How to Live Your Best Life as a Migraine Sufferer
Dawn Buse, PhD & Jelena Pavlovic, MD, PhD
June 29, 2016
Welcome! Thank you for joining us today for “How to Live Your Best Life as a Migraine Sufferer”. This Facebook chat will be hosted by Dawn Buse, PhD and Jelena Pavlovic, MD, PhD and will cover topics such as:
– Strategies for migraine prevention, including identifying and avoiding triggers
– Tactics for getting through a migraine attack or cycle of migraine, when it occurs
– Treatment options - Reducing the burden of migraine in your daily life (work, school, leisure time) - Minimizing the impact of migraine to your family and loved ones
– And much more!
Dawn C. Buse, PhD, is a health psychologist and researcher who specializes in headache and pain. She has more than 100 publications and provides clinical care to people with migraine using include cognitive behavioral therapy, guided visual imagery, biofeedback and mindfulness training at the Montefiore Headache Center in Bronx, NY. She is also on the advisory board of Pain Pathways Magazine. You can read her research and also try free guided visual imagery and relaxation exercises on her website at dawnbuse.com. You can follow her on Twitter at @dawnbuse.
Jelena Pavlovic, MD, PhD, is an Assistant Professor of Neurology at the Albert Einstein College of Medicine. Dr. Pavlovic earned her B.S. from Ramapo College of New Jersey where she double majored in Biology and Chemistry while on full academic scholarship. She completed her MD and PhD in Molecular Medicine at Pennsylvania State University College of Medicine. She was an intern in internal medicine at St. Vincent’s Hospital in New York City and a neurology resident at the Albert Einstein College of Medicine/Montefiore Medical Center, where she was also a Chief Resident. She subsequently continued her training as a fellow in Headache Medicine and Facial Pain at the Montefiore Headache Center.
Now, please join us in welcoming Dr. Buse and Dr. Pavlovic!
Dr. Buse: I am honored to be here to participate in this chat on migraine during Migraine and Headache Awareness Month. I look forward to answering your questions!
This is the second PainPathways Magazine Facebook chat on migraine that I have participated in. The first was in June of 2013. A lot has happened in the treatment and science of migraine since then. We will have a lot to talk about!
Jess C: My migraines are triggered frequently as a result of my fibromyalgia constricting the muscles in my neck and shoulders. What medications, treatments, and remedies can you suggest? I’m up for anything! These migraines come close to making it impossible for me to work.
Dr. Pavlovic: Muscular tension in the neck and upper back are reported as migraine trigger by many patients, including those who do not have fibromyalgia. We often recommend muscle relaxants in addition to other migraine medication for treatment of constricting muscles. Many patients find good relief with trigger point injections into the back muscles. Warm compresses and acupuncture are common non-medication approaches to treatment. Finally, physical therapy can be extremely useful in a long run, particularly learning scapular stabilization exercises which help adjust positioning of neck and upper back to avoid recurrent irritation and injury. In your particular case, adequately treating fibromyalgia, which seems to be the primary trigger, would be the appropriate course of action in addition to above mentioned approaches.
JP: Neck stretches that I learned in physical therapy and warm compression seems to help with my fibro flares.
PainPathways Magazine: JP, you might enjoy: Frozen Eucalyptus Essential Oil Towels For Cooling Headache
James: I find that a lower tannin diet helps mine tremendously by removing the common trigger foods.
Brittany asked: What are some of the best headache clinics for chronic migraine for when headache specialists have run out of ideas for you?
Dr. Buse: There are many excellent headache expert physicians and headache centers in the US and the numbers are growing every day. There are more than 600 certified (UCNS) headache expert physicians in the US. There are several places where you can search for providers including:
PainPathways Magazine: This article may be helpful in explaining to your loved ones why a migraine is not just a headache: 5 Reasons a Migraine isn’t “Just a Headache”
Lisa A: Any news on the new meds in clinical trials that affect CGRP?
Dr. Pavlovic: The news from Phase II trials is that the CGRP monoclonal antibodies appear to be effective and most importantly appear to be safe. An interesting study presented at a recent AHS meeting showed that the CGRP antibody improved wellness on headache free days in addition to decreasing pain on headache days. These are very interesting and promising results and of great interest to the entire headache community. Here is one you may want to read: CGRP Receptor Antagonist for Migraine Increases Odds of Being Pain Free in Two Hours, But Falls Short in Reducing Severity in Remaining Patients
Anne: How do one go about reducing the impact on our loved ones like our partners and children?
