Day 25: Who We Are

I feel a little weird today, and I’m not sure why. Yesterday, actually, was fantastic. I finally got the phone call made to the office of my new neurologist, and that appointment is on October 29. I also talked to my childhood friend who is a research nurse at MHNI. We’ve been kind of playing “Facebook tag” regarding my participation in a study up there for one of the new CGRP drugs in development now for migraine prevention, which is SUPER exciting. We finally arranged a time for me to go for an orientation, so it looks like this might really happen. I will have to stop taking my Periactin, Feverfew, Magnesium, and B2 (all considered preventatives). I’ll be driving up to Ann Arbor on September 25; it’s about an hour and a half away. I’ll be paid $50 each time I go. I know the GCRP drug is going to be injected, and at the first visit they will do tests. I am supposed to be using opiates only about once or twice a month and only have failed two drugs for prevention in the past. I was told “failing a drug” means not having side effects but it just not doing anything helpful, so I may actually fall into that category since beta blockers and anti-seizure meds have such dramatic unlivable side effects for me, which is why I can’t take them. I have no idea if I’m allowed to blog about my experiences, and was embarrassed to ask. I’m hoping it will become clear while I’m there. I would be very surprised if I am allowed to, but I’m hoping I can at least refer to it, without discussing results.

Also last night we watched Back To The Future, at Zo’s request. It was so much fun. I was shocked at how much the items from 1985 which made the 50’s confusing for Marty would be equally confusing for one of my kids going back to the 80’s. This makes sense, since it has now been almost 30 years the other direction. We are hoping to watch Back To The Future 2 tonight and laugh at what 2015 was supposed to look like.

X’s friend L came over to play today, and I took a nap. J is at work now and I am trying to keep the girls happy while they juggle watching TV, playing together, and playing on devices. I am enforcing new reading rules for X which just proved amusing to me more than anything. She decided on page 4 she didn’t like The Saddle Club book she had picked out and I made her try to tell me why – it was because she didn’t know how to pronounce “Carole.” And her mom had died. I said, “Bad things happen in books, and can make you really appreciate your own life.”

Here is today’s Migraine365 piece:


Text of Page:
09.14.14 | Day 25: Who We Are | Migraine365 | This is who we are: loving kind full of laughter fun open minded | elizabeth: HELD OFF PAIN: Friday. Surveys. Social media posts. Maintain house. Help Zo. Make food. Rest. Read book. Take dog out. Drive X. Phone calls. Take walk. | X: SCHOOL : Friday. Up. Sister. Yogurt. TV. Get dropped off at school. Do school. Friends. Get picked up. Play. Eat. Sister. Scooters. Dog. | J: WORK HOME ORGANIZED : Friday. Help girls in the morning. Get ready for work. Go to work. Come home. Work on page. Laundry. Clean. Drive. Dishes. Fold. Put away. Work. Drive. Home. Clean. Laundry. Work. Clean. Back To The Future. Dishes. Laundry. Fold. Put away. | Zo: RECOVERY: Friday. Up. Couch. Daddy. Sister. Drive to school. Come home. Play. Feel worse. Feel better. Eat. Tylenol. Watch Horseland. Play. Paint. Pick up sister. Paint. Scooters. Walk Asia. Back To The Future. Doggies. |

3 Comments Add yours

  1. sexyachymoody says:

    Can’t wait to hear how it goes! I haven’t had much luck with any of the migraine medicines I’ve tried either. In my experience, if it works, it has unbearable side effects, like the heart palpitations Amitriptyline caused, or it just won’t work at all like so many of the others. Hope it goes well for you!

    1. ladymigraine says:

      Thank you! It’s funny, tricyclics are the one class that DIDN’T cause unbearable side effects for me. They are the one class I definitely “failed” because they did nothing. However beta and calcium channel blockers lower my blood pressure too much, even though I get fewer headaches. And Topamax and other anti-seizure meds make me horribly depressed. I will definitely be interested in seeing how this goes!

      1. sexyachymoody says:

        I had the same reaction to the beta blockers. Topamax made my vision so blurry, it was scary! Enjoyed the post! 🙂

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