weaning off migraine medication: my journey
It's been a while (hello, six months) since I've written a blog post. While I've been absent on the blog, there's been a lot happening in this space for Vestibular Warriors as well as in other areas of my life: cross country happy move from NY to Seattle, embracing our new home, exploring the city, I'm back in school studying holistic nutrition, in the process of finalizing a vestibular warrior project (more on that soon, promise!) and... beginning the weaning of my migraine medication.
Woah, that was a mouthful.
I contemplated sharing the process of coming off migraine medication the same way that I questioned sharing my life with vestibular neuritis/vestibular migraines. I was silent for a [dark] while, then sharing became a light in my life and a beautiful part of my healing. Ultimately, I know that I must share. Creating Bliss Out has always been about bringing to fruition what I so desperately needed in the thick of the vestibular messy middle. It's about holistic health and a hub for us to own our wellness. Even better, a place to create our glowing wellness.
Sharing the ups and downs of my story has meant the world to me because I know there are so many others walking similar trails trying to figure out this vestibular migraine life (or any migraine or vestibular condition, insert yours here). I want to share while I'm in the throes rather than after the fact, especially because there's a possibility that you're going through something similar and we can support one another. Us Vestibular Warriors get each other in a way that no one else does and for that I'm beyond grateful.
So, here I go talking about my next step. I've begun the process of weaning off my migraine-preventive medication.
Why did I start taking migraine medication?
The short answer: I was done with the out-of-the-blue attacks that would sink me deep back into the vestibular migraine symptoms (derealization, dizziness, nausea, anxiety, eyes drifting). That being said, I wanted to heal naturally and I didn't want a medication covering up my symptoms. It was a conflict within me. My worst episode was in the weeks before I started the medication. I was out to lunch on vacation and my world went sideways. I wanted a quick(er) fix.
The long answer: At 1.5 years in in I was tired of the surprise attacks and ready to try something else. Looking back I certainly could have made a different decision, but this felt right at the time. My symptoms had been 24/7 the first year (battling vestibular neuritis, most likely) and around year one I felt like there was something else at play. I had no diagnosis and no doctor had mentioned vestibular migraines to me. I was talking to a fellow vestibular warrior telling her how I felt so much better, but the symptoms were waxing and waning without predictability and I couldn't make sense of it. She told me she understood completely and that she had been diagnosed with vestibular migraines. Light-bulb moment!
By 18ish months in I was at a beautiful 90% better, which is freaking blissful compared to the hell of the first year. I know that percentage is arbitrary to read, but I'll explain. I'd be going along my merry way so close to touching normalcy and BAM. I'd get swarmed with symptoms without warning and it would crush my soul and take days (and often longer) to come out of it. I'd hit my happy 90% again having climbed the mountain out of the darkness and just as I got to the top and enjoyed the view, another episode would hit. It was a vicious cycle that was draining. So draining.
I wanted to heal completely holistically. I wanted it so damn bad, and I still believe in it. At twenty-one months in I had my first appointment with a neurologist who specialized in vestibular migraines. All her education and all she could offer me was medication, but I knew this going into the appointment. I had made up my mind before I walked in her office that day.
I was ready to get behind a medication to break the cycle. That became our plan: break the cycle and get off the medicine. She had said ideally I'd go six months without symptoms and know it was time to start weaning.
What is migraine preventive medication?
I highly recommend that you read Heal Your Headache by David Buchholz, M.D. to gain a better understanding on the medication available, but I'll give you the gist. It's a medication taken daily with the hopes of stopping migraines before they start. There are several different kinds: tricyclic antidepressants, calcium-channel blockers, beta blockers, SSRIs, non-steroidal anti-inflammatory drugs and corticosteroids. I went with the first option because it was the one I was most comfortable with. [Note: I do not share the exact medication/dosage because we are all different when it comes to how our bodies react to medication]
Why do I want to wean off the migraine medication?
In my opinion the medication only helped me go from 90% to 100% (most days) because my holistic game was so strong. As I talk about in my 3-year update video, I have to keep up with my migraine diet (vegan by choice), supplements and holistic wellness routine. The medication is just a piece of the puzzle, but I'll always put out there the reminder that it wasn't the thing that got me to 90%.
It was the hammer that smashed my window.
I want to wean off the medication because I feel like I'm at a place in my life where I'm ready. I've spent the last fifteen months on it and I've only had three more intense attacks, all of which I pulled myself through within the day. That fact has been incredibly empowering. The attacks did not take over my week. They were a pronounced reminder of how much power I have in taking ownership of my wellness and my life.
Want the honest truth, though? I want to prove to myself that I can do this holistically. I deeply believe that we are meant to thrive in this life. Our bodies are meant to heal and we are meant to feel that deep bliss that radiates from the soul.
Also, I don't know the consequences of being on the medication long-term, because while I'm thankful for the balance the medicine has assisted with, what if it's hurting my body in other ways? I think about that stuff.
My action plan:
I'm taking it slow. Slower than you think. I'm not looking to shock my body. My mission is a blissful gradual reduction if that exists.
I've already been stepping up my holistic wellness game with essential oils, plant powered supplements, meditation, Epsom salt baths, walks, and embracing all the happiness in this life. Uncovering my bliss, which is all part of the journey. Here's the breakdown of what my holistic routine looks like if that interests you. It's an area I'm super passionate about and the reason I'm back studying holistic nutrition.
My Wellness Routine // supplements + food
My Essential Oils Daily Routine
What I Do When Symptoms Heighten // Oils Routine
My Vegan Migraine Diet
Keep in mind, I'm not perfect! I don't always follow the diet, I love [vegan] desserts and Four Sigmatic Coffee. I'm human. It's a learning process. I also change up my oils routine as I see fit, but I share a lot of that over on Instagram. I'm vestibular_warrior if you want to connect!
I'm also working with a functional neurologist. I did the Dutch kit and learned a bit more about my body and my hormone/cortisol levels. I've always been interested in exploring this avenue given that everything hit three months postpartum. I'm currently taking natural supplements from him and hoping that further helps me get off the migraine medicine.
How long will it take to get off migraine medication?
Hey Universe, are you listening? I need your guidance on this one...
My point is that I have no idea. I will be listening to my body completely and going with the flow. Six months to a year would be my guess at this point, and probably closer to the year if I'm being realistic. It took me 4 months to get to the dosage I'm at, so I would anticipate doubling that time to come off of it. I'm still waiting to get in with a neurologist to hopefully provide some guidance. Thus far, the internet and talking with other vestibular warriors has been my main supporter, but then again, that's been the case for so much of this vestibular stuff.
I also will be providing updates here throughout the process. That way I'll remember all the little details and we can root for one another as we uncover our bliss.
I worked from home one day recently and had the opportunity to spend the day with my three-year-old and it was so much fun. I rarely get any alone time with him and taking a walk with him on lunch and listening to all he had to say just lit my heart up with so much love. He was a newborn when all the vestibular stuff hit and his life is essentially a timeline for my healing. I starred into his eyes as my world felt like it was crumbling in the early days with the vestibular stuff and look into them now so grateful for where I am, and where I'm going.
Thank you for visiting Bliss Out. If you think someone else could benefit from this post, please share. I want all the good vibes going around.