it before i got on this site. they always tell me to go see a neurologist, and have a mri done. which i’ve had several mri’s and ct scans. they always come back normal. and when i go to the er they dont wanna give me anything that may work. they give me imitrex. which doesnt do anything for me. the one thing that did work for my last episode was treximet and i had to get that from a friend.

  • Teri Cossette
    8 years ago

    Lack of migraine specialists is a barrier. It takes months to see my specialist when I make an appointment.

  • Sherri Tuders Hawkins
    8 years ago

    I got really sick on Topomax darnit

  • Jennifer Johnson
    8 years ago

    TOPAMAX!!!!!!! CHANGED MY LIFE!!!!!!!!!!!!!!!!1111

  • Holly Samac
    8 years ago

    Oh my God do I have some horror stories for you guys…just you wait. What a relief to be ASKED to talk about our pain and suffering rather than pretend it’s nonexistent.

  • Brenda Martel Sylvestre
    8 years ago

    That’s when I seem to really get them bad is when P. M.S for at least four or five days !

  • Terri Williams-Yeadon
    8 years ago

    I take topmax every night and when they get bad engough I go to my doctor and have to get a shot for them

  • Migraine.com
    8 years ago

    Terri-The IOM is interested in barriers to migraine care. This includes access to treatment, how you are treated in the ER, etc. You can read the full article here: http://migraine.com/?p=5144

  • MaryAnn Lisi
    8 years ago

    i’m suffering now from a big one AND pms!!!!

  • Terri Williams-Yeadon
    8 years ago

    I dont think there is such a thing as a barrier to a migraine I get them with out any sign that one is even coming on I wake up with them and it is a pain.

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