After my last update about feeling discouraged in my migraine journey I have finally found a new source of hope, a new Neurologist! This Neurologist has his own practice separate from the hospitals. I can’t tell you how refreshing it is to be seen by a small practice instead of a hospital. I have seen this new Neurologist a couple of times now and he listens to what I have to say and is open to trying different treatment ideas when others fail.
During my initial consultation I explained to him how frustrated and hopeless I was feeling because of my migraines and headaches. I always cry when I’m explaining how I’m feeling because I just feel so depressed about the situation. I think he could tell how desperate I was for a solution and started coming up with a treatment plan right away.
He prescribed Trokendi XR which is an extended release version of Topamax, an anti-seizure medication. I want to do a full post about my experiences on Trokendi at some point but the short and sweet version is that I spent the next six weeks or so pretty miserable. Trokendi can be a lifesaver for many people with migraines and I was really hoping that it would work for me. Unfortunately, it also has nasty side effects that left me feeling worse than normal.
I went back yesterday afternoon to see my Neurologist to discuss Trokendi and my next steps. After explaining to him just one of the many side effects he immediately decided it was time to wean me off. I was so anxious to visit him yesterday because I so badly wanted to stop taking Trokendi but my old Neurologist would have wanted me to keep trying. This new Neurologist listened to how miserable I was feeling and decided to try something else. I honestly think my old Neurologist scared me away from doctors and now I have this fear of telling them how I feel.
The new plan is to try a beta blocker and a round of steroids to break this headache cycle that I’ve had for almost a year. I also have to wean off of Trokendi too. I’m a little nervous to start the steroids but I’ve read that they can be miracle workers for people suffering from rebound headaches.
I’m feeling hopeful because this new Neurologist is willing to try new things to lead me towards a pain free lifestyle. He listens to what I am saying and how I’m feeling and never rushes through my appointments. If I have questions I can always call his office between appointments and talk to him. It’s been a whirlwind to get here but I think I am at least headed it the right direction now.
The hilarious part is that the other hospital in my area is finally willing to take me as a patient and has graciously booked me an appointment for January. I’m planning on cancelling. I think I need to be done with hospitals for awhile.
What I’ve learned through this whole process is that sometimes you just have to learn to be your own advocate. I’ve been fighting for a pain free quality of life for eight years so far and I will continue to do so for as long as it takes. This journey isn’t easy and it will never be easy. It’s going to be painful, annoying, and depressing but the goal is to one day be able to travel and have a family with Brett. To me, that goal is worth it.
Thanks so much for reading!