Changing Migraine Attacks: How Do I Manage My Care?

By Amanda Osowski

2 min read

I've been dealing with migraine for as long as I can remember. In fact, I have some vivid memories of childhood being curled up in the fetal position, laying on the cold bathroom tile floor, waiting for the pain in my head to subside.

For years, I've had no choice but to advocate for my own care - whether that be medication to prevent migraine attacks, migraine treatment, or anything in between, it's been on my shoulders as the patient to bring that information to my provider and ask for help.

How did my experiences change 2 years ago?

About two years ago I switched from a neurologist to a migraine specialist/a center that deals only with headaches, and within two visits, I got my migraine under control. I have been so grateful for the support of the clinic, their accessibility and getting the care I both needed and desired.

How did my recent migraine attack change that?

A few weeks ago, I had surgery. When I came out of anesthesia, I had a brutal migraine that lasted several days. In case you haven't experienced it - its very hard to have a migraine in the hospital. The lights and sounds alone are impossible to stop/block out. Anyway, since this specific migraine lifted, I've had daily headaches - something that has not happened in a long time, and something that I have been left very frustrated by.

They've caused me to miss days of work, to be forced to retreat into a dark and silent room for days at a time, to use my abortive medications more often than ideal, and even to run out of abortive medications.

How have I worked with my healthcare providers?

This is when I reached out to my doctor. I explained that things weren't right, that this wasn't part of my normal pattern or routine. At first, the nurse replied agreeing to refill my abortive medications early. I thought this would take care of the problem, and in a way, it did help. My abortive medications still took the edge off the miserable pain that is a migraine, but they didn't last as long as they should've, or even as long as they used to. My migraines kept coming back.

So, I reached out to my doctors office again to schedule an appointment.

How have I been preparing for my appointment?

As I wait for that date, I have been remembering ways in which advocating for myself is both hard and critical. Here's how I've been preparing for this appointment:

Summary: I've been looking at the notes I've been keeping on this series of migraines so I can provide a summary to the doctor on when it started, how long it's been going on for, how severe it gets, what medications I've tried, and the results of said medications.
Medications: What is my current regimen? How has it been/not been working? What other choices do I have?
Questions: Obviously what I'm doing isn't working fully. What can I do differently or what can I add to my routine to prevent these continual rebound migraines? Also, what are my options for changing my preventative medication because obviously what I am doing isn't working.

I'm really hopeful that meeting with the doctor will give me some new ideas and a way to break this cycle.

