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Migraine Patient Journey

Migraine patient Journey: woman driving in pain

Seeing things through a migraine patient 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 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 that medicines worked and then there were times that that changed. This caused me to start the search again and this required perseverance and determination. This is when the migraine sufferer 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

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. 

As 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.

Migraine Journey: Road

At that time I also sought the care of a neurologist as my previous doctor recommended to deal 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. 

migraine journey: holding hands

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 journey: doctor

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 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 all 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 less migraines. 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.

Stay Connected

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 purpose. Thank you for being here.

Source:

Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201;

39 thoughts on “Migraine Patient Journey”

  1. Thank you for sharing your journey, it took me such a long time to get my migraines under control, although mine are caused by another condition making everything more tricky!
    It’s just so helpful though to not feel so alone!

    1. I am sorry for the challenges of this illness, but glad you were finally able to get them under control. There is so much that goes into migraines. Come back migraineroad anytime. You are welcome to join our Facebook group as well. I understand how it is easy to feel alone at times, but know that you are not.

  2. Thank you for sharing your journey and being so candid about all the struggles you faced and how you managed to get through.
    It’s comforting to know that there can be a light at the end of the tunnel and that there are ways to deal with the pain.

  3. What a beautiful and inspiring post! I really resonated with your mention of the importance of gratitude. It can be so easy to see all the hard and take for granted the good and I really liked that you brought it up. Thank you for sharing this honest and inspiring post! What a great and powerful journey you have been on.

  4. Such an inspiring post. People just don’t talk about these sorts of struggles enough and yet so many of us go through them. thank you for sharing this

  5. You are extremely tough! It’s very inspiring to read about your journey. Thank you for sharing your struggles with us so you can give courage to others!

  6. Such an inspiring post, thank you for sharing your story! People just don’t talk about these sorts of struggles enough and yet so many of us go through them. This is very encouraging and gives me (and many others) hope. 🙂

  7. It’s so wonderful hearing about your journey and so motivating to remind us that though our journeys can be long and treacherous at times, as you go you’ll become stronger, more knowledgable, and more resilient!

  8. Your migraine journey is a testament to your strength and resilience. It can be a long and difficult road, but it is worth it for the relief and peace that you deserve. Your willingness to share your story and inspire others not to give up is truly admirable. Remember that you are not alone on this journey and that seeking support from loved ones and medical professionals can make a big difference. Keep fighting and don’t give up hope.

  9. In Germany, the new treatment for migraine is used – it is called Axomera. It might be worth a try. I have good experience with it after whiplash. (This is my independent recommendation).

  10. Thank you for sharing your journey! I personally don’t have migraine, but I have seen a friend of mine struggling before. It’s definitely not good.

  11. Thank you for sharing your story. I may not fully understand how difficult this must be since I have no experience with migraines. Nevertheless, I completely empathize with you. Writing about your predicament opens doors for others in similar situations to give tips and advice that might help lessen your load.

  12. So sorry to hear about your struggles. I think it’s great that you have a good attitude and support from others. I strongly believe we all must be our own health advocates. I have some neurological disorders and it has been a real struggle to get the help I need. Thank you for sharing your story. I think it will serve as an important message to others.

  13. Horrible migraines are unimaginable if you do not get them. I’ve heard many women say that it’s as bad or worse than childbirth, but at least with childbirth, you can expect the pain to end. I’m glad that you had good experiences at the ER. There is one hospital I’ll never go to because the ER wait time and the ER staff are the worst!!!

  14. I love how you went extra personal in this one and really shared your story!!! Thank you for that! People hearing YOUR experience can trust you even more!!! Best of luck in 2023!!!

  15. Thank you for sharing your journey with migraines. Finding the proper treatment is complex, and it can sometimes be frustrating and challenging. However, it is inspiring to read about your determination, perseverance, and willingness to advocate for yourself and seek the care you need. Your story reminds us that we are not alone on this journey and that there is hope for finding relief. I appreciate your honesty and openness in sharing your experience. I wish you all the best on your continued journey toward finding relief and managing your migraines.

  16. So sorry you have to go through these episodes. I have no idea how migraines feel but I have two colleagues battling them. I’m glad you find strength and support from those close to you. Hopefully they’ll becoming less frequent and eventually stop altogether in the nearest future.

  17. Thank you for sharing your journey, it took me such a long time to get my migraines under control, although mine are caused by another condition making everything more tricky!
    It’s just so helpful though to not feel so alone!

  18. It is really heartwarming to share your personal journey with your reader’s and anyone battling with migraines and has read this will surely feel they are not alone in their journey.
    Thank you for this article.

  19. Thanks for sharing such an inspirational journey. It can’t be easy but sounds like you’ve made some great progress. Thankfully I don’t suffer as much as I used to, and just luck that the migraines reduced.

  20. Thank you for sharing! One of my best friends suffers from chronic migraines. It is difficult to put myself in her shoes but I hope I can support them in being there for them

  21. Thank you so much for a heartfelt and timely article. Having migraines can be very stressful and impactful on your daily life. Your suggestions and validation make a big difference.

    1. Thank you for sharing your personal experiences! I’m sure it’s helpful for people who are struggling with similar problems!

      1. You are a strong, resilient woman, Lindsey. Your journey is inspiring and shows goes to show how much one has to endure. Sending lots of strength, power and health for you. Stay blessed.

  22. I have followed you for a bit now, I really find enjoyment in your writing. I have extremely debilitating chronic migraines so it’s nice to read up on experiences and takeaway tips. Sorry to hear about what happened with the stress that caused some triggers it sounds like. My journey ironically enough wasn’t the path to the “right” medication, I found that pretty quickly, but what happened was insurance didn’t want to pay for it, so what I am “allotted” in a 90-day window either works out okay when things are good, but I’m having spikes of frequency (which happen for a lot of triggers); I find myself out of medication or trying to coordinate with my doctor for supplemental medication. Which sucks, because the supplemental potentially has a bad interaction with the regular medication. All fun stuff.

  23. I used to get horrible migraines. I was getting injections for them for a while. I’m so glad that mine are under control not, but I feel for you. Going through a bad marriage with medical issues is incredibly difficult. I’ll follow your blog and I hope you find you find relief.

  24. Thank you for sharing your migraine patient journey. I completely empathize with you. I have never struggled with migraines, but I struggle with chronic TMJ pain. It’s not easy.

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