What Does a "Cure" Look Like?
As some here may know, I have had migraine headaches for my entire adult life. I have a family history of migraine headaches, plus I have had a rather large number of concussions, first from playing football in my high school days and also from a couple of accidents in adulthood. The latest being in April of 2016 or 2017, from a fall onto pavement right on my face.
My disability and treatment journey
So I eventually ended up on Social Security disability due to both the chronic, near-daily migraines as well as a back that I broke in a car accident, and 35 years of physical labor that combined to make a bad back no longer allowing me to work.
I saw my neurologist yesterday for my pain block shots that I get in my neck and face every 6 weeks to try and help with the pain. The shots themselves are painful, stating it mildly. They then make my eyebrow and neck areas swell up a bit, but they are also numb for over 8 hours.
I have taken most of the anti CGRP drugs, including Aimovig, Ajovy, and Vyepti. None of them seemed to help.
My experience with Qulipta for chronic migraine
So about 3 months ago, my neurologist and his PA put me on the oral drug Qulipta, another anti CGRP that worked slightly differently than the other next generation drugs. I picked up my meds from my doctor yesterday when I was getting my pain blocker shots, or as they are also known, nerve blockers.
I mentioned to my doctor that while I know that there is no miracle for my migraines, this new treatment seems to be making a difference. I still have the really bad migraines, around once every 7 to 10 days. But I also have a day almost every week with a 0 pain level. And sometimes that lasts for a second day. The other days I still have that nagging 3-5 pain level, but as most of us know, I can function with that.
So during my discussion with my neurologist, I told him that after the several years of working with me, he seems to have hit on something that I can live with happily, compared to what I had 3-4 years ago when we first started working together.
We were both pretty happy, of course. And he told me that in his experience, if one of the anti CGRP drugs started to work, like mine has after 3 months of taking it, things tend to get even better with the drug regime.
Finding the right treatment is possible
Again, I know that I am pretty much willing to accept the fact that I will always have migraine headaches, but with the direction that I am going, I consider myself having found what I consider a "cure" for myself.
As any other person who has suffered from chronic migraines likely understands, a cure is not likely going to look like a cure for a bad knee with a simple replacement of the knee, or a cure for poor breathing with a sinus surgery.
Instead it will most probably look like what I seem to be experiencing, that being something that will allow us to look forward to more days where we can function, and dare I say it even enjoy life fully, without worry about both our suffering but also the trouble that we know we cause for our loved ones, even if they are super sympathetic and supportive.
I hope that for a newer migraine patient they don't take this as meaning that the best they can hope for is a treatment that helps but doesn't actually halt their migraine condition completely. Because we all know of at least one migraine patient who finds the treatment for them that actually does stop their migraine problem dead in it's tracks, or at least for the 2-3 times a year can treat the migraine and work perfectly. My own daughter, aged 44 now, gets a migraine 2-3 times a year, and mostly they can stop it with Imitrex, with her ending up in the ER about once a year, where they give her what they call their migraine cocktail, usually including a triptan, Benadryl, and often some sort of pain medication like Toradol.
What does a "cure" look like for you?
So I guess I have to ask the question of everyone, what does a "cure" look like for you? If you will only be content if your migraines go away completely, I don't condemn you. As a fellow migraine sufferer, I support you and pray that you are able to find that which you seek. For those with other goals, I also support and pray for you, and hope that you have a good neurologist with the patience to work with you until you are able to achieve your goals for the path forward. We all are different, have different experiences and different expectations. We must support each other in whatever goals we have, and encourage each other to never stop or give up on finding a treatment that works for you.
I wish everyone who reads this smooth sailing and more good days than bad.
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