Challenging the FDA: Stop the Pain

Things haven't been going very well for me. My menstrual migraines continue to be a source of major stress, anxiety, and severe pain, along with my "normal" migraines (not that migraines are normal, but we all know and get used to what our headpain is signatured). I have had no pain free days in a month. Before that, I went through a few days of freedom that had been preceded by more than 6 weeks without a break in pain. Prior to this period by a few weeks, I went through a string of severe migraines for 7 days, ranging from a 7 on the pain scale to 10.

My migraine specialist put me on Dexamethasone to break the cycle of pain; it calmed things down for the time that I was on it, making the migraines easier to get rid of. Unfortunately they were back with a vengeance after the pack was stopped. In case the Verapamil I am now on failed (it has) to address the permanent aura and the migraines, my doc is to recommend me for long-term steroids, long-term narcotics, and pain management. I can't tell you how angering it is to feel like your doctor has given up on you. It broke my heart to hear him say that those things were even options for me, or for any sufferer, for that matter. I realize that in 3 years my migraines haven't responded to treatments, but the fact of the matter is I still believe the majority of my migraines are related to my heart problem. If closed, perhaps the reduction in migraines would help my medications work better for me, if I even needed them at all anymore.

Migraines are such a personal hell that anyone without them would never understand the freedom that comes from never having one ever again. Having a day free of migraine is a tantalizing preview of what life could be like. Life without restrictions, life without medications or endless copays. Life without worrying about what the insurance companies will or won't pay for (remind me sometime to tell you about how I needed acute IV treatment while in Status Migrainous) and how my insurance company refused to pay for any of it). Life without the misunderstanding and mistreatment of others who think you can simply "get over it" with an aspirin. You know what? We are protected by laws in this country and migraine as a disabling condition falls within the parameter of the Americans with Disabilities Act. Isn't that somewhat surprising for a "headache" that we should just "get over"? If you live with migraine, or with someone who has migraine, it shouldn't be. Migraine takes away life when it is allowed to run rampant over the sufferer.

In concluding this post, I would like to address a project that a friend and I have been working on, which is the ultimate goal of tonight's ramblings. I cannot take the credit; she has done the work. I have merely contributed my story in the hopes that someone may benefit from the effort to change the way the FDA regulates PFO closure, and to also gain closure from the poorly executed and failed ESCAPE trial, in which my investigational cardiologist will not return my phone calls or answer any inquiries into the state of my failed device placing. This article is copyright its author, please do not reprint or use without permission of this blog owner or the article author. Feel free to direct any inquiries to this post, or email me.

Continue reading "Two Women to Challenge the FDA": Stop the Pain