I'd love to know - when you prepare for a migraine appointment, what else do you write down/gather to share with or ask your doctor? Did I miss anything?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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CommunityMember85dd77 Member
Migraine specialists are the way to go but I would still caution them. There are some, like other doctors that like to "throw spaghetti at the wall to see what sticks" causing me to fight with the doctor and prove that what they were telling me is not correct. They can be just as frustrating sometimes. That aside, I think your surgery triggered something. Whether it is a reaction to the anesthesia or perhaps something related to the surgery, your body is off and perhaps in a cluster cycle that needs to be addressed. Steroids can be great at breaking those cycles or possibly something stronger to stop the cycle you are in. In the past, I have had some treatments cause my migraines to alter to avoid treatment as well as growing tolerant to certain meds (ie. Imitrex) after only a couple doses. Sadly, there are so many variables to each person and until you have tried them all and pinned down what is causing the problem you cannot truly find peace. Literally everything you see, smell, experience, hear, etc can potentially be a trigger. Iceberg lettuce is a trigger for me and I figured that out by pure happenstance. 
1. Nancy Harris Bonk Moderator
 <inline-mention username="CommunityMember85dd77" user-id="3886867"/> Thank you for sharing your thoughts with us. I agree, a true migraine/headache expert is the way to go. Having said that, they are not all created equal, just like other healthcare providers. Migraine triggers are so individual. Some of us have food triggers, others not so much. How are you doing today? I hope it's a low pain day, Nancy Harris Bonk, Patient Leader/Moderator <a href='http://Migraine.com' target='_blank'>Migraine.com</a> Team Member
2. Rebecca C Moderator
 <inline-mention username="CommunityMember85dd77" user-id="3886867"/> I agree wholeheartedly. Treating migraines can be extraordinarily complex and individualized, and as you've stated, numerous variables can contribute to each person's experience. Detecting triggers and finding effective treatments often involves the process of trial and error. Seemingly mundane aspects of daily life, such as sensory stimuli or environmental factors, can serve as triggers for migraines. This highlights the importance of thorough exploration and awareness in identifying these triggers and executing personalized management strategies. While it may take time and persistence to find the right approach, understanding your unique triggers and working closely with healthcare specialists can help you develop a comprehensive treatment plan that addresses your specific needs and ultimately leads to greater peace and relief from migraine symptoms - until then there will be no respite. Thanks so much for sharing your view - we appreciate it. Warmly - Rebecca (team member)
Cookie93035 Member
It sounds like your notes are thorough. All I can add are additional questions for you that you may want to discuss with your doctors. 1) Do you keep a migraine diary? There are a variety of formats. Digital diaries are available, but since you are keeping copious notes, a book format may be more helpful for you and your medical team (they can photocopy your pages, as necessary, and include them in your chart). A diary that notes more information might be best for you at this time. You would be able to include day of the week, along with date, and time of day. This helps determine if there are patterns. Including information on what you ate (to see if there are any known triggers that you may be missing, or not be aware of). What did you eat? When did you eat? When did migraine start? (Are they happening more in the morning, afternoon, or night? Do they happen regularly if you have eat or drink the something particular?) 2) When I got into migraine "cycles" where no matter what therapy was used, the migraines didn't let up, my doctor would put me on a brief steroid treatment. This seemed to break the cycles for me, so you might want to ask your doctors about that as an option, what do they think, etc. 3) Not knowing what kind of medications you are on, have they prescribed any CGRP inhibitors? Having tried every available therapy, a CGRP inhibitor has worked well for me and has been wonderful, plus, there are different administrations available. Some are in pill form, some are self injected on a regular schedule (I thought I couldn't possibly manage self injections, but my caregiver gives them to me monthly and compared to migraines, they aren't so bad). I take them monthly and we alternate sides of my lower belly each month and keep track in my diary, so we don't have the "which side did we do that on last month" conversation. Tracking them this way works very well and there are no questions about the location, date of injection, etc. There is also an infusion. If you are unfamiliar, this is where you visit the doctor on a regular schedule, they start an IV and you hang out until the full dosage has been administered (an hour, two hours, whatever the protocol outlines and it's a routine that you follow; monthly, quarterly, etc). 4) I use ice packs, wrapped in a towel. They help me tremendously, so if you don't do this, you can discuss it with your doctors. 5) Some doctors advocate supplements. If you don't currently take supplements specific to your migraine treatment plan, you can ask if adding any could be of benefit. If this would be new for you, be patient, it can take a while before any noticable change. These have been beneficial for me, in addition with my prescribed medications, after decades of trying "everything". Obviously, discuss any additions or changes to your treatment plan with your doctors. Some good news, is that several companies (pharma and biotech) have been researching new treatments for migraines for years, so the options are changing frequently. Keep taking notes/ journaling. The more information you can provide your doctors, the better (as I indicated earlier, patterns usually develop over time, so the diary helps them to determine if any changes are necessary and if so, what direction would be best for you). Good luck to you, I personally understand how frustrating it can be to find the right combination of therapies.
1. Nancy Harris Bonk Moderator
 <inline-mention username="Cookie93035" user-id="4190996"/> Thank you so much for sharing you input and tips - they're terrific! Good to hear CGRP's are beneficial for you. I've not tried many of them as I have a number of autoimmune issues that complicate things. They're not for everyone who lives with migraine. On the other hand so many find relief with them. For most of us using a combination of things includes medications, supplements, devices, complementary therapies and lifestyle modifications - I sure do! I hope you're having a low pain day, Nancy Harris Bonk, Patient Leader/Moderator <a href='http://Migraine.com' target='_blank'>Migraine.com</a> Team Member

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