What a typical ocular migraine looks like

Let me begin here as we are about to revisit our old nemesis, the migraine. Here’s a tip: if someone you know gets migraines and mentions they have one, NEVER say, “oh, are you STILL getting those?” Because …

✻ you may get a pie in the face
✻ it shows how much you don’t get it

Migraine is an ongoing neurological disorder, it doesn’t go away over night—if ever. It is a hereditary issue where neurological signals get bolluxed, in my case, the occipital lobe, the vision center, has psychedelic trips that resolve in about 30 minutes. Occasionally there are horrid episodes of migraine-vertigo which are NOT based in the inner ear but the vision center; vision begins to whirl so fast that it is impossible to open one’s eyes let alone drive a car without killing someone. There is no way to predict, it just happens.

If you’ve been following the migraine story, you can view how many things I have tried here.

AIMOVIG, which is a self inject, monthly drug was never able to wipe out an episode or get the frequency down to 0 over a month. I would usually average four to eight episodes monthly, but the vertigo horror seemed to have resolved somewhat … until last September.

When you have a physical issue you tend to think magically: “if I do this, maybe it will go away,” I’ve never had two vertigo days in a row so it will never happen.” (well it did!) You think you have some control, you think there are norms, you think … and if one more person tries to cure you (“did you do this, that, or the other thing? —because this helpful individual obviously has a medical degree—in folk medicine, including your mother) you are permitted to scream.

So, let me bring you up to date. AIMOVIG has been kicked to the curb for a similar self-inject, EMGALITY. (co-pay, also, about $150/month). It could take six months to see the effect. I don’t see a difference in a couple of months of use. I have not been able to block an ocular occurrence anymore, with CBD oil: there is no time and it comes on too fast. It’s like the brain needs to discharge a build up of something. I let it do its thing. I have no choice.

I had an appointment with the headache neurologist a couple of weeks ago, he’s head of a department somewhere and does research. He says there are a lot of new drugs coming out. In the meantime, I have just received this: another electronic device called Nerivio. Price: $100 for 10 uses, no insurance coverage as of yet. The device cannot be recharged, it is modulated via an app on a smartphone, it is worn on the arm at the onset of a migraine. (My migraines are mainly visual and/or gut, I have outgrown the severe pain and cluster-headaches that would last for days on end).

The device is made in ISRAEL which is encouraging as they seem to be ahead of us in many neurological treatments. I haven’t tried it as of yet and $10 per treatment is a bit steep but we will see. But why couldn’t this be a device you buy outright and not have to keep renewing?

My monthly meds fees and co-pays are now up to about $350. I am lucky I can cover this. Hopefully if this new device works it will be covered by insurance.

Best wishes to all of the millions of people out there who have some form of migraine. May a cure be found. In the meantime, I hope something I write about will resonate with you and help you.

PS Don’t give up on CBD oil! I am looking into the different effects of the carrier oils. Most have MCT a coconut oil derivative. MCT might wind you up and perhaps cause anxiety or not allow you to sleep. Pure hemp oil as a carrier might be the better choice. Everyone is different, keep trying. An example of MCT carrier is Charlotte’s Web (CW)
an example of all-hemp is NuLeaf.

This article was published in The New York Times the day after I posted this blog. Good reference. Click here.

The first of the series on CBD oil/medical marijuana, begins here.

The previous post is here

The next post is here