Cefaly

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  • #46095
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    acmeyers568
    Participant

    My neurologist at Mayo Clinic just told me about Cefaly, a device using TENS technology created just for migraineurs. It is only sold in Canada so far, but my doctor has had a few patients buy it and get good results. She recommended I get one for my chronic migraines, but it is really expensive for me and I wanted to find to talk to someone who has used this firsthand before I buy one. Has anyone used this or can you point me toward anyone who has?

    PS – If you have never heard of Cefaly, the website is cefaly.ca. Unfortunately it doesn’t sound like there are any near future plans for it to cross into the USA.

  • #46107
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    Ellen
    Participant

    acmeyers568 – Sales of this item aren’t allowed in the US as you’ve noted. I’ve known a few to try it, including our own Teri Robert here on Migraine.com, however, none have had good results from it I’m afraid. That doesn’t mean it won’t work for someone else, but it’s definitely not the miracle we’ve all been praying for. Not yet anyway…

    Here is how you can get hold of Teri: https://migraine.com/members/Teri-Robert/profile/

    ~Ellen

    • #48977
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      Bunny
      Participant

      Hi acmeyers568. Cefaly migraine device is really helpful for sticking pain. Its quite expensive so don’t use it without your doctor’s advice. I’ve no personal experience, but one of my co-worker use it and feel better. Result varies. Anyway if you want to buy it hopefully this site can help you a lot. But I think not only this kind of device but try alternative medication like magnet band, meditation, relaxing yoga, and balanced diet. http://www.migraineheadacherelief.org.uk/drugless-pain-relief-from-migraines-is-here-at-last/
      Hope you feel better.

  • #46158
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    Teri-Robert
    Participant

    Hello there!

    I got my hands on one a few years ago when they were only recommending it to stop a Migraine in progress. It didn’t help me, and I returned it to the person who owned it. Now that the company is promoting it for prevention, I tried to reach them, but they haven’t replied to me. As Ellen said, it’s not available in the U.S. yet; just in Canada.

    Wish I could tell you more, but until it’s FDA approved in the U.S., I don’t know of any way to try it.

    Teri

  • #46196
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    acmeyers568
    Participant

    Thank you ladies for the helpful info.

  • #46311
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    Anonymous

    I found Cefaly available at Costco Canada online at $249.00 for the device and $36.99 for a replacement set of 6 electrodes. There are over 20 Canadian reviews on the product detail page. It’s quite pricey if it doesn’t work, but results appear to vary widely. Unfortunately, I have no experience with it.

    Does Cefaly have a risk of any serious side effects?

  • #46891
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    Teri-Robert
    Participant

    Anonymous,

    I’ve never seen anything about potentially side serious effects from the Cephaly. That said, I wouldn’t recommend that anyone use it without discussing it with your doctor first.

    Teri

  • #47625
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    Chia24
    Participant

    I live in Canada and purchased one from costco a few years ago. It’s a piece of garbage. It didn’t work for my migraines in progress nor did it work as a preventative. Costco was great and took it back. It might work for someone else, but it was a waste of money for me.
    Shannon

    • #47670
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      Nancy Bonk
      Moderator

      Hi Shannon,

      Thank you so much for sharing your experience with Cefaly. It’s a lot of money for a device they may or may not work.

      Nancy

  • #48651
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    tashamard123
    Participant

    Hi All,

    Last week, the Cefaly device was approved by the FDA for use in the US. My neuro’s office has one and they had me come in for three consecutive days to try it out. I found it to be very painful during the treatment, but am willing to put up with 20 minutes of pain if relief is in sight. Sadly, after my third treatment today, I developed another migraine, so I am not sure it will work for me. The jury is still out on this. I recommend trying it out before purchasing one if you can. I still might buy one, but I need more information about whether or not it has the potential to CAUSE a migraine in the early stages of use. It’s so new, that info is hard to find. Any help would be greatly appreciated!

    I’ve been in about an 8 week cycle of daily migraines with the exception of about 10 days after 1) an infusion at the neuro’s office and 2) an occipital nerve block at the neuro’s office.

