Headache Diease and Sweet Remission - Now What?
Last updated: July 2023
My journey has been brutal since 2017 adding many new diagnoses and struggling to manage. Balancing chronic cluster headache, SUNCT, trigeminal neuralgia, migraine and vestibular migraine has really been challenging. Each of these diseases needs their own treatments and lifestyle changes. I wasn't managing great leading up to 2017, but that year really set me back. Drum roll please...I'm happy to report I am not only managing better but have achieved some levels of remission. It's scary to put this in writing and I'd like to share my current mixed bag of feelings.
Am I cured?
I'm being very careful to say I am not cured, but I am finding some remission with some of my diagnoses. These are all chronic conditions which I will need to manage the rest of my life. They are life changing, but they are not without hope. I am still on all my preventive protocols and not sure how this will be navigated in the future. As much as I want to throw all my worries and memories of the last 6 years out the window, in reality I know these diseases are here to stay.
My current statuses are: chronic cluster headache is in remission, SUNCT in remission, migraine went from high episodic to 2 attacks in 6 months both of which were quickly extinguished, vestibular migraine symptoms pop up and are managed quickly and trigeminal neuralgia is managed pretty well. Trigeminal neuralgia is the one I still have the most pain with currently and the one I still have to actively treat frequently.
What toll has headache disease taken on my mental health?
Now that I am experiencing some remission, I have an increased hope. I have treatments that are working for now, and that gives me hope that I can continue to navigate bumps in the road. In many ways I put life on pause (as much as life will allow you to). However that kept me stuck. Finally, I am now starting to step back out into life and live again. I have a new perspective. When I started spiraling in 2017, I did try pushing through. I'm glad I did, but at the same time, my perspective was in my way. When I pushed through I didn't soak in any joy of these experiences. I had a lot of bitterness. For now, I'm trying to live today - not worry about if I might have pain tomorrow or worry about that twinge I had yesterday but live in this moment. It takes a lot of practice. Learning my stressors and how to better manage them has been a huge key for me on top of finding treatments that work well.
How can I balance my life with headache disease now?
- I haven't thrown away my preventives or my abortives. I still keep my follow up appointments too! Keeping these appointments is important so that I am able to remain an active patient status so if I need help I can get it.
- Lifestyle changes I continue improving not deleting! I continue to watch my activities and make sure I'm not overdoing it. I also continue to find healthy foods and healthy activities to help me live better.
- Have fun! I booked a trip to the beach which is something I was not sure I'd get to do again. I cannot wait to soak up the sun and the time with my kids and family. I need memories for the tough times!
- I'm working on saying "no" and not overbooking myself. I am finding my passions and pursuing them, but being mindful as well. I need to take care of myself and my kids.
- I continue being a member of the community to support and encourage others. I also keep notes regarding treatments that are helping others so when I need a new tool I have a list.
Finding myself in this new part of the journey is exciting and just a little "nervous making" but I am hopeful. My kids are excited to see the new me emerging.
Have others downplayed your migraine pain?