I have been encouraged to look back at my chronic migraine journey and to share my experiences to hopefully help others that are on a similar path. This is a rather painful exercise. Not because of where I am now, or even where I have traveled. I think I look back on the 18 years of chronic and mostly intractable migraine and think how different my life might have been without it.
Migraine As A Thief
When I went back to school, would I have been able to finish becoming a Physician Assistant, as planned? How much more involved could I have been with my kids’ activities? And don’t even get me started on being a better partner to my husband… These are all things that I feel chronic migraine has taken from me. Or at least has bartered in exchange for a quiet, darkened room with shades drawn and ice packs and heating pads as lonely comforts on too many days and nights in my past.
Even though I feel that chronic migraine is a thief and a marauder of dreams, it has also gifted me with quite a few things. I started the Migraine Strong Facebook group to be able to share ideas about how to conquer migraine. I never thought that I would become a patient advocate, but here I am. And the Migraine Strong community has become such an amazing place of positive support, encouraged strength and hope. I have also gained some amazing friends that I have found through this disease, including my fellow Migraine Strong bloggers and others in the migraine community. The confidence that we have to tackle this disease is stronger than ever because we know that we have each other and the Migraine Strong community to back us.
The Early Signs
I met my almost constant companion, chronic migraine, when I was about 2 years old. I just didn’t know it then. She arrived in the form of car sickness on a trip to Florida. My poor mother bore the brunt of that attack and subsequent others. Moms are the best!
Looking back, I can see all the signs. The carsickness when I was little….who am I kidding? I’ve been car sick my whole life! I never could ride on a roller coaster, ferris wheel or spinning ride without feeling nauseous.
Even in high school I had lots of headaches. But because I had about everything that could go wrong with my teeth and jaws, we assumed it had to do with those problems. A couple of ibuprofen and I was usually much better. In my junior year of high school I had jaw surgery and we thought that would solve the headaches, but it didn’t. It wasn’t until much later and during a conversation with my headache specialist that he said these headaches were probably migraine all along.
The Diagnosis
In 1997, after finally leaving an agonizingly stressful job I had my first inkling that something wasn’t right. I had a terrible headache that wouldn’t go away. I went to my general practitioner and he treated me for a sinus infection. And kept treating me for this same ‘sinus infection’ for 6 months.
Finally, my oldest sister drove me to his office for an emergency appointment where we turned out all of the lights in the exam room. He came in to find me lying on his table in a fetal position with my eyes covered. This was the first time that he thought it could be migraine. He gave me a sample of Imitrex, a migraine specific acute medication. He told me to break the 50mg tablet in half and take it. If it worked and I felt better, I could take the other half. I took it at my parents house and I remember almost crying when my head felt better. It was my first time without pain in 6 months.
The Referral To My First Neurologist
My general practitioner determined pretty quickly that he couldn’t help me with my migraine, so he referred me to a local neurologist. I made an appointment and had to wait about 6 months to get in to see him. By the time I arrived for my scheduled appointment, I was pregnant with my first child. The neurologist confirmed my chronic migraine diagnosis, but told me that there was nothing he could do for me while I was pregnant. He said one third of all women get better during pregnancy, one third stay the same and one third get worse. He told me to come back after I was done nursing if I had more issues with migraine. Luckily for me, I was in the one third that got better and I had no attacks while I was pregnant and exclusively nursing.
Unfortunately, as soon as I introduced food to my daughter, BAM! The attacks came back. So back to the neurologist I went. This was during the time of ‘pump and dump’ when you took an Imitrex. We would have to pump the breast milk following the administration of the medication and then dump it down the drain. It was brutal to throw away breast milk if you had to take medication for an attack. Taking care of a baby and having daily migraine attacks was awful.
The Medication Trials
We started trialing preventive medications in an effort to limit my attacks. The thing I remember the most about this first appointment was the handout I was given. It was all about diet and migraine. I was told that this was a migraine diet, but it was hard to follow and realistically wasn’t going to help. So you know what I did with that paper when I got home? Yep. I threw it away. Who wouldn’t with that kind of recommendation. This is actually pretty important later on in my story.
The medication trials were unsuccessful. All of them. I was what they called an outlier. Someone that didn’t respond to traditional medications and treatment plans. Even the Imitrex seemed to help some days but would only last for about 24 hours before the attack would come roaring back. Other triptans were completely ineffective as well as the ergotamine medications.
