New here & Reporting on the Cefaly Dual D... - Migraine Support

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New here & Reporting on the Cefaly Dual Device for Migraine Treatment & Prevention

Sandmeister profile image
5 Replies

Just received the Cefaly Dual (approved by FDA Nov 2017). 1st setting is for Acute (100 hz @ 60 min) to treat a migraine. 2nd setting is Preventative (50 hz @ 20 min) to use daily. So far I have used it twice (I've had it 3-days but had to charge it and read the instructions the first night). As with other's posts, my initial experience has been intense! Unlike the instructions that describe a sensation of your hair standing on end, I have felt extreme pressure in my forehead, particularly between my eyes and a very strong tingling sensation into my eyes and eyelids. On the first day, the tingling was primarily into my right eye and not so much my eye lid. The pressure in my head was intense and I felt like there were tiny hammers pounding on my forehead. I did eventually hit the button to stabilize the intensity and prevent it from further increasing and made it the entire 20 minutes. I felt fine afterwards, however, while I have always had tinnitus (ringing in my ears) it seemed worse that day. My second treatment was similar but more intense. I let the intensity increase higher than day 1, but eventually did stabilize it. During this treatment I noticed the intense tingling in both eyes AND eyelids. No way could I open my eyes to do anything, so I relaxed. Further into the tx. I felt like my forehead muscles were actually moving around. It's crazy but it's almost as if there is this little battlefield on your forehead where all of this crazy activity is going on and then it's over. I'm not sure how people work, read, etc. while using the device, unless the tx gets easier over time. Don't be afraid to try it! The point of sharing this is that there is no mention of this in the literature. And when your trying the device and suddenly feel all of these strange sensations, you may find some peace in knowing that others have experienced what you may be experiencing and you won't be alarmed. A few other things worth mentioning. I've had migraines since my early teens. They run in my family. I've tried beta blockers, calcium blockers, antidepressants, supplements, massage, acupuncture, biofeedback. 100 mg Immitrix tabs and injections are my salvation. I've been hospitalized numerous times. I hit menopause 5 years ago and they got worse. This past August I had an acute attack and had them daily for almost a month. I went on 100 mg Topamax/daily. It has worked well, and I average 3-5 migraines/mo. and the side effects are annoying. (Stomach issues, tingling in toes, edginess) Unfortunately, I live in the OH river Valley and have always lived close to this region, which is notoriously bad for migraines. When I'm out West, I'm almost...almost migraine free! Since moving isn't an option right now, maybe the Cefaly will work. Will keep you posted!

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Sandmeister profile image
Sandmeister
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Rachelcar profile image
Rachelcar

Hi Sandmeister, my story is similar to yours. I’ve have migraines since childhood and they run in my family. Like you I’ve tried every med, acupuncture, reiki, nerve block and Botox. I’m still on topirimate (topamax) after 10 years but it’s stopped being effective. They won’t take me off it until they find a replacement!

I too recently got a Cefaly Dual as I’m sick of taking meds and being injected.

I love how you described the feeling you are spot on. It’s very strange at first. I have also used the 1st setting when I had a migraine and it was actually really nice. It seemed softer and less vigorous than the preventative setting, more of a massage and I fell asleep. Like you, I can’t open my eyes with it on, I find I have to lay down and completely relax.

I wish you well with your device. Please keep me up to date with how it’s going.

Sandmeister profile image
Sandmeister in reply to Rachelcar

Thanks Rachelcar! I appreciate you sharing your story. I ended up with an awful virus and wasn't up to using it, but will get back to it. Did you have any side effects with the topirimate? I have a lot of tingling in my toes and some stomach issues. Other than that, it hasn't been too bad.

Rachelcar profile image
Rachelcar in reply to Sandmeister

No to be honest for years it worked well for me but the last few years it has stopped being effective. I must admit when I first started taking it food tasted awful. Chocolate was foul, and other food got a strange taste. I didn’t lose weight on it either, shame!

salsachick18 profile image
salsachick18

Hi... I've just started with Cefaly... I'm in the UK so have one with 3settings and the 3rd one is meant to be for stress relief/ relaxation but not sure it does (although I did actually fall asleep last night with it on). I'm going to keep going with it even though I'm having the same reaction to it as you guys and hope my tolerance builds up. I was on topiramate for years and eventually ended up on 300mg/day! The side effects were horrendous but only discovered that they were full on side effects when I went back to see the neurologist again and he lowered my dose. I'm off it completely now and just relying on Cefaly... Is hard as I'm getting loads of migraines and they are affecting work. I already have meetings every 6 weeks with my manager and HR to see if I'm coping ok, as I'd had 4 occurrences of absence and they wanted to put me on a cause for concern until I pointed out that they can't under their own sickness policy. I struggled through work today (college lecturer) after starting with another one this morning after getting to work and finished teaching at 4pm, so asked if I could go home early (take time owed) and I was told that if I wasn't well enough to be at work I couldn't take TOIL and it would have to go down as sickness... For 1 hr! Needless to say I stayed... But not happy. Going home and curling up on the sofa and use my Cefaly...

Hope everyone sees improvement with symptoms.

😊

Rachelcar profile image
Rachelcar

Hi Sandmeister

I too work (or try to work) in education. My manager and HR are not sympathetic at all to my migraines or me. I have always been up from about them and my appts, treatments etc but all they care about is me being in 100%. Well that isn’t happening! Like you some days I struggle through and then come home and hide in bed. My poor family!

By the way. I’m in the UK too.

Good luck with the Cafely