Seeing things through a migraine patient’s journey brings a sense of understanding and comfort that you are not on this road alone. Sometimes the road seems long, but there is always hope. You are not alone on this journey and here at migraineroad you will find a story of perseverance, challenges with hope, and honesty.
Migraine Patient Journey-Worth the Battle
Finding the right medicines can feel like an uphill battle, but it is not one to quit. You will get there and when you do, relief will be so gratifying and you deserve this peace. Frustration may be your experience and that of those close to you. Remember this is not your fault no matter how long it takes.
At the risk of causing you to fear due to being real, I am going to put my journey out there and instead hope that it inspires you not to give up. Migraines can change over time and for me that was very true. That was a big factor in my medicine search so know that there were times when medicines worked and then there were times that changed. This caused me to start the search again and this required perseverance and determination. This is when the person with migraine learns they are stronger than they think.
This is also a time that having supportive people and good medical care can make a difference. Being an advocate for yourself is very important. I will share more about this and learning this lesson myself took some time.
Migraine Patient Journey-Diagnosis
When I was finally diagnosed at 30, my real journey was only beginning. I had migraines since high school, but they were not frequent yet. Prior to 30, I had the onset of epilepsy with migraines, but it took time to get both conditions diagnosed. There is something to be said for naming what gets you and for having good health. Also, I should note that during that time I had years of much to be thankful for, a story of overcoming trauma that made my health conditions harder to handle, and faith that made living the life I felt called to live worth the fight.
When I turned 30 I had left an abusive marriage where it was determined stress was causing my seizures. I finally moved away while continuing the medicine I was already on. That change was enough to control them and was so important for my health. If you find yourself in a situation that changes your well-being, know that you have the right to a better life. Having the courage to change your path or choose something new is well worth any fear or doubt that may be on your mind. After having frequent seizures, I have only had one seizure in 15 years since I left that relationship. This was due to a missed dose. That speaks volumes.
At that time I also sought the care of a neurologist as my previous doctor recommended dealing with my “headaches”. My new doctor diagnosed me with migraines. I had had so much going on previously that they had taken a backseat. At that time they were not that frequent or severe. I was placed on some rescue meds and for a time they were effective.
Change Over Time-Bumps in the Road
Over the next 5 years as I got a little older I went through some necessary medicine changes as my body reacted to lengthier times on the meds and time brought on changes to my migraines. Research says that your migraines can change over time and let me tell you that was true for me! Now, I am hoping that I am lucky to experience what the Mayo Clinic reports as migraines peaking in the 30’s and potentially decreasing in the later years.
I started the occasional hospital visit during this time when my rescue meds were not enough. I knew it was time to go when I started vomiting and the pain was unbearable even with my medicine. At that point, I could not control them at home.
During this time I was met with understanding at the hospital even though I felt discouraged at times. I thought I had found answers and yet things seemed to be getting worse. I was blessed with support both at home and school. I appreciate the compassion of my neurologist and the ER doctors. You can read more about what to expect at the ER here in Patient Perspective: Migraines and the ER.
Highs and Lows on My Migraine Road
The next 5 years brought some of the biggest changes in my life story. My hormones began to change and I had my two boys. They are my greatest joy. I have written about this in Help Now Please: Can These Migraines Be Hormone Related and Migraine with Pregnancy. You can read more specifics and how these were handled by my doctors in Postpartum Migraines: An Unexpected Story.
With the detours I had taken in life, I had been blessed later in life with children, and with these sweetest blessings came some times of the severest migraines. However, I was also given some of the greatest love and more than I could have imagined. So if you find yourself in a time of pain and feeling hopeless please hang on. It will get better. This road can feel impossible, but with persistence, you will get there. I looked for the good and tried to find gratitude to push me forward. Gratitude can be a powerful thing.
Thank You, but Time For a New Doctor
I have shared 10 years of my journey with you. At the end of my last 10 years, I found myself with my two boys and a body that was plagued by migraines out of control. Short-term disability was even a part of my story and I fought my way back to the life I felt called to live. I couldn’t let migraines steal that from me.
My migraines had come back with a vengeance after pregnancy as my neurologist warned. My neurologist at the time was a compassionate man who I felt loyal to and didn’t want to leave. However, after a week-long hospital stay, I knew I needed to change.
I changed to a team of doctors that put me on preventatives and I started to get better. My new neurologist sat with me and explained the science behind migraines and set out on a mission to pinpoint exactly what would improve my quality of life. I cried with hope and relief. I pray for you friends that you find this. Don’t stop until you do.
