OK, as my earlier post said, I was diagnosed with basalir migraines by my lovely NL. I have a feeling that most of what I am experiencing is chiari related, but I am going to give him the benefit of the doubt. Just curious if anyones had the same dx, what their symptoms are and what treatment was made?
Hello,
I posted on one thread already my story of headache and diagnosis. To recap in response to your post I had occipital headaches (from back of the head, feels like intense pressure and gets extremely painful at times) for 13 years and migraines is a new thing with me (only last year). These 2 headaches are very different. When I have occipital headache no migraine or regular pain medication helps, I do not care for sound or light. Migraine is other way around. Sumatriptan stops attack and sound and light do affect me, acetaminophen can help a bit. Pain is on side of the head with moderate migraine and all over with full blown attack. YET, when I explain anatomy of my pain and headaches to neurologists, they do NOT like to connect either of it to Chiari. They just like to be in denial. That's frustrating! When (with occipital headaches) I can physically feel that "traffic jam" in the bottom of my skull that creates pressure and make my head feel like it is going to explode and my fingers go numb (because of pressure of the spine) and then that poking and stabbing pain right where malformation is. Migraine does it? Okay. Let's be logical. Sumatriptan designed to stop migraine attack. It does with me within an hour when it is a real migraine (my new headaches). When it is pain is from back of the head - no effect whatsoever, like I never took a pill. So, if that headache is not symptom of Chiari what would it be?
My point is, you got to go by what you feel and eventually we all are better of with Drs that specialize in Chiari treatment, those that say, "we listen - we know your symptoms are real". I was looking in 2 chiari centers, they are far for me to go because I am in Ca, but more neurologists I see locally the more close they seem.
http://www.mayfieldchiaricenter.com
http://www.wichiaricenter.org
I was sort of discarded today for Chiari symptoms after my response that my occipital headaches were better during pregnancy. -"Oh, than it is a Migraine, my Dr. concluded". Whatever, it is well, documented already that quite a few women with Chiari symptoms reported improving of headaches during pregnancy. In my mind, it is possibly due to hormone relaxin, all body gets a bit looser and CSF will circulate better even with existing obstruction. Or whatever other reason but just because headache got better during pregnancy does not mean it is migraine headache.
I think occipital headache I have is Chiari headache. And Chiari triggers migraines too because brain can take only as much...of all that pressure change and CSF flow "traffic jams"...anything can go wrong. Does regular neurologist (with me as 1st Chiari patient) will be willing to see it this way? Not it my experience.
My migraines that I believe are triggered by Chiari are my real concern right now. This is a debilitating 28 day a month monstrosity hitting hard 6 days a month with all preventive meds taken. Why migraine doesn't respond to preventative treatment? I have response my Dr does not have. Because it has independent trigger, Chiari. NOT CHEESE, OR WINE takes me for a migraine spin like with regular folks. Chiari does.
When somebody in Chiari center tells me "that's not a symptom of Chiari" I will rest my case until then...I know what I feel:)
If you have any updates to your diagnosis since 2012, please do share.