    I’m on my second round of oral steroids beginning today. If this doesn’t work, they will admit me to the hospital for a 72 hour headache protocol. I’m not sure what this will entail, but I may learn soon enough.

    Best of luck to everyone here. I hope we all find the treatment that works for us!

    Mardi

    • #48853
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      Nancy Bonk
      Moderator

      Hi Mardi,

      I do hope you are feeling better by now. Were you hospitalized to try and break this nasty cycle?

      Let us know, OK?

      Nancy

    • #52006
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      tashamard123
      Participant

      Hi All,
      I did end up in the hospital for my neuro’s version of the DHE protocol. It helped (though the Zofran gave me a different kind of headache so we changed to oral phenergan) and I was headache free for about 5 days. Then they came back. Once I was able to get my botox (have to wait 3 months between injections) it took another two weeks to kick in and now I’m just FINE.
      Still waiting to hear from insurance about the Cefaly. MAs at the neuro office said insurance is starting to pay for them in the US. I am not sure if it will help, but some of their patients said they had to use it for a few months before they saw the benefit. I’m certainly willing to give it a try! It does cause me significant pain while using it (for my 3 day trial at the doctor’s office) but 20 minutes of daily pain beats daily migraines, as you all know!
      For me, botox has been the magic bullet, but there have been two times when it just didn’t seem to work. I have no idea why but will keep at it.
      Best of luck to all!
      Mardi

  • #48921
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    naturegirl
    Participant

    Hello Everyone!

    I totally get why you should try a Cefaly before buying one – they are expensive. I learned to American version is different than the original. The European version has three settings – preventative, abortive and relaxation. The American one only has one setting. I would love to try one first, but I can’t wait that long until I find one. I am going to order the real deal from Europe. My family lives in Germany and they are going to send it to me. There is also an occipital accessory you can purchase as well which I am going to do too. There is a guarantee on it, so if it doesn’t work, I can send it back. Like everyone else, I have tried everything and hope springs eternal with the Cefaly!

  • #49014
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    Migraine.com
    Keymaster

    Best of luck, naturegirl! Please do keep us posted…

  • #49073
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    bkacz
    Participant

    I have a used Cefaly but haven’t tried it yet. The non US version. I do have a prescription for one but the previously owned one was less expensive. I’m curious about the occipital accessory? I haven’t heard of that.

  • #49107
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    Kerrie Smyres
    Moderator

    The occipital accessory is called the “Arnold kit,” but they’re not selling it on the US website. I’ve contacted the company to see if it is possible for someone in the U.S. to purchase it and will let you know what I hear.

    Kerrie

  • #49193
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    Kerrie Smyres
    Moderator

    According to a company representative, the occipital accessory is not FDA-approved and isn’t for sale in the US. Non-US distributors are not supposed to send it here, though you might find some who will.

  • #49222
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    bkacz
    Participant

    Thanks Kerrie, I’ll see if I can get one. One of our daughters sometimes works in Canada so if she does I might see if she can get one. I’ve used the Cefaly twice now at the highest setting for 20 minutes. The first time I’d had an all day migraine but what I would call a medium one that got worse as the day went on. I used the Cefaly that evening, it took the migraine away, but it came back shortly after so I took Sumatriptan and Zofran. Last night I got a headache in the evening and I’m not sure it was a migraine. I used the Cefaly again and it went away and stayed away. So I was happy for that. I almost always wake up with a migraine when I get them and they start at the back base of my neck so I’m wondering if the Cefaly will be the answer. I will keep using it and have hopes it will be the answer.

    • #49253
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      Kerrie Smyres
      Moderator

      Best of luck. Please keep us posted on how it works for you.

  • #49334
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    mrsbrimtown
    Participant

    I just got mine today.

    I was able to stop the intensity by pushing the button in the middle. I stopped it when it was sort of uncomfortable/unpleasant. But within a short amount of time it just felt like tingling. Tingling up into the scalp and across the forehead and face. Very strange.

    It’s been a few hours now and my face and head feel sort of like it always does when I need to relax ASAP or get a migraine.

