Cefaly Anti-migraine Device

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  • #40605

    Penny
    Participant

    Before I spend $400+ for this item, I would like to know if it really works. I suspect the reviews I see on different websites may not be accurate. Has anyone tried this device? I’m starting the second day of a migraine, and I’d really like to try something that would prevent or abort these bothersome painful episodes.

  • #43052
    Profile photo of Ellen Schnakenberg
    Ellen Schnakenberg
    Participant

    Penny – our advocate Teri Robert has said she tried the device as an abortive only and didn’t have any response to it. It is now being suggested that it can be used for prevention, and as yet I know nobody who has tried it for that. It is very new here in the US, so it’s up to you, but you might want to hang onto your money until someone you trust has the chance to tell you about their experience very specifically.

    Additionally, don’t forget that it may work on one patient, and not on another. There are no cookbook methods for us finding things to help our Migraines. Like you, I hope that this will be at least partially successful for patients and I’d love to give it a go myself and let you know what it was like, but like you, I don’t currently have the cash to hand them for something that may or may not work for me.

    I guess that option is always there to purchase it and, if it doesn’t work, resell it and let someone else have a try at it. Just a thought.

    • #52171
      Profile photo of Pat
      pdonovan
      Participant

      Penny,
      I ordered the Cefaly online about a month ago. I paid $359.00 for it and that included shipment from Belgium. I have tried every preventative know to medical science, had the nerves in my neck ‘cooked’ every alternative medicine treatment (including accupuncture), and even on methedone for 3 years. These migraines have ruined my life, but my doctor thought I should try this cefaly. She said she had read all the literature and the science was sound. She wrote me a prescription which I had to email to the company. They had wonderful customer service. I also had doubts and thought it was a lot to spend if I had no results, but then I thought of the expense of relpax every other day and decided to give it a try. I HAVE ONLY HAD 2 MIGRAINES IN THE PAST MONTH!!!!!!!i AM SO AFRAID that saying this aloud will jinx me and that I have just stunned the little demon that lives in my brain. I use it for 20 minutes every day, and it does hurt like the dickens during those 20 minutes, but heavens – it’s not much to complain about for this kind of relief. I know it may not work for others, but for me, it’s the best thing yet.

    • #53379
      Profile photo of canope
      canope
      Participant

      pdonovan, are you in the US? If so, could you please tell me the name of the site in Belgium where you ordered the Cefaly? I have been trying to find a company outside the US that will ship a 3-setting Cefaly to me, but no one will ship to the US.

    • #54180
      Profile photo of Pat
      pdonovan
      Participant

      I don’t have the European model. They would not send it to me because the FDA has only approved the one mode unit, and I had to send them a prescription. When I asked them, they insisted the USA unit was best anyhow. I don’t know whether this is true or not, but I really like my unit.

    • #57399
      Profile photo of Don Allen
      donaldsallen
      Participant

      The 3-setting (non-US) version of Cefaly is available for $300 on Costco’s canadian website, (costco.ca). I used the website canadianaddress.ca to set up a shipping address for costco.ca to use. Website canadianaddress.ca is in the business of forwarding packages to the US. It worked great. The costs were $300+tax from costco.ca, $20 to join canadianaddress.ca, $10 for their labor cost to reship, $26 in shipping from Canada to US. The $356 is less than the total cost of buying limited function US model and you get the 3-setting model. You also qualify for Costco’s no questions asked return policy.

      You can use your US billing address for costco.ca. You have to have a Canadian ship to address, which is available as described above.

      I am still trialing the Cefaly so no conclusions yet. I do use all 3 settings. The device does numb migraine pain on a temporary basis. I have chronic/continuous migraine pain associated with Trigeminal Neuralgia. Your mileage may vary.

    • #57447

      iamladydi
      Participant

      Donaldsallen,
      Or anyone who would know the answer. I just read this post yesterday on how to acquire the 3 setting model. I just checked my back records and I purchased it exactly 60 days ago! So if I want to return it and get the 3 setting oneida HAVE to do it today! My question; if I return it to Cefaly US saying it did not work for me, would that make it difficult to acquire one through the above mentioned Chanel?
      Thanks for your speedy replies!

    • #57454
      Profile photo of Don Allen
      donaldsallen
      Participant

      The key point is that if you need/want to return the US model you must do so immediately.

      I see no complication with doing the legitimate return and purchasing a non-USA model through legitimate channels, (costco.ca). Of course, there are no guarantees.

      I had no difficulties with my purchase through costco.ca, but it did take about two weeks to complete.

      Good luck to you.

    • #57457

      iamladydi
      Participant

      Thank you!

    • #57762
      Profile photo of canopener
      canopener
      Participant

      My experience with it, for what it’s worth…

      I’m in the US, and I bought the 3-setting model with the help of a friend in the UK. I bought it through the Amazon UK Web site, had it shipped to her, then she sent it to me and I reimbursed her shipping cost. If I knew someone in Canada it probably would have been cheaper, but I don’t.

