[UPDATED: 5 March 2018] Migraine patients now have an opportunity to jump the waiting list and get access to international migraine experts at the Migraine World Summit.
Over 30 doctors, professors and specialists have gathered from world-leading institutions such as Harvard Medical School, the Mayo Clinic, Stanford Medical, the Cleveland Clinic and the International Headache Society to help answer some of the most difficult questions for patients in desperate need of relief.
Migraines are more common than diabetes, epilepsy, and asthma combined. [i] There are 956,000 thousand migraine attacks every day in the US[ii] with around 37 million affected.
Migraines destroy quality of life. It can affect not just your physical well being, but your relationships, family life and your ability to keep a job and enjoy a career.
There is still social stigma associated with migraine. Chronic migraine patients experience more stigma than epilepsy. Many people feel guilty or ashamed to admit they have a migraine. Migraines can also lead to depression and anxiety as many struggle with the isolation, lack of progress and lose hope.
Research shows a direct link between the frequency of migraine and a person’s quality of life.
The Migraine World Summit is a free online event for migraine sufferers from April 18-26, 2018.
Migraines were recently found to be the 6th highest cause of disability worldwide in terms of years lost to disability [iii] A severe migraine can be as disabling as quadriplegia or active psychosis.[iv]
Despite the prevalence of migraine, it remains under diagnosed and under treated with less than 50% of patients consulting a physician.[v]
For those who do seek help, finding the right doctor can be difficult.
Just 4 hours are committed to headaches disorders in undergraduate medical training worldwide.[vi]
The US is one of the few places where there are subspecialty certifications for headache medicine, yet there is only 1 headache specialist for every 85,000 patients.[vii] This shortage is even worse elsewhere.
The Migraine World Summit provides unprecedented access to dozens of experts for those suffering from this debilitating disorder.
Headache specialist Deborah Friedman MD is one of the speakers at the event who is a Professor of Neurology & Neurotherapeutics and Ophthalmology at the University of Texas Southwestern Medical Center, where she directs the Headache and Facial Pain Program.
“Specialists require referrals, patients may incur significant costs and there can be waiting lists.
The Migraine World Summit is your opportunity to jump the queue and get into the room with the doctor to hear the latest best practice and approaches being used from some of the best in migraine.”
The Summit now available. Claim your free ticket now >>
Learn From Over 30 World-Leading Migraine Experts, Doctors & Specialists
[i] Headache Disorders – not respected, not resourced. All-Party Parliamentary Group on Primary Headache Disorders. 2010. Migraine Trust
[ii] Steiner TJ et al. The prevalence and disability burden of adult migraine in England and their relationships to age, gender and ethnicity. Cephalalgia. 2003;23(7):519-527.
[iii] Steiner, Timothy J., et al. “Headache disorders are third cause of disability worldwide.” The journal of headache and pain 16.1 (2015): 1-3.
[iv] Blumenfeld, A. M., et al. “Disability, HRQoL and resource use among chronic and episodic migraineurs: results from the International Burden of Migraine Study (IBMS).” Cephalalgia 31.3 (2011): 301-315.
[v] Pavone E et al. Patterns of triptans use: a study based on the records of a community pharmaceutical department. Cephalalgia. 2007;27(9):1000-4.
[vi] World Health Organization. Atlas of headache disorders and resources in the world 2011.
[vii] Mauser, Emily D., and Noah L. Rosen. “So many migraines, so few subspecialists: Analysis of the geographic location of United Council for Neurologic Subspecialties (UCNS) certified headache subspecialists compared to United States headache demographics.” Headache: The Journal of Head and Face Pain 54.8 (2014): 1347-1357.
Your letter to those without migraine was very moving and reveals how many of us with chronic migraine feel – isolated and alone. Like you, I have had chronic migraine for 9 years and have lost my career, many friends and quality of life. It can be so difficult to explain to people who do not suffer this debilitating disease just how it feels. Thank you for your lovely letter – it means a lot to me. Do you know if there is a migraine support group in Sydney? I would be interested in joining if there is one. I recently made a new friend who has been chronic for 25 years and it is so nice to be able to contact her regularly to talk. Wishing you all the very best and keep up the good work!
Thank you for your warm feedback. I don’t know of any support groups within Sydney (Australia). If you were interested in organising one then Headache Australia might be a good place to start. They could possibly post a message our to their Facebook group for you. Take care.
Hi Carl and Belinda , this is another Belinda and a migraine sufferer in Sydney . I would love to get in contact with you if you are still following this thread
You can email me through the "Contact" link at the bottom of this page Belinda 🙂
Hi Carl, I suffered from periodic migraine until 2013 when they became chronic, upending my life, and as you so eloquently expressed, left me in a world of isolation. My initial doctor was reluctant to even refer me to a neurologist; and had a new gynecologist taking over my previous doctor’s practice not honored a request for a referral, never would have seen one. They are in absurdly short supply; and appointments are scheduled 6+ months out. My first neurologist was kind and worked with me trying different medications that failed, however, appointments were often postponed until I learned he had retired. My second neurologist flew down from Portland once a month to see patients. In my first visit, I was amazed at his understanding/compassion especially because I was suffering so much from the pain, and I was aware of increasing memory loss. I left with a list of tests he wanted completed before my next appointment 4-5 months later. That appointment was postponed three times; and I was notified he was retiring to care for his wife who had been diagnosed with cancer. All the while, I was struggling with unbearable pain from migraines 4-5 days a week; aside from a script for hydrocodone I rarely could take because I couldn’t keep the medication down even on days when I could feel the migraine coming and took Zofran for nausea. He, like the other neurologists who would follow would sympathetically let me know my condition would likely get worse over time as would my pain.