The Great Imitrex Debate
I took Imitrex only when I had to be functional for something important…you can imagine how this rock, paper, scissors game played out each week. Family dinner, client dinner, date night, preschool engagement, homework or studying for a final, trip to the zoo, swim lessons, playing in the sandbox in the backyard…how do you choose which is the most important? What is considered ‘present enough’? When your body is present but your mind might not be. Those two Imitrex a week had to only be taken for the most important days. Guilt for missing out and disappointing family and friends was a constant reminder of how ever-present chronic migraine had become.
Even those who had a front row seat for this time of my life didn’t have a good understanding of the daily battle. I was really good at faking being ‘well enough’. Waking up with daily migraine and taking care of two young children was incredibly difficult. I did my best to make each day interesting for them, even if I was on the couch with an ice pack. Distraction was key for me to be able to manage the pain for short periods of time. There were many days that I managed just long enough until my husband made it home, and then it was off to my darkened bedroom. My sister-in-law has kids who are similar ages and would rescue me on truly non functional days by taking my kids for playdates. My gratitude knew no bounds.
The Headache Clinic Referral
My neurologist referred me to a major hospital with a specialized program for chronic migraine. I spent the better part of a half day answering their intake questions and meeting with various doctors and nurses. The most annoying part was the question ‘What would you take to treat your migraine in this circumstance?’ Instead of asking how many times I actually took medication over the course of a month (to see if I was in rebound) they asked a bunch of those types of leading questions. It was frustrating because I almost never took meds because they didn’t work.
At the end of the intake questions, they had determined I was overusing medications. Um, no. I was so frustrated by their lack of understanding that I told them if they couldn’t ask the right questions to get to the right conclusions, how could they possibly offer me the correct treatment? I really liked the psychiatrist in the program. He was the best, but unfortunately, I couldn’t see him without being part of what I saw as a flawed program. The first part of the program was five days of infusion therapy to get me ‘off of my meds’ and out of rebound. Aaaarrrghhh! (Read our blog to learn about rebound.)
The Headache Specialist
So back to my neurologist I went. He agreed that I wasn’t in rebound and we continued on our plan…which wasn’t really working. After ending up in his office, crying (my husband had to drive me there) he referred me for another five days of infusion therapy in an attempt to break my intractable cycle and prescribed another new medication. The pain management doctor, also a headache specialist came to see me the next morning in the clinic…he was holding my chart.
He said, ‘I see here that you are concerned about weight gain? Let’s not try this new medication, we will put you on something else. This one will have you gaining weight no matter what diet you follow. We’ll try Topamax and see how you do on that.’
In all honesty, as much as I really liked my first neurologist, this was the first time I felt like my concerns had been listened to and validated. I could have hugged him. He checked on me several times each day while I was in the clinic. At the end of the five days, he was my new doctor. I’m not sure how that all worked behind the scenes at their office, but it has worked out amazingly well for me over the years. Read this blog if you don’t have access to a headache specialist.
More Trialing of Medications
It wasn’t just a snap of the fingers and things were amazing from then on. Unfortunately, Topamax wasn’t a fix for me. Nor were the several other meds we tried, Botox, Cefaly or nerve blocks. I just didn’t respond to preventive meds. But he didn’t give up on me and we worked out a system to know when to treat for the attacks and when to ride them out. I gave up Imitrex and switched to just rescue meds. We added Toradol and Phenergan injections at home, for occasional use, when I needed to abort an attack that was out of control. I learned to love ice packs and heating pads.
The Migrainous Stroke
Unfortunately, in the summer of 2014, I had a migrainous stroke. One day I found myself unable to understand what people were saying to me unless I was looking right at them. This lasted for quite some time, it seemed like hours. Today I would know that this was not ‘just a migraine symptom’, not a strange type of aura. A local CNP tried to diagnose the symptoms as depression and put me on an antidepressant. I had a follow up with my headache specialist. He knew it was a stroke and ordered a MRI which confirmed it. After a complete work up, I was cleared of any stroke risks beside migraine with aura. We determined I really just needed to get the attacks under control…but how?
Encouragement Is Priceless
February of 2015 came around and I approached my headache specialist about using the book Heal Your Headache (HYH) by Dr. David Buchholz and going back on Topamax. He was all for it. During this appointment we realized that when I had tried Topamax before with an ‘elimination diet’ I had really just done an avoidance diet. Avoiding potential triggers instead of eliminating all commonly known triggers. He encouraged me to go ‘all in’ on the elimination diet.