    It beeped when the 20 min. is over. Do all the models do that?

    I’m crossing my fingers on this one. My doc wants me to try botox next (and that’s seriously expensive and I HATE needles).

    Hey, good luck all around for trying this thing!

  • #49343
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    Kerrie Smyres
    Moderator

    Yes, the beeping is normal.

    I’m glad you were able to tolerate the sensation (though I agree it feels pretty weird!) and hope you get some lasting relief from it.

  • #49422
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    Kerrie Smyres
    Moderator

    Update on Cefaly availability: As of April 9, 2014, the order page of Cefaly’s U.S. website says, “Order intakes on hold for a week because of limitation in the supply chain.” This notice apparently went up today, so I hope that means you’ll be able to order from them next week. I’ll keep an eye on the site and let you know if anything changes.

  • #49526
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    acmeyers568
    Participant

    Does anyone know how to get an original version of the Cefaly sent to the US? I would like one but do not want the “dumbed down” version the FDA approved for sale here inside the US. None of the other Cefaly websites will ship to the US and the Canadian Costco and Amazon are out with no restocking in the foreseeable future.

    If you have an original Cefaly – the kind with the 3 settings: preventative, abortive, and relaxation – or you know some one who and no longer wants it, please let me know. Or if you have any other ideas for me, I’d really appreciate anything and everything you may think of.

  • #49608
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    Kerrie Smyres
    Moderator

    Cefaly has removed the “not currently taking orders” notification from their website. They appear to now be shipping previously ordered products and taking new orders.

  • #49684
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    Anonymous

    hi guys. i live in northern europe and just ordered mine through friend in canada. funny i did not know they are available in europe. i though u can buy them only in canada..maybe some of u will lough..but, how i even came across it..i had a session with one psychic from isa and he asked me..out of blue, do u suffer from head aches. i said, yes i do. and he said, well, soon u will come across some kind of thing u can put on u head and it will help u with them. he described kind of how it will look. funny, but that evening just by accident i came across this thing in internet. i am not sure if it will work, but i have to try. will let u know, when i get mine. also, for people who suffer from migraines..try to read book, You are what u eat. its incredible and my friend, who suffers from migraines follows those rules what to eat and what not, she never had migraine again..i am too lazy kind of to put such an effort – love my food too much:(( other thing…check u spine..specially neck part…often people who have migraines have some deformity in their spine..i did not know about mind till they made me do magnetic resonance scan…and u know, what else works for me for now. i take ibumetin..the simple 400 mg per pill – like 2 pills and go to run for 30 min – u have to run fast so u sweat a lot..pain is crazy..i always cry when i do that, coz running with migraine is not fun at all..but hei…u will be surprised how well it takes it away for hours. try it. i discovered it by accident. but before u go running u have to take ibumetin or any other pain killer like that. ok, thats my experience:)oo, and one more thing. couple of years ago we lived in india, and there was one women who was p[practicing pranic healing…dont ask me, how she did it.. she was doing something with crystals, and made me think of certain experiences, what opened such an emotions in me..she took away my migraines for half a year. since i don’t live in india any more..no more option like that:( i hope my experiences helps somebody, coz i know what u guys go through..;)

  • #50116
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    Listkeeper
    Participant

    Hello Everyone,

    I ordered my Cefaly the day the FDA approval headline hit. I have used it for a week (the version that has been called the ‘non-US’ version). I believe it says it takes 2-3 weeks minimum to show benefits. There has been no change to my headache frquency yet. It looks like I snuck one out before they required a prescription. I’ll keep you all posted on my progress.

    Vin

  • #50233
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    California Girl
    Participant

    Hello there,

    I’m considering to subscribe for a 40 day trial for Cefaly which costs € 49. At the end of the trial you have the option of sending it back or either purchasing the apparatus.

    However I have two questions; I wonder why the US version is different to the European one and was also wondering whether the treatment was painful ? Some of you mention that the actual treatment is strange. I wonder whether it would have something to do with the actual apartus being attached to the head ?

    As I live in Europe I would be getting the original version with the three settings.