Dr. Buse: (response part 1) This is a very important question and one that hits home for many people. Migraine can be painful not only for the person who has the condition, but also for the people they love. It can affect work, school, family time, vacations, hobbies, chores and all aspects of life and of course these effects can result in family members feeling frustrated, sad, and guilty, just to name a few possible common responses.
We recently conducted research where we asked not only people with migraine but also their spouses and children how migraine affects them. We found that there can be an effect on all family members. You can read about our research here: Impact of Migraine on the Family: Perspectives of People With Migraine and Their Spouse/Domestic Partner in the CaMEO Study
Patti asked: How long before the FDA approves the procedure of a nasal drip for migraines? Are there any new developments are being made on the causes & treatments of migraines? I swear mine are caused by a terrible whiplash incident when I was a child.
Dr. Pavlovic: If you are referring to the sphenopalatine ganglion procedure, which is applied by squirting anesthetic fluid into the nose (https://americanmigrainefoundation.org/…/sphenopalatine-ga…/), 3 devices for delivery of the anesthetic have already been approved by the FDA.
The research focusing on causes and treatment of migraine is ongoing and the following website provides a considerable amount of information on the topic:
Anne: How does one go about reducing the impact on our loved ones like our partners and children?
Dr. Buse: (response part 2) The good news is that there are things that people with migraine can do to help reduce the burden for their children and spouses as well as themselves. These include:
- Model calm coping behavior – Children take cues from their parents as to how to react to situations. It is important that that parent discuss migraine clearly and calmly and try to avoid expressing their own feelings of fear, anxiety, or frustration with younger children. Parents can choose to share their feelings with adolescents speaking on an age appropriate level to validate the adolescent’s feelings and so that the adolescent knows that the parent may share their feelings about the disease. For example, a parent may say to a child, “I know that you are disappointed that I cannot go to the beach with you today due to a migraine. I want you to know that I am disappointed too.”
- Educate – It is important to explain migraine to the child using an age appropriate level of information and terms that the child will understand. Ideally this should happen before or in between attacks if possible when the parent is able to best communicate. It may be helpful to have a second parent or other family member involved in this discussion if possible. This may include explaining what the parent experiences during the migraine attack (including all phases: prodrome, aura, headache and postdrome) so that the child knows what to expect. Parents should reassure the child that there are no long-term consequences to the attacks and the parent will return to their normal level of functioning after the attack has passed. Children can imagine the worst so a parent should explain explicitly that they will not die or be permanently disabled by the attack. In the case of daily migraine or continuous pain, the parent should explain that they are under care of a doctor and have a treatment plan (if this is the case) and explain that they are working with their doctor to reduce the number and severity of migraine attacks. Parents should explain their treatments to a child and explain that these will help them manage the attack and feel better as quickly as possible.
- Maintain consistency – To the greatest extent possible, try to maintain routines in the household. A chronic illness can be disruptive, and the sometimes random occurrence of migraine attacks can make planning very difficult. If parents can set up routines that can continue even in their absence, children will not experience as much disruption. For example, a parent may want to prepare several dinners in advance and have some in the freezer for evenings when he or she does not feel well enough to cook. School supplies can be packed and kept in the same location every evening, making a morning with a migraine easier to navigate. Or preparation for a special event such as shopping or packing can occur in advance in case a last minute migraine makes preparation difficult. Also empower children to engage in self-care and household actives that are age appropriate on their own. Children can be taught to help in household chores and responsibilities and be given freedom to make some predetermined choices and decisions in the house when the parent is unavailable to do so. A “migraine day” plan can even be arranged in advance both for school days and days at home with checklists for school days and fun options for days at home.
- Allow children to help – Give children age appropriate tasks that they can do to help their parent during a migraine attack. Feelings of helplessness can lead to fear, anxiety and depression. By allowing children to help during an attack they not only make the parent feel better, but they feel empowered and more confident too. This may range from asking a young child to bring a cool washcloth, to asking an older child to bring a snack or medication if a parent is disabled by a migraine.
- Ask for and accept help from others – Parents should ask for and accept help from others including family, friends, and other parents. If people ask if they can help, say yes. Others can help with household responsibilities, driving, shopping, running errands and childcare on days with migraine. Allowing people to help also makes them feel empowered and reduces feelings of helplessness and worry.
- Let go of expectations and worries – Know that not everything will get done and not everything will be done perfectly but that is OK. Remember that children are resilient and growing up with a parent with migraine will not permanently harm their sense of confidence or happiness, in fact it may help make them stronger and more flexible adults who are better equipped to face the challenges that life offers.