I will forever be grateful for his encouragement at that time. I had never felt hopelessness in my life before this time and without his support of this alternative approach, I’m not sure I would have been able to implement my plan. If he had said ‘diet doesn’t work’ like his colleague from years before, I probably wouldn’t have made the effort. In my case, diet was one of the keys to helping my brain calm down enough for the medication to finally be able to start working.
Change Is Hard
I won’t lie to you and say that making the changes I made while having significant pain and chronic migraine symptoms every day was easy. It wasn’t. It had just become necessary for me to avoid more potential migrainous strokes and to try to improve the quality of my life. I went ‘all in’ on the elimination diet using the HYH protocols. My husband supported me 100% and our daughter and son cheered me on with the hopes that their mom would have less pain they had never known me without. They encouraged me and everyone was willing to adjust to the slightly different meal plans. Even my parents, siblings and in-laws supported the dietary changes and adjusted recipes to help me. I seriously felt the love!! If you need help with meal plans, check out The Dizzy Cook website which has great recipes for the HYH diet.
Walking on the treadmill every day became part of the plan as well. I felt ridiculous walking at two miles per hour and occasionally having to stop to deal with nausea, but that was what I could handle when I started. I seriously felt like I was walking backwards because I was moving so slowly. Adequate hydration became something I tracked and I was ridiculously dedicated to my sleep schedule. I also added all of the recommended migraine supplements at the same time. Eventually, I added meditation with the Calm app and it was surprisingly one of the strongest pieces of my personal Treatment Pie when it came to calming an oncoming attack. It was my goal to hit migraine with everything that I could in an effort to kick it into submission.
Success!!
When I had my first big break of extended time without pain, I was excited and energized. Then distraught when the first attack hit when I was still doing everything ‘right’. My husband talked me off of the proverbial ledge and reminded me of my commitment to trying this for four months. A scientist at heart, I couldn’t just throw away my experiment before it was done. So I doubled down and recommitted. Everyone needs a cheerleader in their corner. My husband had seen chronic migraine kick my ass for a couple of decades. I think he liked seeing me return the favor.
I settled into a pretty good pattern of 2-4 attacks per month. A significant improvement over daily attacks. Breaking a chronic and mostly intractable cycle lasting 18 years is a big deal!! This plan was working! Eventually, I started Migraine Strong and gradually asked my wonderfully dedicated, knowledgeable and incredibly giving partners to help me admin the closed Facebook group. Without them, the group would never have reached as many people as it has today. Nor would we have an Instagram, Pinterest or Twitter presence or this website where we publish our blogs in an effort to educate and reach even more people with migraine.
What Migraine Has Given Me
It’s hard to imagine a neurological disease being the bearer of gifts. But it might be all in how you look at it. Eighteen years of chronic and mostly intractable migraine taught me that having a bad memory wasn’t always a bad thing. Being able to set aside, each day, the brutal head pain, nausea, vomiting, light sensitivity so severe that the sun seems LOUD, sound sensitivity where everyday noises resemble explosions, scents that paralyze face, hands and feet and cause speaking problems…this is actually a gift in a way. I rarely focused on why I had chronic migraine. I knew I would eventually learn something that would be greater than my suffering. And I did.
Rebranding Migraine
It took climbing my own way out of the chronic migraine abyss before I could see that I was supposed to advocate for others. To rebrand migraine so that others could understand that it is more than ‘just a bad headache’. I’ve had so many people describe migraine as an incredibly bad headache. The worst one of your life. But migraine is a debilitating neurological disease that has no cure. While head pain is a part of my usual migraine attack, the other symptoms listed above are NOT part of any regular headache.
Besides the symptoms of attacks, daily chronic migraine symptoms can be challenging as well. Allodynia, the experience of pain from non painful stimulation of the skin, like brushing your hair or touching your face, can happen with chronic migraine. And it can last for months. Constant tinnitus or ringing in the ears, ear clogging, dizziness and unsteadiness. A feeling of dropping, like when you are just falling asleep in a chair. And the always hard to explain Alice in Wonderland Syndrome which alters your perception of yourself and the world. Brain fog is probably one of the most commonly complained of symptoms…feeling like you are thinking through mud. These symptoms are why I considered chronic migraine a constant companion. It is vitally important that the general public understand just how brutal migraine symptoms can be both during an attack and daily for people who are chronic (more than 15 attack days per month).
