After trying the Timolol Maleate eye drops for 6 weeks, I was feeling a lot better, but I was still getting migraines (in addition to the sensation of constant rocking/bobbing/swaying, of course). For me, “migraines” mean head pain, brain fog, vertigo, visual auras, bursts of tinnitus, and numbness. I was still experiencing constant light sensitivity, and the increased time on technology required to work from home was challenging.
My doctor prescribed the Cefaly device. According to the website, it is an external trigeminal nerve stimulation device. It sends tiny electrical impulses to modify pain transmission and processing in the trigeminal nerve, which plays a large role in migraines and sensory sensitivities.
There are two ways to use it:
- Preventative Setting: Use 20 minutes daily to prevent migraine attacks and symptoms.
- Acute Setting: Use 60 minutes to stop or reduce migraines during an attack.
To use the Cefaly, you place an electrode on your forehead, which the device sticks to (it’s a magnet). The Cefaly vibrates, starting almost imperceptibly, then increasing the strength of the vibrations to calm the trigeminal nerve.
For me, the hope was that the device would not only prevent or stop migraine attacks, but that it would also reduce light sensitivity and the constant motions of Mal de Debarquement Syndrome.
Following my first use of the Cefaly, I felt a slight headache, but also a rush of calm and ease. I was excited to keep using it.
Later that day, I started to feel vibrations when I wasn’t wearing the Cefaly. I wasn’t surprised because this kind of thing had happened to me before. I believe it’s a symptom of MdDS (but if you have VM and this happens to you, too, let me know!). As you know, I relive the motions of boat rides and other transportation, but I also have to avoid things like electric toothbrushes or rolling chairs, because if I use them, I tend to relive those motions later in the day throughout my body (e.g. spinning toothbrush = feeling spinning motions, rolling chair = feeling like I’m rolling when I’m not moving).
The vibrations didn’t really bother me at first. They seemed to block out the rocking/bobbing/swaying, so vibrating instead felt like an improvement! After a week though, it was starting to drive me crazy. I felt like my migraine symptoms were improving, but I was going about my day surprised by vibrations in my legs, arms, face, and feet, lasting minutes to hours. Sometimes my vision looked like it was vibrating.
Ready to give up on it, I messaged my doctor. He said to keep the Cefaly on a lower setting (by pressing the button on the front) to stop it from increasing the vibrations. This would hopefully keep the vibrations low enough to help, but not strong enough to relive them. I was skeptical, but I figured it was worth a shot.
It totally was. The vibrations quickly became tolerable and less frequent. Over the next few weeks, I started to feel really good. I didn’t have any migraines. I felt calmer. I noticed that I was working on my computer without light sensitivity glasses. Before the Cefaly, my eyes felt strained just looking at a screen without them, but now I wasn’t even noticing if I had them on or not.
One night, as I lay in bed, I could feel the bed beneath my body… and nothing else. No movement. I figured it was just a coincidence, and I fell asleep.
A few nights later, the same thing happened.
One day, I felt a rush of movement all of a sudden, rocking front to back. The motion wasn’t uncommon for me, but the fact that I hadn’t been noticing any motion before this sensation was the remarkable part! Was I actually having periods of stillness?
I can’t say with 100% certainty that I am. I’ll be honest, I’ve been in constant motion so long that I’m not totally sure what stillness feels like. I am sure that compared to what I’ve been feeling for two years, this is a significant improvement.
The dreaded week came where I get my monthly migraine(s). Usually by 4:00 on the first day of my period, I’m pretty much done for. Sometimes the attacks themselves can last up to 3 days. Usually I feel “off” for the next 5-7 days with brain fog, head pain, and increased dizziness.
As always, around 4:00, I could feel a migraine coming on. I put the Cefaly on the acute setting. When I took it off, I felt normal! I went on with my evening without restrictions! I started to get head pain again around 9:00, put on the Cefaly again, and all symptoms disappeared. The rest of the week, I felt good! No migraines. No increased dizziness. No auras. No brain fog.
A few other days I felt a migraine coming on, I used the Cefaly for 20-60 minutes (depending on how much time I had). It has worked every time. It’s not perfect, but I’m always able to function normally without head pain, even if I have other symptoms.
I’ve had a few more nights and early mornings feeling completely stable. I haven’t had a full migraine attack since I started using the Cefaly. My computer and phone had been on “night mode” orange for two years, but last week I finally changed the settings back to normal with no problems! I stopped reliving the Cefaly vibrations all the time… now it’s more like an occasional, short-lived sensation. I continue to feel rocking/bobbing/swaying motions, but I would say I feel anywhere from a 30-60% improvement on average.
I have no affiliation or connection to the Cefaly company. I don’t get any money for posting this. I am simply sharing because it has helped me so much! I honestly have hope that if things keep going this way I could feel normal again. I’m so grateful to have something else in my toolbox to help me cope with my symptoms.
There are a few other changes in my lifestyle that I want to mention, because I think often it’s a mix of factors that allow the body to heal. I have been taking supplements since March (Co-Enzyme Q-10, Magnesium, Vitamin D, Vitamin B2). I have been taking probiotics and experimenting with dietary modifications since December. Like most people, I have spent most of my time at home or outside since March, which I think is relevant because it has helped me limit my exposure to some triggers (although I’m spending more time on screens). I quit my stressful full-time job to start my own business, which isn’t necessarily less stressful, but I absolutely love my work now and feel more positive about the future.
Any questions? Ask me anything in the comments!
If you are looking for any support throughout your healing process, I would love to meet with you! I work with my friend Kelly, an occupational therapist, and we provide solutions and strategies to help people make changes to their daily lives, reach their goals, and start living better days! To find out more or to schedule, visit our website: https://www.solutionsforabetterday.com/forindividuals or message me!