When I first became unwell and started to experience dizziness, feeling off-balance and fatigue, it didn't occur to me that I could be suffering from migraine. As with a lot of people, I assumed that migraine was a really bad headache. So when I was diagnosed with vestibular migraine I had never heard of the condition and had no idea how to treat it. I naively thought that some medication, for a short period of time, would 'cure' the problem.
Well, as many who suffer with migraine will probably agree, it is usually best to approach migraine with medication and physiotherapy (if your doctor feels this is appropriate), as well as supplements, and lifestyle changes to exercise, diet, sleep and more. I also found it really useful to read a few books on migraine to get extra tips. It is this multimodal approach that Marina from Migraine Strong, an organisation that advocates for wellness with migraine, also supports and promotes. I am very happy to have done this interview with Marina on her journey with chronic migraine, and the lifestyle changes that she has adopted to help reduce her attacks. Thank you so much to Marina for taking the time to do this interview - I know you will find her story inspiring!
What is your name, and where do you live?
I’m Marina and I Iive near Boston, Massachusetts, USA.
Can you tell me a little bit about your journey with migraine? What was your path to diagnosis? Did it take you a long time to find the right medical team?
I was diagnosed with migraine when I was 13. Back then I was taking Excedrin Migraine to successfully abort my attacks. After trialing rounds of preventive medications which proved to be ineffective and a few years of Botox injections which did provide some relief, I went off to Syracuse University with Excedrin Migraine in my pocket as my sole method of migraine treatment. Through college, law school, and my career as a Lawyer, I learned to live with migraine.
Fast forward to 2014 when I became pregnant and the hormone fluctuations significantly changed my migraine pattern. My attacks gradually became more severe in both frequency and severity. I was not prepared to handle this since my only method of fighting pain was over the counter pain medication.
At that time I did not have an established headache specialist or plan for combatting migraine during pregnancy. My OBGYN approved the use of Fioricet after she saw me writhing in pain in her office. However, eventually, Fioricet lost its effectiveness which often happens because it is one of the top drugs to cause rebound headaches. I was also prescribed Tylenol with Codeine and was allowed to take Excedrin without Aspirin. It was not long before I was stuck in a horrific medication overuse cycle and experiencing daily pain.
When my younger daughter was 6 months old I joined the Migraine Strong FB group. That is when I learned to escape the rebound headache cycle, began the migraine elimination diet, and embarked on my journey of taking control of migraine. I finally found my medical team which consists of my headache specialist who oversees my overall migraine care, a chiropractor who works in my headache specialist’s office and a neurologist who administers my nerve blocks.
Is there anything you would have done differently in relation to your medical care from the outset?
I wish I would have found Migraine Strong sooner and learned about the “Treatment Pie,” the rebound headaches, and the effective non pharmaceutical ways to treat migraine. In that case I would have tried to get my migraine disease under control before becoming pregnant. Since then, I learned that there are some preventive medications that can be taken during pregnancies and that nerve blocks with steroids are also an effective alternative for pregnant women.
The management of migraine often takes a combination of approaches, as the Migraine Strong treatment pie sets out. Are there any approaches that are particularly effective for you?
Yes! We at Migraine Strong love the “Treatment Pie” and believe that throwing everything at migraine is the best way to bring it under control. The slices of our treatment pie include: medications, hydration, mindfulness, meditation, therapy, sleep, diet, exercise, supplements. We have found that these slices combined together give the best chance for our brains to recover and get a leg up on migraine.
I follow a migraine diet (I initially started with the Heal Your Headache diet, however, later did the MRT testing which identified my personal food sensitivities.) I take preventive medications (Topamax and Amitriptyline), as well as Botox and treat with abortive medications no more than 10 days a month.
I receive nerve blocks on an as per needed basis. I recently started a trial of Aimovig. I take supplements (Magnesium and Ginger work great for me). I receive chiropractic treatment which helps my chronic neck pain and migraine. I also meditate every night. None of these treatments worked on their own to prevent my attacks however, combined, their effectiveness increases dramatically.
What are the biggest challenges that you have come across to manage your migraines?
Parenthood! My biggest triggers are hormone fluctuations and stress. The hormone fluctuations plagued me during pregnancy and continue to wreak havoc on my body twice a month like clockwork: during ovulation and menstruation. It is still one piece of my migraine puzzle that I am trying to sort out.
