If you’ve been reading my updates, you know about the terrifying headache that progressed from an ocular migraine to a never-ending intractable migraine (which is how doctors identify when it doesn’t respond to any treatments they try). Then you also know how excited I was to finally find a headache specialist affiliated with a teaching hospital who was willing to use Dihydroergotamine (DHE 45) to attack it.
Well, I went in for five days of 8 hour IV infusions of the DHE plus IV Zofran and IV Compazine when necessary, as well as lots of IV fluids. For protection against spiking blood pressure from DHE, the awesome headache doctor gave me a prescription for a medicine called Clonidine tablets. If my BP got over a certain set of numbers, I would take one of them by mouth WITHOUT(!!) stopping the Dihydroergotamine. Should my blood pressure remain high, I would add another Clonidine.
However, I went in with the bottle of Clonidine and at the end of the week, I went home with the full bottle of Clonidine. The doctor’s method of constant DHE infusion (a drip basically) over such a long time period only got my blood pressure to at max 140/90 which no, isn’t good, but that wasn’t worrying.
How DHE 45 IV Infusions Worked
So what happened? Well, again my husband is my rock and my advocate because we checked in on the first day and they were taking me to a cot in an open treatment area just separated by thin sheet-like curtains with no sound privacy, nowhere to really put down my stuff, no space for my husband who was staying with me to set up shop, no tv, and awful lighting which was just an AWESOME idea for someone with a horrible migraine!
Put it this way, I spent ALL FIVE DAYS in a private room with a door, a big reclining chair for me and one for my husband, a TV, two tables, control over the room temperature and lighting (in like four different lighting combinations), unlimited pillows and blankets, and INCREDIBLE nurses!! Please understand none of that happened because of me, who on the first day could barely stand much less get into a defensive argument with people.
The nurse and then her charge nurse because she couldn’t get it in, put in the IV and we decided to cap it off and leave it in for as many days as possible since it was so hard to get in. That lasted three days before it started to hurt and it was getting a little swollen. Which made them not want to put another needle in that spot or that entire ARM. My nurse, her charge nurse, then a supervisor couldn’t get a new one in so they paged the rapid response IV team, which is two people and a supervisor with special equipment and training.
Even they were stumped and after an hour and 20 minutes, finally one stayed in but that put me behind that much time. My doctor was called and the nurses were given permission to increase my DHE dose and speed up the DHE drip but to keep careful watch over my vitals.
My Migraine on Day Three of DHE
On that day three, 4 hours into my treatment I fell asleep and my husband took a walk around the hospital for an hour. He brought me back some snacks and nudged me awake. Here is what I said:
And then they got me packed up and I went home, two and a half days earlier than scheduled! Woo hoo! Not. I still had to do all five days, but they kept the dosage increased. The migraine never came back and I am writing to you with clear vision, a clear mind, happy if not very wiped out. I wanted to post this so anyone else who has a migraine that won’t go away that isn’t responding to treatments who hasn’t had DHE considered for any number of reasons, take all of this as my experience and maybe even take these blog posts in to your doctor. Good luck!!