  • #50254
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    Kerrie Smyres
    Moderator

    California Girl,

    FDA only approved Cefaly for prevention, so that’s the only setting that’s available in the U.S.

    Some people find the sensation painful, others don’t. The intensity increases during the program and you can stop it from increasing at any time. If it is painful for you, you can try using it at the lowest intensity for a while to get used to it.

    Good luck. Let us know how it goes.

    Kerrie

  • #50260
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    California Girl
    Participant

    Hello Kerrie,

    I think that I will have to wait until I get back from my holiday before ordering it for the trial period.

    I certainly will do more research and find out how it works.

    It’s a shame that there are not more statistics available on the product’s success rate. Furthermore, I also
    wonder why the doctor that I saw for my migraines didn’t suggest that I try the product.

  • #50287
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    Kerrie Smyres
    Moderator

    It would be nice if there were more studies. Although it’s not a formal study, the U.S. approval kind of feels like a test to see what a large number of people think of it.

    The studies on it’s efficacy are fairly new, so your doctor may be cautious about suggesting a treatment for which there’s not a lot of evidence.

  • #50650
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    lblack75
    Participant

    Hi Everyone. I live in Canada and have had a cefaly machine for about a year. I haven’t used the ‘preventative’ function – I’ve used it only when I get a migraine. I can share the following:
    - the first time I used it I did find it painful, but over time I have become accustomed to the intensity of it
    - for me it does not take away my migraine, but what it does do for me is ‘block’ or ‘dull’ the pain while the treatment is going on…my migraines tend to last three days so it’s nice to get a bit of a break! I usually do 2 cycles in a row, and this allows me to relax and sometimes fall asleep as well.
    Lizzie

  • #50698
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    BayouTigress
    Participant

    Hi everyone,

    I ordered a US unit from Belgium and it has arrived today. I suffer usually 21 out of 30 days a month. So I will be trying out the preventive mode starting tonight. I have not seen the instructions yet but wonder if it is better to use it at night or in the morning? Any advice?

  • #50707
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    California Girl
    Participant

    Hello BayouTigress,

    I’d be interested to read your feedback as I’m also planning to order a Cefaly for a trial period after my holidays.

    I also used to suffer with the same amount of migraines that you do. However since I have given up sugar and carbs I usually get 2 per week.

  • #50710
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    BayouTigress
    Participant

    Hey California Girl,

    I complete my first session last night. After I got it out of the box and read all the instructions I was to curious to wait. It feels really weird. Starts out feeling like very light stings and progresses to feeling like every muscle in the top of my head are all contracting to a single spot on the top of my head. Then it changes and feels like all the muscles are contracting in a clockwise direction. The area that is impacted is across my forehead to almost the top back of my head which actually ends up numb for part of the session. It does not hurt exactly just feels really weird. I can see why not every cares for it. Being an engineer, I sat with my eyes closed trying to figure out what each sensation really was doing. At one point the band felt like it was slipping down my forehead but in actuality it was not moving at all. It was just the result of the electronic pulse the device was giving off. I had a slight migraine when. I put it on. At one point I thought he device was going to make it worse. But that did not happen. Woke up this am with no headache. I do not think the device worked that quickly just that today may be a headache free one regardless. I am a little concerned about the fact I did not sleep well last night. Insomnia is a potential side effect in a small portion of the users of Cefaly. It could be that I had caffeine to late in the day yesterday. I am going to cut off my caffeine intake at lunch today and see if I still have a restless night tonight. I will continue to keep you posted as I gain experience using the headband.

  • #50716
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    California Girl
    Participant

    Hello there,

    It is great to be able to get some feedback as many people would like to use this device. I must say that the sensations that you describe do seem a bit scary. Anyway, anything is better than a full blown migraine including all the medication that one has to take !

    As I’m in Europe, I will be trying the device with 3 settings so I don’t know whether it would make a big
    difference ?

    I’ll continue to watch this thread for your precious feedback or ‘diary’ of a Cefaly user.

    I hope that it will give you some relief.