- Seek professional help when needed – If stress, anxiety or depression becomes overwhelming for you or your child speak with your doctor or a mental health professional. There are psychologists (like myself) who are specially trained to work with people with chronic illnesses and their families. Some of the work will include learning coping skills, stress management and improving family communication. To find providers and resources see: http://dawnbuse.com/resources.html?t=0
PainPathways Magazine: Here’s something on new treatment options you may or may not be aware of: http://bit.ly/29rMcHM
Lisa & Christina both ask: Any news on the new meds in clinical trials that affect CGRP?
Dr. Pavlovic: The news from Phase II trials is that the CGRP monoclonal antibodies appear to be effective and most importantly appear to be safe. An interesting study presented at a recent AHS meeting showed that the CGRP antibody improved wellness on headache free days in addition to decreasing pain on headache days. These are very interesting and promising results and of great interest to the entire headache community. Here is one you may want to read:
Patti M: Have they found any new causes or treatments for migraines?
Dr. Pavlovic: The migraine research has been expanding tremendously in the last decade and particularly in the last three years. We have a completely new class of medication (CGRP antibodies) in clinical trials which are showing tremendous promise in migraine treatment. Neuromodulation is another new and attractive venue of migraine research – particularly non-invasive modalities. Clinical trials are ongoing in all of these – for more information you can go to https://clinicaltrials.gov/ Good luck!
Morgan: What options are available other than medications, that can minimize the intensity or frequency of my migraines?
Dr. Buse: This is a great question Morgan. I’m glad you asked. There are a range of safe and effective pharmacologic (medication) and non-pharmacologic (non-medication) treatments available. Non-pharmacologic treatments for migraine management can be used in conjunction with meditation treatments or on their own. They include biofeedback, cognitive-behavioral therapy, relaxation practice and other forms of stress management. For links to find a psychologist who can guide you through these interventions see the resources listed here: http://dawnbuse.com/resources.html?t=0 You can also try a relaxation exercise for migraine at http://dawnbuse.com/relaxation.htm.
Another important aspect of migraine management is managing triggers and maintaining healthy habits. Triggers for attacks can include stress, relaxation after a stressful period, too much or too little sleep, skipping meals or dehydration, bright or flickering lights, weather changes, certain foods and hormonal factors. Trying to keep a regular schedule and a healthy lifestyle can make a big impact. It can be helpful to keep a diary to notice which factors may trigger a migraine and to live a healthy lifestyle by getting plenty of sleep, exercise, eating well, and managing stress.
Lisa A: Is there indications that if a patient responds well to triptans and Botox that the new meds – CGRP antibodies will most likely be effective?
Dr. Pavlovic: We do not know that yet. It would be reasonable to hypothesize that such would be true given the known mechanisms of migraine and triptan and Botox action, but we do not have an answer to that question yet.
PainPathways Magazine: Here is one person’s experience with Botox as a treatment for her migraine headaches: Botox for Migraines: Does it Work?
So many people ask me about my Botox for migraines and if it works. It does, for me. It has been life…
Christina asked: Any update on how soon the CGRP drugs will be released to the market for use?
Dr. Buse: They are currently moving from Phase II to Phase III trials and what point they will be seeking FDA approval. This will likely take a few years. The link provides the summary of clinical trial phases. https://www.nlm.nih.gov/services/ctphases.html
PainPathways Magazine: For those looking for other things they can do to reduce the impact of migraine headaches in their home environment, this article has some good ideas: http://bit.ly/29IBKOE
Pain and Your Environment: What You Can Do!
Lisa M: I recently read that a MTHFR gene mutation may contribute to migraine. Do you think that is worth pursuing?
Dr. Pavlovic: An MTHFR gene variant has been implicated in migraine pathophysiology for some time now. There is no specific treatment for individuals who have this gene variant and we do not know at this point how exactly it contributes to migraine. This gene has also been implicated in an increased risk of stroke (independent of migraine). While it may be informative to have the information of MTHFR status, I would not recommend doing it for screening purposes as it is unlikely to at this point affect your treatment.
Christina K: Do you recommend that people go to the ER when they are having a severe migraine attack? Are there any suggestions or rules on when or when not to go to the ER. When I have my most severe migraine attacks, I can’t even bear to think of going to the ER. I simply make my room dark, take some medications, grab a cold pack for my head, and go to bed. I will eventually fall asleep and that is my approach. Should I actually be going to the ER instead?
Dr. Buse: At the Montefiore Headache Center our goal is to make sure that patients have personalized, optimized treatment plans which may include acute, preventive and behavioral approaches. If someone has acute and rescue medications already at home they may be able to avoid going to the emergency department. So, first off, I would recommend that anyone living with migraine be diagnosed and create a complete treatment plan with a physician.
