I had an appointment with my new neurologist last Friday. He’s just a local guy, and the story of why I stopped seeing my renowned headache specialist can be saved for another day, but Dr. M seems to respect me, knows that I am an expert on my illness and understands that I’m not looking for him to cure me. He listens, prescribes the medications already established to work, and helps with what he can.
Dr. M likes new drugs, new products, when they are released. I wondered whether he gets bonuses or “kickbacks” from drug companies for prescribing their newest medications, so I looked up his name in the Dollars For Docs database. He’s gotten some money, I discovered, but less than most other neurologists and all the payments were under $150, some as low as $11. So new drugs, like the new fangled versions of sumatriptan with new delivery methods, are his thing, his way to try to help people who have tried everything, at least help them try to find something that might work a little better than what they’ve got. I’m okay with that. He loves the fact that I’m involved in the study.
The appointment before this one, my first with him other than the many times he was assigned to me during local hospitalizations, I had walked out with a sample of Zecuity, the sumatriptan patch with electronically administered medication, which didn’t come with proper instructions. I did try to get the prescription filled through the specialty pharmacy, but I didn’t try too hard, as I was still on Medicaid and Medicare through my Disability and didn’t expect it to be covered. The sample was wasted when I pushed the button too many times. The next thing I knew, Zecuity was being removed from the market due to reports of burns and scarring.
This time it ended up being Onzetra Xsail, the 22mg sumatriptan nasal powder with administration device. Dr. M asked whether I might want a new injection that is 3 mg instead of 6 mg. I didn’t say so, and I won’t say so here either, but since I don’t use an auto-injector I could hypothetically reduce the dosage of my relatively cheap generic sumatriptan myself by only injecting half the dose with my makeshift plunger. (I don’t recommend doing this because it is against the manufacturer’s advice. The only reason I don’t use an auto-injector is because there wasn’t one available from the manufacturer when I first got the prescription filled.) So I decided to go for the nose powder. The sample came in a big box, and the prescription could be emailed in to my regular pharmacy. It did end up needing a prior authorization, and also needed to be ordered.
A big headache took longer than I expected to come, probably thanks to the CGRP injections. When it did, one week after my appointment, I followed the thorough instructions which did come with this sample, unlike with the Zecuity. The powder has to be administered to both nostrils, and there are two separate nosepieces to use. First you have to insert the nosepeice into the device and then pierce the capsule inside by pressing a button. The next step says to “insert the nosepiece deeply into your nose. Keep the nosepiece in your nose while you rotate the device to place the mouthpiece into your mouth.”
Yes, there is a mouthpiece. You are actually supposed to blow into it to deliver the powder into your nose, and the action of “blowing” directs the powder where it needs to go and keeps it from going where it shouldn’t.
“Blow with your mouth into the device for 2-3 seconds, like you’re blowing up a balloon, to deliver the medication into your nose. (You may hear a rattling sound or feel a vibration.)” Or, you may feel intense pain that completely overtakes the pain of your migraine. I blew out hard, and a sharp, burning sensation seared through my nasal passages, which already felt tender from prodrome and migraine, up behind my left eye and cheek. I dropped the device and clenched my fists. It took a long time to ease up and I couldn’t tell whether my headache had improved or changed. My entire face hurt. And I was going to have to do it on the other side. Without waiting too much longer I pierced the other nosepiece capsule and inserted it into my nose, put my lips around the mouthpiece, and blew.
It was probably a half hour until the pain from the administration of the powder dissipated. I could still feel my headache but it was better. I was relieved that it had helped at all, and managed to sleep for a while. But the pain didn’t fully disappear from the migraine until the next day.
I called Dr. M’s office on Monday and said I was canceling the prior authorization for the Onzetra, and refilled my generic injection instead. I would much rather insert a needle into my skin than have powder blown into my nose. Please, however, do not take my word for it. This medication could very well help someone who can’t use an injection but needs something other than oral tablets. And this is only my experience. But for me, Onzetra Xsail is definitely a no-go.