    BTW – I have also had some relief during these last few day with caffeine. A cup of strong coffee has certainly given me some or complete relief for minor attacks.

    Thank you for posting !

  • #50902
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    BayouTigress
    Participant

    Well so far I have little to report. I have gone through 4 treatments and have had migraines every day. I have used the Cefaly while I had a migraine. It did relieve it but only for about 20 minutes, then the migraine started coming back. But it seems all migraine preventatives take time to work so I am not giving up on this quite yet.

  • #50938
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    California Girl
    Participant

    Thank you for your update.

    Do you still take medication for migraine relief or do you just rely on the Cefaly device ?

    Fingers crossed that you will have a success story to tell!!

  • #50941
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    BayouTigress
    Participant

    Hey californiagirl, at this point ai am still taking relief meds, Zomig and promeathazane. At least I know what triggered my migraines this week as I started my menstrual cycle yesterday.that is usually when my migraines start. So the next couple weeks will be interesting to see how many migriane’s I have as the time mine are the most frequent are from a couple days before through 2 weeks after my cycle.

  • #50950
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    California Girl
    Participant

    Hello BayouTigress.

    I hope that you’ll get some relief with Cefaly as it is annoying to have to rely on Triptans and other strong medication for killer migraines. I usually take a 100mg of indocid ; Indometacin or indomethacin is a non-steroidal anti-inflammatory drug.

    I am also following a low carb diet and have virtually eliminated sugar and refined carbs from my diet. I haven’t had a bad migraine since the last 2 weeks which is unusual.

    Keep up the experiment and the feedback. I’m eager to read your comments.

  • #51148
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    Caroloaltman
    Participant

    Hi

    I am new to the forum. I have had migraines for about 12 years. Used to be daily and now down to about 1 a week. Have tried everything in the past. I think diet changes and use of magnesium has helped but I still get at least 1 a week. I think mine are occipital and also reboudn from immitrex and cafergot.

    Have been using Cefaly for about a month. I went from a migraine once a week and now after a month…drum roll please…..I have a migraine once a week. It has not made an ounce of difference. I think if your headaches are frontal and trigeminal nerve related or stress related you might get some reliefe but it has not helped me one bit and I will probably sell it or return it.

    I am glad that it does offer relief for some people. I am trying organic sulfur now and will report back if it helps.

    carol

  • #51154
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    Listkeeper
    Participant

    Hi Everyone,
    I have used my Cefaly every night (on setting 2) for about a month now. I can’t say I have noticed any improvement in my headache count (I get 5-8 a month). The directions say to do it at least twice a day and that it could take weeks to see improvement. I’m not giving up, but will try to start twice a now. I’ll keep you posted

    Vin

  • #51601
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    BayouTigress
    Participant

    Well I have been using mine daily for just over 3 weeks. The first electrode lasted for the full 20 days. In fact I probably could have gotten a few more days out of it but was worried that the intensity had dropped off. But new electrode seems to feel about the same as the old electrode right before I changed. I am seeing a little bit of improvement. I have gone for a few days in a row without a migraine. This was rare before starting the Cefaly. Unfortunately I am having a hard time remembering to journal my experience. I have to do better at the journaling thing!!!! I have developed a new symptom, vertigo. Not sure if it is related to Cefaly use as it is not a listed side effect.

  • #51970
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    LilyB
    Participant

    Just to chime in with my experience… and ask a question at the end

    I got a Cefaly in April and have been using it regularly, almost every day other than a few days after I got my first round of botox shots – the neurologist who did the botox said not to for a few days.

    My experience: The sensation is weird and uncomfortable at first, but after a week or so I started to find it soothing. I have not noticed a decrease in headaches but it does feel like a non-pill-popping option for me when a headache is starting or on days where my head is more annoying than full-blown migraine. It helps me relax, sometimes I doze off (though the beep at the end wakes me up.)

    Like Bayou Tigress, my worst time is a few days before my period until two weeks after. I never got headaches until my early 40s so I think they are perimenopausal-related, and if the various other things we are trying don’t help my neurologist wants me to see a reproductive endocrinologist who has a special interest in hormonal headaches.