As a teen I had lived for days in the sunlight, and spent summers on the beaches of the east coast where i had planned to retire to one of the homes I admired in my youth. Instead, I live 90% of my time avoiding light, noise, loud smells, and unexpected intrusions by isolating myself in a blacked out bedroom dreading any cause to leave my coveted space and go out to into the public. Because of my insurance I was regulated to a local clinic and have to routinely see a nurse practitioner–not knocking nurse practitioners–but it is a busy place, often filled with noisy children, and her prescriptive power is so limited, aside from an occasional shot of Toradol which allows me a few hours of sleep but doesn’t stop the migraine, I was left "hanging" for a couple of months until I found the last neurologist in the area accepting my insurance and requested a referral.
I saw him yesterday after waiting an hour and spending 20 minutes with his nurse who was compassionate, understanding, and informative as we discussed possible pain relief from low dose patches that would eliminate my difficulty with taking pills. He understood my frustration at being treated differently since I was no longer working and in need of pain management—even though I had never taken all of my original prescription—much less asked for a higher dosage. He had informed me that other states, including Alabama and Georgia, where I have family, are traditionally less judgmental of pain patients and often more helpful. When the doctor breezed in he asked few questions, asserted firmly that his practice did not provide any prescriptions for pain management, and aside from ordering a new MRI to look for further changes, aside from Botox, he had nothing to offer me. Now, I’ve tried every medication suggested/prescribed by my prior doctors, and the only one I rejected was Botox because of the potential side effects and the need to have injections every three months for the rest of my life. Essentially, I had wasted a total of 2 1/2 hours on what felt like drive-thru medicine. My daughter, a senior in high school, was with me and her questions about causes of my migraines, or other suggestions for treatments were disregarded along with her concerns about my increasing loss of memory. Since I also suffer from PTSD/Anxiety, I had been told by my first doctor that the symptoms would overlap with those of dementia on testing, but because Alzheimer’s does run in my family, it has always been a concern; one my previous doctor had promised he would investigate thoroughly. Until 2013, I was a professional earning just under $70,000 a year, never expecting that could end overnight. Going through the SSDI process and getting documentation from doctors who despise such requests—took 4 years as I struggled to survive financially raising my last child, and the constant feeling of guilt I wasn’t the mom to her that I had been to her older brother, remains pervasive though I know it isn’t my fault. The massive hassle to maintain healthcare under the Obamacare fiasco, and again when I was placed on Medicare caused the added stress of finding qualified carers that would accept my insurance–essentially, like prescription drug companies determining which medications can be prescribed, becoming those "death panels" people had scoffed at when first mentioned.
I know the "opiod epidemic" propagated in the media ignores the fact that some of those users were unchaperoned, irresponsible teens who misused their medication, along with the majority who would have taken any drug available to get some type of high. But, as with the use of valium and then Xanax over the years, those who used opiod medications responsibly have been unfairly penalized because of an irresponsible minority, and a political agenda driven by parents who wish to assuage their guilt by blaming something/anyone else for their loved one’s addiction. They also fail to address the percentage of those who began using illegal drugs when they were unable to find qualified professionals who could adequately treat their pain.
Before I left my doctor’s office yesterday, I told him plainly that I was focused on quality of life–which in my case has continued to decline for five years. I’m aware of studies which indicate the lifespan of those with chronic migraines is approximately 10 years. But ultimately, if doctor’s cannot (or will not) treat patients in pain with chronic conditions, we should put more effort into demanding greater choice over what happens when we have simply had enough—essentially recognizing we should have the same freedom as those in progressive countries such as Belgium, the Netherlands, and Switzerland which allow those with chronic/terminal illness or psychological distress to determine the time of their death, unlike the few states which demand you have an incurable disease with less than six months to live.
I know I want to see my beautiful daughter graduate from college in five years, and perhaps find the love of her life and have children. But I also know there will be a time when my pain prevents me from finding pleasure in such thoughts, and I will seek treatment, in one form or another, in a country that values their patients health as well as their rights when it comes to healthcare.
Some valid points Rachel that you mentioned above. Thank you for sharing.
Healthcare and doctor expertise in migraine is not what it could be and it is disappointing and frustrating at times. All we can do is empower ourselves with the best knowledge and information to get the most from our doctor and other stakeholders.
Rest assured there are people working to change the level of knowledge of doctors and make appropriate treatments easier to access – but the health industry is slow moving and it will take time.
It is nice that your talking about migraines headaches but to be honest I have yet to meet a doctor who knows what he is talking about when it comes to headaches. They just write prescriptions and if that does not work give you another one. My son has suffered with migraine since he was 12 he is now 25 and still gets then I have now given up with doctors because you can not help this may be a strong statement but if you can help show me one patient that is now ok because ov your help and guidence. Yes he has had mris and seen the top specialist for migraines in the uk who attends these seminars etc etc. MRIs thankful are clear he had one at 15 years and 23 years. If I am wrong and you are better than what we have tried (acupuncture) and son well show me you can cure it. What really is annoying is that this is such a commen theme amongst people and the medical world don’t have a clue what to do.
Go to this blog or that blog what your really saying is my knowledge is limited in this field I can not help you.
Hi Dacky, I’m sorry to hear about your son’s lack of treatment. The vast majority of patients can be helped. It starts with self-education. There is much of our migraine condition that we ourselves can influence. But to get the best results you really need to partner with a doctor. You can’t do it alone or without support.
Myself (Carl) and the co-host for the Summit (Paula) both had chronic migraine and are now at episodic. For both us, getting a deep understanding of migraine and our condition was the secret to our turning points. We too, struggled with doctors who weren’t able to break our chronic migraine. But it is possible for those to take the initiative themselves and either partner or lead the discussion with supportive clinician(s).