If someone is already seeing a physician, I would recommend that they talk with him or her about when to go the ED and create a document with diagnosis and ED treatment plan that the patient can take with her or him to the ED.
Some headache centers or hospitals offer infusion treatments right in their office that someone can have instead of going to the ED.
Here is an informative article by Paula Dumas of Migraine Again on “What really happens when you go to the emergency department for migraine”.
Christine K: Do you have any suggestions for weather triggered migraines? Right now, they are the worst for me and the most resistant to any abortive medications or alternative approaches. I basically have to wait out the front. If the front sits over my area for 4 days, I am in hell for 4 days. The abortive meds simply reduce the pain a little bit but then it quickly goes back up to the pre-abortive pain level because the weather front is still present. Any suggestions on the best places to live for people who suffer from weather-triggered migraines? Do you have any suggestions for weather triggered migraines? Right now, they are the worst for me and the most resistant to any abortive medications or alternative approaches. I basically have to wait out the front. If the front sits over my area for 4 days, I am in hell for 4 days. The abortive meds simply reduce the pain a little bit but then it quickly goes back up to the pre-abortive pain level because the weather front is still present. Any suggestions on the best places to live for people who suffer from weather-triggered migraines?
Dr. Pavlovic: Weather is sadly a common migraine trigger. I say sadly because whether is out of our control. One can avoid drinking wine, but is difficult to avoid weather. The most common weather related issue is the drop in barometric pressure. Therefore, avoiding areas with significant barometric pressure changes is helpful. Places like deserts or mountain regions with constant climate are likely ideal.
Donna G: Do you know anything about epigenetics for the treatment of migraines, specifically XRMD and Dr. George Rosalie in Cleveland, Ohio?
Dr. Pavlovic: I am not familiar with that program or Dr. Rosalie. We DO NOT have any epigenetic based treatments for migraine at this time.
Lisa A: There’s a huge shortage of migraine specialists resulting in many patients not getting diagnosis and treatments. Is this being addressed? What can patients do to encourage/support this specialty?
Dr. Pavlovic: We hear you. Headache specialists are relatively rare but our numbers are growing primarily due to the efforts of the American Headache Society (NIH). The National Institutes of Health (NIH) and the National Institute of Neurological Disorders of Stroke (NINDS) have put special emphasis on funding chronic pain related research which includes chronic headache and migraine http://www.ninds.nih.gov/diso…/chronic_pain/chronic_pain.htm.
But training highly skilled headache practitioners is not only time consuming but costly. By sharing their stories of how significantly their lives are being affected by these non-fatal diseases patients can hopefully bring about the change in the national conversation where the full scope of burden of living with pain is recognized and no longer stigmatized thus leading to real change in our cultural approach to treatment of pain which would hopefully mean more doctors being trained.
Linda: I have complex migraine disease and I would like to get more educated on this condition.
Dr. Buse: Hi Linda, I am sorry to hear that. But it is wonderful that you are wanting to get more information. It is important to get information from trusted sources such as your doctor, hospital or well known organizations as there can be myths and misperceptions shared online. So I recommend talking with your doctor first. Pain Pathways printed magazine and online version has lots of good information for living well with migraine and other chronic pain conditions.
There are several additional excellent sources of information available online. Many of them have Facebook pages and twitter accounts. They include:
The American Headache and Migraine Association is a patient organization which you can join. They host an annual patient conference and just hosted a terrific conference a few weeks ago in San Diego. Best wishes in your search for information and healing.
Jeanette: Another excellent resource Chronic Migraine Awareness, Inc react-text: 73 www.chronicmigraineawareness.com /react-text
CMA is a 501c3 nonprofit organization committed to supporting and educating those who suffer from chronic migraine, empowering them to be their own advocate and alleviating the stigma associated with this disease.
PainPathways Magazine: In case you missed the PP post this week, read an article on the relaxation techniques recommended by Dr. Buse: Got a headache? Try breathing!
Ginger J: My neuro referred me to PT to help with migraines thinking it came from neck tension. But the PT made my migraines worse. It was stretching, a couple exercises for posture, manual therapy and traction- nothing too intense. I have POTS, Addison’s, Fibro and EDS. Is this unusual to have this response to PT or have you seen it before? My PT thought it was odd.
