My Cefaly 2 exerience so far... - National Migraine...

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My Cefaly 2 exerience so far...

lyonsden10 profile image
12 Replies

Before I tell you about my experience with the Cefaly 2, I want to give you some background. I'm 62 years old and have been a migraine sufferer for decades (diagnosed in 2000 after being told since I was a teenager that I had sinus headaches - and even had deviated septum surgery at age 16 to correct it - which it didn't).

Further, being disabled with a cluster of other health issues besides migraines (migraine-associated vertigo, chronic dizziness, fibromyalgia, IBS-C, chronic fatigue, MCS, etc.), my sensitivities to foods, supplements, and medication have increased over the years.

MEDICATION INTOLERANCE GROWS

Over this past year, I became intolerant to rizatriptan. It made me feel very sick and left me incredibly dizzy and weak for days. Scary sick. I'd been through a number of other triptans, and all ended up the same way. None of the preventives did anything for me, and some made me too ill to take them. Same with all the herbal and vitamin formulations.

My go to medication became fioricet (with reduced acetaminophen), which I previously alternated with the triptans. They worked great for a long time ... until about six months ago when that, too, made me so sick. And my headaches were increasing.

My doctor had said not to take more than one a week because of fioricet's addictive nature. So, at the end of July, when I realized I had taken three in a week, and two in a day, I decided it had to stop. So I went cold turkey.

GOING OFF MEDS

Because I'm on disability, I'm grateful I didn't have to work while suffering through a two day and then a few days later, a three day migraine, then two weeks later another two day migraine. I was surprised to discover that I could get through these episodes without medication and without having to go to the ER (though there were moments I pondered it). I'll admit that I did take three tylenols once on one of the nine days of migraines. This was all still a huge improvement as I sometimes went five or more days with a migraine.

DISCOVERING THE CEFALY

Then, amazingly, I got a respite. It was during this time I found out about the Cefaly. I read everything I could find about it. My takeaway was that about half the people who used it found it helpful. Some said it helped for a few months, and then didn't.

But I was desperate for a non-pill solution to my problem. I won't go into details about what it is other than to say that the company say it's a External Trigeminal Nerve Stimulator [e-TNS]. To me, it's similar to a tens unit, but at a frequency specific to being ok to use on the head, unlike a tens.

While it was really expensive ($389 including shipping and three extra electrodes), it was less expensive than some of the alternatives (which also use different technology). I received the unit on 9/5 (it's now 9/16). FYI, the U.S. version is advertised as preventive, rather than abortive.

FIRST EXPERIENCE WITH THE DEVICE

It's kind of cute to look at :-), but the on/off button is sort of, for want of a better word, flimsy and hard to reach when the device is on your head (I'll explain shortly why that is important). After charging it, I could barely see the LED light that they say comes on after it's fully charged in a few hours. But you only have to recharge after about 30 uses.

HOW IT FEELS

So, on with the electrode. I considered buying the more expensive hypoallergenic one, but am glad I just got the regular. I had no reaction to the electrode.

When you first turn it on, it does nothing. Within a few minutes, it ramps up (just like it would if you increased a tens unit).

My headaches are on the right side, above my eye. But pretty quickly, I started to have an increasingly painful ache on the left side of my forehead. If you press the button again, it will stop the ramping up where it is at that moment. But I got confused and started to panic, and kept pressing it, thinking that would do something else! Finally, I ripped it off my head when the pressure/pain got too great.

Undeterred, I plopped it back on (very cool how the unit snaps onto the magnets in the electrode) and as soon as I felt that left side pressure ache start, I pressed the button only once. I could barely feel it faintly working. But I was able to do keep it on for 20 minutes.

One problem is that it doesn't beep when it finishes the 20 minute cycle. And I discovered that sometimes, the pain goes away as I relax into the experience. So I sometimes set a timer.

MY THOUGHTS ON THE CEFALY 2 AFTER 11 DAYS

I've used the device every day. Despite their saying it's a preventive, twice I used it a second time when I felt a migraine coming on. It reversed it each time. I've been able to gradually tolerate an increasing strength of the unit. I'm nowhere near being able to use it full force, but I got closer yesterday. FYI, my last full-blown migraine day was August 24th. Again, it's September 16th today. Amazing.

One side effect is that sometimes, my dizziness is really increased after using the unit.

I don't think I would have gotten this very expensive device if they hadn't had a 60 day money back guarantee.

This is my first time posting on Health Unlocked, so I'm not sure I can update a post. If I can, I will try to remember to do this closer to the 60 day mark. But as of now, I'm really glad I took a chance to try it. Not really sure what other options I could afford. Not really sure if any other options are left for me.

Susan

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12 Replies
Cally01 profile image
Cally01

Hi 😁 i used my cefaly for 8mths solid, I've tried all the settings for 2x20mins each time. Level 3 helps me sleep as it numbs my head.I haven't found a reduction of intensity or frequency.

I started using cbd oil and purchased a pair of green migraine glasses which has been a godsend.

I've suffered for decades too, now 52.

I only take triptan a couple of days a month as perimenopause now and it's went crazy but i had migraine for 4yrs solid/everyday.

Now, 10 days migraine free last month and 8 this month so far which is amazing.

Hope you get yours under control. I cut sugar from my diet and drink loads of water!!

lyonsden10 profile image
lyonsden10 in reply to Cally01

Do you have the US version? Mine does t have levels, but you can keep it where it is at any stage. Thx!

Cally01 profile image
Cally01 in reply to lyonsden10

Uk version, 3 setting, can hold it on any setting if you want. 👍

lyonsden10 profile image
lyonsden10 in reply to Cally01

Ah. US version, no settings, but you can pause at any stage of ramp up by pressing button once. Then, you can press again to go up a bit if you keep pressing, it will eventually go to highest setting, but no way to know when that is. Thanks.

Cally01 profile image
Cally01 in reply to lyonsden10

Mine ramps up slowly and feels like someone is slowly boring a hole through the centre of your foehead while hundreds of tiny hands massage your brain 😁 can feel like torture!!

I can pause on a comfortable bit too but always think whats the point, just bring it on 😂.

Take a look at cbd oil 😆

lyonsden10 profile image
lyonsden10 in reply to Cally01

I tried that yesterday and last about three minutes letting it keep going. :-) What is CBD oil? Thx

Cally01 profile image
Cally01 in reply to lyonsden10

It's the therapy side of canabis oil. They use it in patched for fybromayalgia.

I put 2 drops under my tongue and it keeps my migraine at bay all day. I use 2 drops at bedtime and helps me sleep 😀

lyonsden10 profile image
lyonsden10 in reply to Cally01

Ah. Thanks for explaining.

Cally01 profile image
Cally01 in reply to lyonsden10

Your welcome 😁 good luck. Be well.

VickiS84 profile image
VickiS84 in reply to Cally01

Cally01 where do you get CBD oil in the UK? Thx.

Cally01 profile image
Cally01 in reply to VickiS84

I get it from a herbal gp but you can get it at holland and barratt too i think 👍

Sharpey1972 profile image
Sharpey1972

I can pick several things out of this thread which have also helped me. 1 reduce use of painkillers, I was well within the recommended dose of triptans but they still were making things worse. 2 clean up diet, I don't have specific diet triggers but my preventative pills were making me crave junk. I felt much better for leaner meat, more salad, no junk, etc 3 cbd oil, couple of drops occasionally for me as I don't want to become dependant on it 4 Pain to fix pain. I don't have a machine but I apply ice to my head to the point where it's painful. The new pain seems to distract my brain & nerves from the migraine. Good luck to anyone suffering from this awful condition

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