Migraine

5 Days of Cefaly

Roughly a month ago many of you listened to my ramblings throughout the Migraine World Summit, and many of you learned – like me – that there are external devices that can be used in the acute and preventative treatment of migraine.

And so, two weeks later I walked into my neurologists office with a lengthy lists of what I wanted to do moving forward with my care and healing journey.

My doctor opened the door, hesitated to walk in and paused asking if today was one of those days where he should go back and grab the ax and have that be our main course of action. To which, I was able to humorously respond that the ax would be of no use but I did want to explore some shock therapy. Quite a lovely transition into asking for a prescription for the Cefaly device if you ask me.

One prescription, five-hundred dollars, and a week later my Cefaly device arrived for me in the mail.

Before I dive into my first week using Cefaly, I want to explain what it is.

It is not meant to sit in Mr. Plant and has no benefit to him. I probably shouldn’t put the Cefaly device in dirt, but hey the photo was aesthetically pleasing.

Description directly from Cefaly.com

Essentially, this device is a tens unit for my face. I apply an electrode – a padding with sticky gel on one side – to my forehead and attach the device to two magnetic nodes on the electrode positioned directly over my third eye. This device then sends electrical impulses through my head.

What does electricity have to do with our brain?

This device is intended to rewire our brain. Migraine patients have overstimulated nerves that fire constantly and remain sensitized when they shouldn’t be. This therapy takes the approach of activating these “pain channels” and over time reducing how often they fire and working to desensitize our nerves and these pain pathways.

So, there’s two settings: acute and preventative. The acute lasts for 60 minutes and you use it during an attack. The preventative should be done everyday for 20 minutes. The device is available to purchase for acute or preventative treatment. I chose to purchase the device that was a hybrid offering me both treatment options.

This treatment excited me a lot because it is truly a non-invasive treatment option that has very minimal side effects. It also has a primary goal of reducing how often we have to rely on other medications. As a 21 year old who takes 3 pills and nasal spray each morning, 1 pill with dinner, and 4 pills at night… this is huge (and yes some of my pills are vitamins but nonetheless that’s a lot of pills).

Friday, April 26th – Day 1

I did a bit of a live update throughout my first 20 minute session on Twitter, so some of you are already aware of my very initial reactions.

The device starts up slowly and the intensity increases, it’s my job to press the button when I feel as if the intensity is too much so it will level off. Two minutes in and I was already hating the entire experience. Prior to starting my pain was a low 5/6, but as the electrical pulses began to spread across my head, the pain moved up to a 7 and slowly up to an 8.

The electrical pulses went directly to areas where my migraine pain is very prominent. I could feel it above my eyebrows, in my temples, and at the base of my skull. As time progressed, the pain became very present behind my eyes. This heaviness made me unable to move my head. If I were to look up or down, this pain sensation would shift with it. Same if I moved my head side to side. I had to sit with this pain, unable to continue watching TV, and simply wait for the session to be over.

After the session ended, the tingling remained for a few minutes, but the pain I experienced went away. I still felt some pain at the back of my skull for about an hour after my session.

The one side effect I experienced out of potential nausea, jaw pain, and electrode site irritation was jaw pain. I have to push myself to constantly unclench my jaw as this is an area I hold a large amount of my tension. It only makes sense that in stimulating pain pathways, an overly agitated area like my jaw muscles would feel some lasting pain.

Initially, I was not excited to continue trying this treatment. I was left wondering if I would always have an increased pain level during the treatments and what that would mean on days where I was already in higher levels of pain. It also made me question if I’d be comfortable with the acute treatment.

Saturday, April 27th – Day 2

I was a lot more comfortable on day 2, and the process seemed a bit easier.

As I started up the session, I paid attention to the intensity and tried to really pinpoint where a good threshold would be for me. I didn’t experience the same increase in pain as I did the day before, and was able to do the session while being distracted by the TV.

I did once again experience the jaw pain.

Monday, April 29th – Day 3

Guess who FORGOT to use the Cefaly device on Sunday… that’s right, it’s me.

The comfort I’d had on Saturday was not present on Monday. It is clear that in missing the day, my nerves have to readjust more to being stimulated. This session was a bit more painful and I was a lot more aware of the electrical sensation.

Tuesday, April 30th – Day 4

This session was a bit of a wreck and I was having a truly shitty pain day – enough so that I ended up needing to take my emergency DHE-nasal spray to no positive avail.

The good news was that the Cefaly device did not make my pain worse during my 20 minute session and was quite tolerable. This bodes well towards trying the abortive 60 minute option.

I did however manage to mess up this session a bit. I couldn’t get the intensity level quite right and it ended up a bit too high. I had to reset the session a few minutes in and simply try again.

Wednesday, May 1st – Day 5

I felt very comfortable with this session. Setting it up was easy and I’m clearly one that gets too comfortable too fast… I forgot to press the button twice to select the preventative setting so about half an hour after hitting start I realized hey, this thing didn’t shut off after 20 minutes… silly me.

I believe I had the intensity at a bit higher setting and it was very comfortable for me. I’m not quite sure if the abortive setting is different than the preventative in terms of how it stimulates, so I’m hoping the added 10 minutes doesn’t impact my attempt to use this in a preventative way.

I didn’t notice much jaw pain after this session.

Overall, I’m excited to be trying Cefaly and am very optimistic with it. Like all treatments, it isn’t an instant fix so I’m looking forward to seeing how things improve over the next few months and also applying it as an abortive treatment.

Feel free to drop any questions you may have in the comments below and I’ll do my best to answer them or direct you to some good resources!

A.

*Update 7/9/19*

After just over a month of using the Cefaly device, I decided it wasn’t doing me any good. I had used the device on the abortive setting on a few separate occasions.

The first abortive session I didn’t make it through. After about 40 minutes, the sensations were too much to handle and I had to quit.

On the other two occasions, the device was alright. I found that laying down helped tremendously and that during the hour long session I was in a bit of a trance. I even managed to continue increasing the amount of stimulation without causing pain. However, the relief was only felt while the device was in use and the migraine pain returned shortly after any movement.

I’ll admit, I didn’t use the device every single night like I was supposed to, but I used it for over 2/3rds of the time.

So why did I choose to return it, and do so halfway into the trial period?

  1. I found that more often than not, I had to use Cefaly on a very low setting because I did not tolerate the higher settings very well. It is suggested that we would get used to the stimulation and naturally be able to be at the highest setting, but my experience proved to not even have me on track to be getting close. I never once reached the highest setting.
  2. The jaw pain side effect occurred on and off and I’ve actually had much more consistent and higher intensity jaw pain since using the device.
  3. I experienced no benefit that could be directly linked to the device and felt like I was wasting my time continuing to try it out.

At the end of the day, I simply don’t believe I was a good candidate for this treatment. I am prone to allodynia and I believe it presented itself often during the treatments making them ineffective for me.

I considered keeping the device simply for abortive purposes and as an option for when I stopped using abortive medications, but here I sit without this device and almost two months off of abortives and I’m doing alright. It was more valuable to me to receive a refund that I could put towards other therapies than to have something on hand for a “what if” scenario.

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