Dr. Pavlovic: Hi Ginger, sorry to hear that Physical Therapy made your migraines worse. In general, physical therapy can be extremely useful in migraine, particularly for the associated neck and upper back pains. The goal is to learn exercises which help adjust positioning of neck and upper back to avoid recurrent irritation and injury. In your particular case, the other diseases may have contributed to worsening. I have certainly see that happen in a subset of patients. Some patients will also experience immediate worsening after PT – sort of like muscle soreness following exercise – which then improves with their overall PT work and they eventually see significant improvement.
Dr. Buse: Below are links to two podcasts all about migraine in case folks are interested: Making Sense of Your Migraines
Kim B: Do the muscle relaxant medications cause rebound headaches? What are the preferred medications?
We don’t believe that they do. Common muscle relaxants that we use are cyclobenzaprine, tizanidine, baclofen. I instruct my patients with migraine and muscle spasms to take them as treatment for acute attacks or to take before going to sleep (often for a week or two every night if they are going through a rough patch). They can make one sleepy which is important to be aware of.
Dr. Buse: People often ask what causes migraine. Migraine is most likely caused by a combination of genetic and environmental factors. Someone with one parent with migraine has a 50% chance of inheriting the disease and someone with both parents with migraine has a 75% chance. More than half of people with migraine have at least one close relative with the condition.
Dr. Buse: Through our research we have found that less than 50% of people with migraine in the US are diagnosed, and even fewer are treated with migraine specific medications. If you have severe headache that interferes with your ability to function and is associated with sensitivity to lights and sounds or nausea you may have migraine. Talk with your doctor to get diagnosed and treated. Migraine specific medications (such as triptans) are only available in the US through a prescription, so work with your doctor to create the best treatment plan for you.
Jacqueline L: I was Dx with Raynaud syndrome about the same time my migraines started 40 years ago. Does one cause the other?
Dr. Pavlovic: We do not know the causal relationship of Raynaud’s and migraine, that is we do not know if one causes the other. We DO now that they travel together and will often co-exist, particularly in women. The one important aspect of having Raynaud’s while having migraine is that you should avoid vasoconstrictive medications such as triptans and ergots (DHE).
Dr. Buse: Living with migraine or another chronic pain condition can be frustrating and lead to feelings of guilt, anxiety, anger, hopelessness or helplessness. If you feel that stress, anxiety or depression have become overwhelming please reach out for help. The American Psychological Association provides referrals and information about mental health wellness, stress management and living with a chronic illness. For links to this and other organizations see http://dawnbuse.com/resources.html?t=0.
Dr. Buse: Thank you to Pain Pathways Magazine and everyone who participated in this chat by asking questions or following along. This is a very exciting time of new understandings and treatment options for migraine. The future is looking brighter than ever. If you or someone you love have migraine or think you might have migraine please speak with your doctor or a headache specialist. Information combined with the best treatment plan for you can help you live your best life while managing migraine.
Dr. Pavlovic: Thank you all for the great and informative questions and for willingness to share your personal experiences of living with migraine. Thank you also to the PainPathways Magazine for inviting us to participate and co-host this chat!
PainPathways Magazine: On behalf of the magazine, we’d like to thank our experts and all those who participated in tonight’s chat! We are excited to be offering this great forum for information and inspiration.
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All information provided is for educational purposes only. Neither PainPathways nor their Facebook Chat hosts are responsible for a medical diagnosis. Individuals should seek a physician for evaluation and personalized treatment plan.
Allodynia When Touch Hurts But Shouldn’t , by Dr. Gretchen Tietjen. http://www.achenet.org/resources/allodynia_when_touch_hurts_but_shouldnt/
American Migraine Prevalence and Prevention (AMPP) Study
What is a Headache Specialist? Do I Need One and How Do I Find One? http://www.achenet.org/resources/what_is_a_headache_specialist_do_i_need_one_and_how_do_i_find_one/
Find a headache expert by zip code http://www.achenet.org/resources/healthcare_professional_search/
Infographics Explains Headaches
Stigma of Migraines
PLOS ONE: The Stigma of Migraine — www.plosone.org
American Headache Society Urges Caution in Using Any Surgical Intervention in Migraine Treatment
7 Surprising Things You Don’t Know About Migraines
A Brain Wider Than the Sky–www.goodreads.com
Pain Chronicles by Melanie Thernstrom
Dr. Buse: http://dawnbuse.com/
American Migraine Foundation: www.americanmigrainefoundation.org
American Headache and Migraine Association (AHMA): https://ahma.memberclicks.net/
Headache Journal: http://www.headachejournal.org/view/0/toolboxes.html
National Headache Foundation: http://www.headaches.org/
Dr. Buse: @dawnbuse
Headache Journal @headachejournal
National Headache Foundation @nhf