What Still Needs To Change
The sad and frustrating things that happened to me on my journey, I still see happening to others that come to Migraine Strong for guidance and support. The misdiagnosis from an undereducated general practitioner (to be fair, they can’t know everything!) The lack of willingness to look at diet and lifestyle as options for impacting migraine symptoms. Stigma from doctors that migraine patients are complainers and weak. An unwillingness to try ‘outside the box’ therapies because the referenced study size was too small. Not being willing to treat the patient as a partner in their care. These things sometimes frustrate the educated patient more than actually having migraine attacks. So how do we work around these problems?
Through our social media channels and closed Facebook group, as well as our blogs, we provide opportunities to learn about migraine. Being educated in migraine is half the battle. Doctors appreciate an educated patient. Take your information about migraine to them and work with them about any concerns you or they might have. If they aren’t willing to work with you, reach out to others with migraine in your area and find another doctor who does partner with patients. Twitter is a great place to get in touch with headache specialists from all over the world. They tweet frequently about studies they are reading or participating in. Working together to build relationships in the migraine community, we can continue to educate patients and healthcare providers about migraine. This will ensure quicker and proper diagnoses and better care for all.
Where am I now?
I still have migraine. This neurological disease for me, is now episodic and fairly well controlled instead of chronic and intractable. My symptoms are no longer daily, even though I do think about how to avoid attacks on a daily basis. I still see my same fantastic headache specialist and we have a good mix of preventive medications that we review and adjust as necessary. I don’t follow an elimination diet anymore, having figured out my few dietary triggers, but I do follow a low carbohydrate diet that sometimes leans towards a Ketogenic diet to help manage migraine. And I still implement the Migraine Strong Treatment Pie as part of my migraine management. I recently went 72 days without an attack! A new personal record!!
If you haven’t already, join us in our closed Facebook group. Let us know how we can help!!
I relate to this article in so many ways…honestly, with the exception of the migraine stroke, I feel like this article could be about my life.
Hi April. I think there are too many that identify with us. Ideally, I want everyone to get the same results that I have achieved and to find the help they need. Hopefully, working together, we can crush migraine. -Eileen <3
Oh my goodness. Thank you so much for sharing your story and having the gumption to start Migraine Strong. I know it as saved me much pain and suffering physically as well as emotionally. You are a goddess!
Thank you Nancy!! You are so kind! We are so glad to have you in the group! – Eileen <3
I can relate in so many ways. I am on a very strict diet and have little variety. May I ask what food triggers you identified?
Elaine
Hi Elaine. Everyone ends up identifying different triggers. Within the first 4-5 months of starting the elimination diet, I could list about 12 foods that were big triggers for me. As I progressed with my treatment plan, I have found that the 12 triggers I used to have dwindled down to approximately 2 or 3. This is exciting because I feel like this is an indicator of my brain healing from that chronic/intractable state I was in for so long. Even the raw onion that was a HUGE trigger in the beginning (I really couldn’t even smell it some days depending on how full my bucket was) I can now eat in small amounts in fresh salsa! I don’t push that one to eat slices of raw onion on a burger or anything like that, but we have come to a sort of truce. Are you on a migraine elimination diet or a different sort of strict diet? I’m also happy to discuss this with you in our closed Facebook group if you would rather or over email. You can always email me at [email protected]. -Eileen
Hi Eileen–I am so happy you are so well-controlled now. Especially after a stroke! Can you explain the difference between a “common trigger avoidance diet” and “going all in on eliimination diet? This is a big question. I have basically followed HYH but that diet allows some packaged prepared foods like bread, crackers, cereal and then later talks about barley malt as another name for MSG. What I have done on the packaged foods is check the ingredients and look for as clean a list as possible, However, I still eat ice cream (stabilizers), mozzarella cheese sticks (since the cheese is not aged), and club or graham crackers (malted barley). I am nowhere close to being in control! Were these the sort of changes you made in an elimination diet? Did you kick out wheat in favor of rise? Also Dr Buckholz talks about 2 triptans a month but allows NSAIDs and tylenol to get thru the rough spots. I have not been in medication overuse since the first few months after I was informed I had “chronic” or “transformed” migraine in December 2015. I will email this question to yo but it is too messy for the facebook page. I also still stay away from most triggers ID’ed by MRT a few years ago.
