The Migraine Book (of Doom)

Hi all...I'm back. I hope to maintain my resolve to keep this blog going.

Still no word from my cardiac surgeon. Oh well. At this moment in time, I am not sweating it.

I did see a Neuro-opthamalogist this past week, however. He diagnosed me with vasospastic arteries, and put me on Verapamil to control the disorder and hopefully help my persistent aura.

I have also seen my migraine specialist since then, and we are going to try Seroquel again, to give my Zoloft a boost and help the neurotransmitters in my brain to level out. Hopefully, the Verapamil and Seroquel together will calm everything down.

I am still taking my DHE cocktail as well, and have added Migranal in too.

So, there are my updates. However, I want to write about my migraine book. It seems that with migraine being as stubborn of a disorder as it is, it's sometimes necessary for chronic sufferers to put together a binder of important information in case of an emergency. In my case, my constant migraines are a stroke risk, coupled with the vasospastic arteries and the incidence of my PFO. You cannot be too careful when it comes to logging your medications and health issues.

First off, I bought a binder with kittens on it. You can buy whatever kind of binder you want, of course, it doesn't matter. I chose kittens because I love cats, and babies are always a happy thing. You need some cheer in the hospital, right? Next, I filled it with folders. I labeled these folders for migraine articles, personal health info, and consent/information about the ESCAPE PFO trial. Also, I have plastic sleeves that I keep the pharmacy drug handouts in for easy access. My migraine diary is also in this binder too, as well as the TCD dopplar readouts from my PFO testing. Anytime there is new information to add, it goes into the book or is written down in the workbooks. You shouldn't be restricted by anyone's methods, either, unless your doctor has a need to access that information too. So whatever manner of information gathering works for you, get to it! You never know when you'll need that info. As an aside, I have begun decorating my binder with goofy stickers. Now my doctors all know I am a dork, proudly proclaimed on the inside of my binder!

Sometimes the migraine patient can be confused about what she has or hasn't tried yet. These workbooks, provided by Teri Robert at http://www.healthcentral.com/migraine/tools-192843-5_2.html can help you keep track of what's going on. With managing migraines, the last thing you need is to doubt what you've done in the past.

Also, ER forms for your migraine doc and you to fill out are also handy. Found here, http://www.healthcentral.com/migraine/tools-195672-5.html , these forms help the ER staff to treat you more effectively by understanding that you are, indeed, a migraine patient under the care of a neuro or specialiized doctor who may need different medications that are generally given to migraine patients. The migraine complaint is among the first when drug seekers go into the ER looking for pain medication, so these forms can also help you avoid being labeled as a drug seeker.

Last but not least, a medical ID bracelet is a good idea as well, especially if you are taking several medications. In an emergency, if you cannot speak for yourself, the bracelet can, and the ID company's dispatchers have access to your medications list so that responders know what they can and cannot give to you while you are under their care. Your physicians' information is also stored so that they can be reached if there is a question about your health. In my case, I have a PFO occluder device and a cardiac anyeurism, along with a PFO that was not sealed with the occluder, so my cardiologist's number is a primary contact. Of course, we all hope that we'll never have to use the bracelet for any emergency situation. But it's worth paying the money to make sure your family and emergency care doctors don't have to scramble to make guesses about your medications or conditions. Plus, donations to the ID companies go to help other patients with their needs as well. It's a win-win situation for everyone.