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I need help

My daughter is 22 years old. When she was 16 she got a Migraine headache that never went away. She has been to numerous doctors in our area over the last 5 1/2 years and has found no relief or any answers or support. She has had most tests done but have had many mistakes made in these tests (I believe).

Our insurance company is now saying that the insurance company will fully fund her treatment at any one of the top 10 Migraine Centers and all I have to do is find the right one, if I do it in the next couple of weeks. This has been a daunting task. All of the Doctors that we have seen don’t want her back or suggest that she is making it up. She had to drop out of school in the 10th grade and has virtually dropped out of living. I need to find a physician that is top in the field that would be willing to take her on– very soon. We live in the Midwest and wherever we go would probably be difficult, but I have a “free ticket” to choose. I need to see some evidence of their area of expertise. Any suggestions? I need help.

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Comments

  • MilisasMom author
    6 years ago

    Thank you all so much for sharing your stories and advice. I used the United Council for Neurologic Subspecialties for Migraine Medicine as my guide and looked up Doctors listed in the top ten Migraine Centers in the US. I have come up with a list of 5 Doctors at one location and one that specializes in Intractable Migraine. I never knew that Neurologists can specialize. I am so grateful for your help and this website for giving me a hand in researching. We are waiting for approval from our insurance company now. If they don’t approve coverage I don’t know what we will do next. Now that I’ve seen the pricetag for this program I don’t know how we would be able to afford it if they don’t cover it. It’s so expensive and we’ve exhausted all our savings over the last 5 years of dead ends. Thanks again. I’ll update after we either receive a consultation or are denied.

  • Katie Smith
    6 years ago

    At 56 yrs of age, I have had migraines since age 11. The most comprehensive care I have experienced was with http://www.mhni.com in Ann Arbor, Michigan. Ph 734-677-6000. Once admitted your daughter will GO to the conference room each morning for rounds. You will meet with a dozen or more specialists in different fields, who will collectively gather info. Once your meeting is finished, the doctors will combine opinions and develop a plan of action, which will begin usually the first day. I encourage you both to immerse yourselves in every class possible and take full advantage of the techniques and medical protocols they will design for her specific migraine treatment. I was there for about 3 weeks in March of 2011. They were able to help me immensely, however after taking a couple of the meds for awhile I had to re-adjust due to side effects. I am seriously considering returning for a follow-up visit to address my migraines with different meds. The entire staff is dedicated to helping those with migraines and headache pain. You may feel a bit overwhelmed and perhaps a little put off at the very first call or visit, but understand that they are only trying to determine if they can help or not. This has been my experience and hopefully if you choose MHNI, your daughter will reap the benefits that so many of us have. God bless!

  • flylikeladybird
    6 years ago

    I definitely feel her pain…literally. I am 35 years old and have had chronic migraines since the age of 8. They are so frequent my insurance company foots the bill for Botox every 3 months along with all the various medicines I take for pain. I’ve been to several headache clinics in NYC. Maybe if you called them, they could suggest practioners in your area? Montefiore, NY Headache Center, and Beth Israel Hospital are all places I have gone to for treatment. They have all had some degree of success but I have so many triggers that nothing really “cures” me. Also, via trial and error, I realized that my seasonal allergies really aggravated my migraines. My primary physician gives me allergy injections once a month and they help. If she has allergies to anything, that might be worth looking into. Hope this helps.

  • mmjardel
    6 years ago

    I had the same experience – all the doctors I saw said I was making it up or oh it isn’t that bad. I now see Dr. Mollie Johnson UCLA Neurology Head Pain Clinic. She listened, she understood, she believed and is now treating.

  • nwmigraineur
    6 years ago

    I see Dr Traci Purath – she is wonderful. She is currently practicing in SE Wisconsin. She has been practicing migraine medicine for over a decade, and is always reminding me to never give up. As for your insurance company, you have my sympathies. It will be necessary to see the migraine specialist that you choose for multiple visits, until a treatment is found that brings your daughter’s migraines under control. This may be a combination of medicines, supplements and lifestyle changes. May you be blessed on this migraine journey.

  • jgremly
    6 years ago

    Lisa, I’m so sorry to hear about your daughter. How awful to have doctors suggest she’s making it up. I can only recommend what’s worked for me — it may be a bit far for you, but The Pain Center at Cedars Sinai has been wonderful for me. Dr. Steven Graff-Radford is the director and has been my main physician, but all of the doctors and staff are great. I hope your insurance company realizes that your daughter will need more than one visit to whatever specialist you find…migraines take ongoing treatment!
    Cedars Sinai Pain Center 310/423-9600
    https://www.cedars-sinai.edu/Patients/Programs-and-Services/Pain-Center/

  • jgremly
    6 years ago

    Oops, meant to include in there that Cedars is located in Los Angeles. Good luck!

  • wendykerr
    6 years ago

    Try Barrows in Phoenix Arizona. They have several migraine specialist in addition to amazing treatments.

  • Ellen Schnakenberg
    6 years ago

    Lisa, Please check out these links that I hope you’ll find very helpful:

    How Are Migraine Specialists Different? http://migraine.com/blog/how-are-migraine-specialists-different/

    Is It Time for a New Migraine Doctor? http://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/

    Looking For A Migraine Specialist? http://migraine.com/blog/looking-for-a-migraine-specialist/

    Christy is very correct – it is the doctor that makes the difference, not the clinic.

    I hope you’ll find these links helpful. 🙂

    ~Ellen

  • Christy
    6 years ago

    I’m not sure where in the Midwest you’re located, but I can recommend the Diamond Headache Clinic in Chicago. Your experience will be based on the doctor you get, so I would recommend asking for Dr Diamond. You’ll find mixed reviews from migraineurs about the place, but it’s really about which dr you get and how much you (and your daughter) invest in the time you spend there. I learned more about migraine when I was with them than from any of my previous doctors. Good luck! I hope you find someone who works out well for your family.

  • TaylormadenWV
    6 years ago

    I’m in WV and several local neurologists, both migraine specialists, have tried to get me into the Diamond Headache Clinic due to chronic migraine problems (5 years and counting). I’m hearing great things about this facility, only wish I could get my insurance provider to authorize a visit.

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