Once I became a parent, stress became a prominent part of my life, right next to the joy and happiness my children bring me. It takes a lot of patience to remain calm during the tantrums, the potty training, morning drop offs at pre-school. The older the little bugs are getting, the stress just keeps on growing. I rely on my meditation routine, mindfulness, gratitude, and breathing techniques to keep myself calm to minimize my attacks and enjoy the time with my kids.
There are a lot of negative aspects to having a chronic condition. But are there any positive changes or experiences you have made to your life as a consequence of suffering with migraines?
I’m glad you asked this question as I believe it is something every person with migraine or chronic illness should take a minute to think about. I have always considered myself a negative person so when my migraine disease became chronic, it was not surprising that my mental state took a hit.
What Migraine Strong gave me was a shift in my attitude. It taught me to try to uncover positives in difficult situations. This change did not happen overnight and I am still learning, but this experience has turned me into a much more positive person despite and in spite of migraine.
One of the best things migraine has gifted me is amazing friendship and support from the wonderful Migraine Strong admin team. I absolutely adore these women and consider them some of my best friends. We chat every day about all the things and some of us have met in person last summer in New York. All of us need a support network to fight migraine and I found mine together with lifelong new friends.
How did you get involved with Migraine Strong? Where did the idea for Migraine Strong come from? How does it differ from other migraine support groups?
Our fellow admin, Eileen Zollinger, created Migraine Strong in 2016. Eileen had been chronic and intractable for 18 years and suffered a migrainous stroke before she found the benefits of an elimination diet and the “Treatment Pie.” Realizing that other migraine groups didn’t offer this information, she created a group and gathered like minded people to help her grow her vision of educating others about migraine. Our closed Facebook group has grown exponentially in the last several years and now has 8,000 members. We also expanded to Instagram, Twitter and Pinterest and launched our blog this year.
Meanwhile, in November-December, 2016, I was experiencing daily migraine attacks and daily vomiting. In December, the pain became constant. My daughter was only 6 months, while my son was 2 years old at that time. I felt anxious, depressed, and hopeless, being certain that my fate was to spend the rest of my days on my couch.
I was looking for pain support groups in my area when I stumbled upon social media support groups! The first few groups I joined made me cry. I read posts from people like me experiencing the same pain cycle I was trapped in. I also read some threads where people were talking about suicide and that really scared me. Although it was nice to find people who could relate to what I was going through, I was looking for a glimmer of hope and definitive action plan to get better. I left those groups but could not stop thinking that this whole new world I did not know about existed.
By some miracle I found Migraine Strong. Immediately I could tell that it was a different type of group. I instantly fell in love with its vibe, positivity and mission. One of the ways we are different is that the admins of Migraine Strong are heavily involved in the group and interact with most threads just like any other member.
Furthermore, we consider Migraine Strong a wellness group. It is a community of people with migraine who are seeking more than just a support group. It’s a place where we help our members examine their lifestyle and treatment plan and determine what changes we can make to improve their migraine condition. Migraine Strong empowers its members through education so they can advocate for themselves. When I first joined this group, I truly thought it was a magical place. And now I’m honored to be one of the people to make the magic happen.
Have you noticed any major differences in migraine treatments across countries?
Yes! One of the major differences I noticed is that in the U.S. many headache specialists believe in the multimodal approach when it comes to migraine. For example, when a patient is not getting the best results with a preventive medication, many headache specialists will add another preventive at a low dose. If that is not enough, Botox could also be added to the existing treatment.
We noticed that members in some other countries must trial each preventive medication separately, meaning they would have to wean off one preventive before starting another. For some patients this makes a difference between living with daily pain and having controlled symptoms. For many patients, being on one preventive is simply not enough. For some patients, Botox alone without a preventive(s) may also not be sufficient.
What do you hope for the future of your own management of migraines, and for the future of Migraine Strong?
Migraine Strong recently launched a website to reach readers outside of our closed Facebook group. Our plan is to continue to educate people and give them hope that taking control of migraine is possible.
As for me, I will always be learning and trying new treatment options. I am passionate about spreading migraine awareness and my hope for the future is that my story inspires others to take control of migraine and thrive, not just survive.
Thank you so much to Marina for sharing her story with migraine. If you suffer with migraine, then you may be interested to join the Migraine Strong facebook group.
As Marina describes, there are some helpful supplements that can help treat migraine, and I've added US and UK links below to these, alongside some helpful books and products you may find useful.