    Usually I have annoying discomfort (pulling, tugging, or a painful bruise feeling) almost every day, usually around my occipital nerves and big fat migraines (spike in the eye, sometimes through to the ear) usually 4-8 times a month. I take Maxalt and/or Advil for the headaches which usually help, and Amitriptyline as a daily preventive. I’m not sure it is working much on the headaches, but my mood is better and I am going to try upping the dose at some point.

    l too have developed a bit of vertigo since starting the Cefaly. But my neurologist is convinced the Cefaly is not the problem – she is not sure it can help but says it can’t hurt and vertigo is often a variation on the headache in migraine. The Cefaly isn’t more or less uncomfortable when I have the vertigo. I don’t mean to suggest that it caused the vertigo – I doubt it – but it is interesting to me that you have developed it too.

    My question: There is an attachment for the Cefaly called the “Arnold Kit” that lets you stimulate the occipital nerve. I think someone mentioned it above – any luck getting it from Cefaly or elsewhere? My neurologist said if I can’t get one, maybe just turn the thing around and stick the electrode on the back (I don’t think it would stick unless I shaved my head….)

  • #52015
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    BayouTigress
    Participant

    Hi LilyB, I had not heard of the “Arnold Kit” and it was not an option when I purchased my Cefaly.. The only two things I could buy were the headband and the electrodes. I brought mine in to my office as several people were asking me about it. One of my guys put it on his head without the electrode and felt very little. So I agree with you that a shaved are of your head would probably be necessary to attach the electrode to the back of your head. I do remember reading in the instructions that they do not recommend or approved of the device being installed in any other location or orientation other than on the forehead.

    If you do see a reproductive specialist with interest in hormonal headaches, I would love to hear what thy say. I am on Depo Provera shots on a 10 week interval. The recommended frequency is 12 weeks but mine wear off after 8 weeks and the 10 week interval seems to be the least frequency my Dr is comfortable with.

    Lisa

  • #52072
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    LilyB
    Participant

    I just got an email back from Cefaly, that the Arnold kit is not approved in the US and they can’t sell/ship it here.

    Maybe I’ll see if a friend outside the US would be willing to get me one…

  • #53115
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    jcfried
    Participant

    I began using the US FDA approved Cefaly a few days ago. I have been using HEG (Hemoencephalography – pIR http://en.wikipedia.org/wiki/Hemoencephalography) twice weekly to good result: reduced effect of triggers (bananas, chocolate, dehydration, and more) and significantly reduced frequency of bad migraines with aura. The effect of the daily Cefaly has been interesting in that it revealed that i tend to have low grade migraines quite frequently and the Cefaly stops them at least for a few hours. Since i’ve only been using them for a few days, its too early to tell just how much this will help in the long term, but i will post updates over time.

    One thing that surprised me is that placement of the gel patch is critical. I was placing it a millimeter above my eyebrows and that appears to be to high. So, today i placed it more closely to my eyebrows. Only time will tell.

  • #53386
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    naturegirl
    Participant

    I was able to get the European version of the Cefaly from a family member who lives in Germany. I had really high hopes and used it as directed. Sometimes I thought it worked, and other times I wasn’t so sure. I had several severe headaches during this time. I stopped using it to see if the severe headaches would subside; they did. If anyone who is looking for the European version, I can sell it to you at a discount.

    • #54164
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      jcfried
      Participant

      I’m interested in the European version. How much would it cost and how would we work out the transaction?

  • #53388
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    naturegirl
    Participant

    I was able to get the European version of the Cefaly from a family member who lives in Germany. I had really high hopes and used it as directed. Sometimes I thought it worked, and other times I wasn’t so sure. I had several severe headaches during this time. I stopped using it to see if the severe headaches would subside; they did. If anyone who is looking for the European version, I can sell it to you at a discount.

  • #54166
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    naturegirl
    Participant

    Hello jefried! Contact me at **** and we can discuss off forum so we don’t bog down everyone else!

    EDITED PER THE TERMS OF THE WEBSITE TO EXCLUDE PERSONAL CONTACT INFORMATION

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