Migraine Patient Journey: Are You Serious?
There is still much to come in my journey and the start of this school year reminded me that sometimes that includes surprises. However, where I am today also shows that there is always hope. I will share why I believe both.
This year on the first day of school I held on until I walked my kids to the busses. My hope was to make it through the day. My thinking was I was maintaining and if I could do that, I could take my stronger migraine meds after school and be ok. I was wrong and should have known better. Friends, I have to humbly admit I too can know what is best and so desperately do not want to miss out on life. I didn’t want to let my students down or have them worry about their teacher. You could say that backfired.
My plans came to a screeching halt when I made it to the nurse’s office and had to have help to take my injection due to my rapidly increasing pain. I got no relief at all and continued to feel worse. It was then I knew the ER was my next stop. Too many times of meds not working and hospital visits told me what was coming. However, I did not foresee what was going to unfold.
My school nurse so graciously drove me to the ER and I saw my husband and sweet boys for a couple moments as they met us there. I then sent them on instead of having them wait. After hours in the ER the doctors chose to admit me. This was the fifth time I have been admitted for migraines. I then spent the next five days in the hospital. So much for not missing school.
It’s Going to Be OK
Again, I have to tell you how blessed I am. Family at home and school showed up in a big way. Sadly, I didn’t see my family for that whole week, but they did rally together. My whole family actually got Covid. We thought that they got it at a school event, but I missed that because I was in the hospital. I felt so bad for them but could do nothing.
At school, my teammate continued to be amazing and supported my substitutes. I was blessed to get the same sub which is a miracle in itself. My school family supported my students and I have to say that I work with the best of the best. My whole teaching career I have been blessed. The people in my life make my migraine story one that includes love and gratitude.
Migraine Patient Journey: Don’t Give Up Hope
Even with all the ups and downs and changes in our stories, we must cling to the hope of the good days and what life will bring. After my hospital stay, I met with my doctor again. We knew we needed a different plan. We chose to add in Botox and I will be writing about that after a couple more treatments.
As the school year has progressed, I have once again gotten better and I am so thankful for that. I think it is important to note that migraines currently don’t have a cure. This means migraine attacks continue to happen, but we can do our best to control them. I have had people ask about that and seen frustrations in both people with and without them. This neurological disorder is not kind, but with determination and hope we can keep it from taking over our lives.
You Are Not Alone
The people in my life continue to humble me with their hearts. You need these people in your life. As I have said, these are the voices you have to listen to. My people are the best. My family at home and school and friends are my lifelines. I hope they know how much I appreciate them. Giving them the fullness of that message seems like a challenging task, but one I am willing to continue to strive for.
Some of the kindest people in my life have been my little ones and my fourth graders. My kids are my little doctors and my fourth graders have even checked on me noticing I have had fewer migraine attacks. Kids are inspiring.
Find your people and let them be a support to you as you find the things that work for you in your own migraine journey. I wish you the best and know this is not an easy road. This is a road you don’t have to be on alone and there are many who understand.
While you are on this migraine road come back here for resources and encouragement. Reach out on the contact page and join our Facebook group. Migraines are not something to face alone. Through them, you can learn strength and connection. I have learned to appreciate the good days and that my life has a purpose. Thank you for being here.
Some Helpful Products On This Journey
A complete medication list ensures that you get the best care and nothing gets missed. A place for directions, doses, and contact information is included. This is great for a medicine cabinet, someone helping care for someone else, or for communicating with healthcare providers. You might also check out the migraine attack tracker. You can …
Starting a new habit can be intimidating. Having a plan, taking it one step at a time, and tracking your progress can mean more success! This habit tracker does all that for you. Check out this post on gratitude here. Join the Facebook Community for support and encouragement. Follow this new page to stay in …
It is so helpful to have your medical information handy at all times. This can be especially true if you are in a situation where you are not well and you need someone else to advocate for you. Having important details written down ensures you will get the best care. This card includes a place …
There are many misunderstandings about migraine. Here are a few in this free download. Confirm, clear up questions, and feel free to discuss with others. Awareness creates understanding. Find out more in Migraine 101 Also, find the Facebook community here. Check out product updates and migraine information on our new page here.
This migraine tracker will reveal triggers, symptoms, and what medicines are working. It is a great piece of data for the patient and doctor to discuss. Migraine Tracking is discussed more on migraineroad.com and this migraine tracker is one way to take back some control of your migraine attacks so you can live your best …
Mayo Foundation for Medical Education and Research. (2023, July 7). Migraine. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201