Hi Maureen! I got your email and will answer in more detail there. A couple of things to clarify here for others that might read your comment. In the HYH book which was written in 2003, Dr. Buchholz talks about NSAIDs not causing rebound like triptans. With newer research, this has been disproven. The general rule of thumb is that triptan and ergotamine medications can be used 10 times or less a month OR NSAIDs can be used up to 15 times a month. And you can’t add them up to use them 25 times. If you plan to treat approximately 2 times per week for migraine attacks, you will be able to stay out of rebound. If you are only using NSAIDs, you have a little more leeway.
As far as the difference between ‘common trigger avoidance’ and ‘all in’…MSG is a good example. I was originally avoiding MSG as written on packaged foods. When I realized that the HYH book details out other potential sources of MSG (like Hydrolyzed protein, yeast extract, autolyzed yeast, soy protein etc.) that’s when I eliminated all of them and went ‘all in’ on the diet. Just avoiding MSG was ok, but I was still consuming lots of potential MSG when I ignored the others listed in the book. When I went ‘all in’ on the diet, it meant eliminating all of the triggers and that’s when I saw the greatest benefit. -eileen <3
Thank you for that clarification. I was aware that medication use guidelines have changed in the last 15 years but from some posts I see, I notice people trying to stop using triptans entirely. Perhaps that is where they are ready battling MOH. I think I will need to give up ice cream, except Haagen-Dasz in order to be in compliance. And I do not think there are any breads w/o malted barley. Perhaps I will place this question to the Facebook Group. Congratulations again to you and thanks for the help!
The best breads that I have found are bakery breads and they usually don’t have the malted barley flour. They are fresh, so you have to wait a day before eating, and they don’t last very long. I tend to freeze the loaf and just take out what I need to eat for a day or so. That way it doesn’t go bad while we are trying to make our way through the loaf. It was great to hear from you. Check your inbox for the email!! -eileen <3
Hi Eileen. My twelve year old daughter has had chronic migraines for years with all the symptoms that go along with it, nausea, constant aura of lights, olfactory hallucinations, vertigo, light sensitivity, sound sensitivity, and so much more. It never goes away. We have been to pediatric headache clinics, headache specilists, and neurologists. We have failed several meds, supplements, and many alternative therapies. MRI’s are normal, and her last week long EEG was normal as well. We have the Heal Your Headache book, but diet changes are tough for her since she often feels different and left out due to her migraines and epilepsy. Restricting diet makes that worse. What were the most important changes you made in your headache healing journey? I feel like we have tried everything. At this point, we are basically being told it’s just something she will have to live with forever. Thank you.
Hi Jennifer. I’m sorry about what your daughter is going through. I would say that the most important changes were diet (which helped my hyper responsive brain calm down and let the medications finally get a chance to work), medications, supplements (magnesium, vitamin D and ginger), meditation and exercise. They all had a place in my recovery, but without the diet piece, I don’t think it would have worked. With that being said, my coaching partner Danielle and I don’t love restricted diets for children. Sometimes it’s necessary, but it’s all in how it’s approached. Are you in our closed FB group? Here is the link: https://www.facebook.com/groups/MigraineStrong/. We can likely have a better discussion in there, over Facebook Messenger or you can email me at [email protected]. I’d be happy to have a more in depth discussion about what you’ve tried and what is still left out there. While we often feel like we’ve tried everything, there is so much left to do. One of the doctors at the Migraine World Summit said it would take 25 years to trial every medication out there for migraine if you did it properly. I hope this gives you some hope. If you haven’t read our blog about the Treatment Pie, this is our approach to migraine. It is a multi modal approach and we talk about it a great deal in the Facebook group. – eileen <3
https://www.migrainestrong.com/the-treatment-pie-a-multimodal-approach-to-treating-migraine/
Your story mirrors mine so much. I to have been battling chronic migraines for 15yrs. I was referred to the Headache clinic in Chicago. They did the same with me as they did with you. I came back to my regular doctor that just had me follow the plan of the clinic in Chicago. I was having to take off from work because they became so bad. Of course work did not understand. They became upset with me several times. I finally had a co-worker who understood and was friends with a Neurologist/Headache specialist. He did like your Headache specialist, listened to what I said and worked to find out the best preventative meds. I have been seeing him since 2015 and he started me on the Emgality recently. So far I am down to 2-6 migraines a month. I know it’s progress.
Thanks for telling us your story and letting me know that there are others dealing with what I have been going through and understanding that migraines are not just a headache.
Amy W