If we haven’t given you enough information enough on us and our CVS’r, you’re about to get more. June is headache and migraine awareness month. We really don’t need more attention brought to ours.. because we are aware of them ALL THE TIME. But helping get info and awareness out to the public, .
Cyclic vomiting Syndrome is a Migraine Variant that is maternally inherited. If mom experiences migraines.. It contributes.
So controlling or attempting to control not only headaches, but migraines as well as abdominal migraines is part of our everyday life. We are aware of them. But most people don’t know there is a difference between a headache and a migraine. But imagine being disabled by a “headache”. You can’t stand up, you vomit and every light and smell bring on fresh waves of pain. For, Chewy, Once that vomiting starts.. it may not stop. That is a horrible way for any one to exist.
That is why you are now going to be inundated with the 30 day challenge from American Headache and Migraine Association or #AHMA. I’m a few days behind.. SO allow me to start catching up.
Day one Favorite Hope Quote:
The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.
(Randy Pausch, “The Last Lecture”)
I know it really isn’t a hope quote.. but for me it is. I am that person that goes through the wall to get to what is on the other side.. Hoping it will or can make a difference. I don’t stop because the wall is there.
Day Two : Who Helps you Hope? The driving force behind my hope. Chewy. I hope that what we do to help him, WILL help him.
His team of Doctors at UCSF. Since I still credit them with saving his life. Day Three: What small thing gives you hope for living with headaches and migraines
Well, this one is hard. Small thing.. Zomig.. The rescue nasal spray.. That has saved us a few times and seems more reliable for us then most for acute onset. That’s the small one I guess. because our “living” is with a bunch of small things.. The extensive variety of meds that we use based on our symptoms.
For Chewy it’s Dihydroergotamine or DHE. It’s the best preventative that we have found that works for him. Keeps him “stable” for a time.
For me.. Botox. We may even be able to stop my other preventative that I hated.. Yes, hated. I never felt that it worked for me.
Those are HUGE for both of us.
Another Tough one.. wow, this could go so many ways.. Smiling Doctor if they still smiled at us :).
The DHE letters when you can tell Chewy is struggling and it’s time for the re-stabilizing. Those letters can be very reassuring.
But then so can IV. Just those two letters. They are both our saving grace, and a demon at the same time. Chewy used to live on IV’s alone. For months at a time. We went every day. It’s bad when even the nurses would cringe if they had to try for a vein more than once.. which was quite frequent. The PICC line didn’t work and required the restick.. EVERYDAY, for months on end.. SO Saving grace?? Unfortunately, yes.
“The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.” – See more at: http://www.ahmablog.com/2015/06/day-5-migraine-and-headache-awareness-month-blog-challenge.html#.VXHc6s9VhBc