      It didn’t work for me. In fact, in at least one instance it gave me a migraine. In short, it was a waste of a lot of money. Details…

      – I can’t tolerate the full strength on any setting – I have to abort the escalation after about 5 minutes. The one time I didn’t it gave me a dreadful migraine.

      – The “relaxation” setting puts me to sleep, which might be a nice cure for insomnia except it beeps loudly when it’s done, waking me up.

      – The treatment setting does not take away my migraines. The alternate stimulation distracts me while it’s happening, but when it’s done, I still have a migraine and need my meds.

      – The prevention setting does not prevent my migraines. Perhaps it’s because I have to stop the escalation after 5 minutes or it gives me a migraine. (This was so even after several weeks – I could not get used to it.)

      I wanted this to work for me very badly, but it didn’t.

      Today is Day 4 of a migraine. I’ve been able to make it go away for a while with meds, but it comes back. I’m sick of it. I had been taking various preventatives (Magnesium+Calcium, Vitamin B2+other Bs, Butterbur+Feverfew, Topomax), and I slacked off. It’s not good to take Fiorinal with Codeine and Imitrex every day. I’ve only needed this once a day in the morning, but it’s still too much.

  • #43053
    Profile photo of Teania
    Teania
    Participant

    What is this device?

  • #43054
    Profile photo of Ellen Schnakenberg
    Ellen Schnakenberg
    Participant

    Teania – The Cefaly device delivers electrostimulation to branches of the supraorbital trigeminal nerves. These are nerves that are above the eyebrows etc. Right now it is awaiting FDA approval and it is unknown if it will be OTC or prescription, however my gut feeling is that it will be prescription, as there is another somewhat similar device called the Alphastim that is available here in the US but only under prescription. I am working on posts about each of these, but research is tedious, so it might be a while before I am able to publish anything helpful. I want to be sure I really understand how it works before starting an in-depth conversation about it.

  • #43683
    Profile photo of
    Anonymous

    Hi — Since we’re all so different, has there been any legitimate study performed to test the percentage of migraineurs who benefitted in any way from the Cefaly device?

    How safe is this device? Although many drugs taken for hopeful migraine prevention have side effects, I get very concerned when I think this device will directly impact nerves in my brain. Is there any potential that it would change the way our brain nervous system works and, if it doesn’t work and we stop using it, will our nerves actually “need” the unnatural stimulation or be otherwise altered permanently in a way to worsen our migraines, depression or anxiety? I mention depression and anxiety because I believe the Cefaly device manufacturer says it can address those issues as well.

    If you had to choose between Cefaly and Botox, which would you choose? Botox works for so many, but I had four treatments that never improved, but seemed to worsen, my migraines; however, I always wonder if it had to do with the time period in my life when it was given (pre- or post hysterectomy, winter versus hot and humid summers) or other factors? I don’t want to try additional drugs at this time after 15+ years of preventives under the care of a renowned migraine specialist … and also because I have an unrelated prior diagnosis requiring its own med and I don’t want interference with that medical condition or the med I take for it.

    FYI, I’ve tried all complimentary therapies as well, including several acupuncture treatments, to no avail. So, would you try Botox (again), Cefaly or ?? Insurance covers my Botox, but I’d try Cefaly if I knew it was safe and there was some safety info.

    Any thoughts? Thanks.

  • #43685
    Profile photo of
    Anonymous

    Please ignore the “P.S.” below, as I found the avatar instructions. Thanks.

    >> P.S. I hate to post it here, but I can’t seem to find info on how I can add an avatar on this site? Thank you.

  • #43716
    Profile photo of Ellen Schnakenberg
    Ellen Schnakenberg
    Participant

    It’s vital to understand that what is helpful for one will not help another. It’s good to see others talking about their experiences with Cefaly, but to condemn any treatment for everyone else without testing etc is not helpful either.

    There are many electric=type devices that are beginning to be studied and used for various conditions including chronic pain issues and Migraine. Of course they won’t work on everybody, but it has to be up to each individual person what they want to do.

    Marlene, I so wish this had been helpful for you. That is so very discouraging.
    Remember that you have tried several meds that didn’t help you but are effective for other patients.

    LillyP – Migraine is likely multi-factorial and that it even may take combinations of treatments for some patients to see results. Remember never to change your current protocol without consulting your doctor first. Okay?

  • #43731
    Profile photo of Tim Banish
    timbanish
    Participant

    This device sounds scary to me. Not sure how/where it attaches but as a retired therapist I have used almost every type of electrostimulation device available. With any training I took for electrostimulation devices the biggest warning was never do any stim above the neck, so it’s scary to think of doing stim to the supraorbital trigeminal nerves. Too much electrical current around the brain can cause serious problems.

  • #43745
    Profile photo of
    Anonymous

    Thanks to all for your input on this device. I know everyone responds differently to specific treatments, and I have so many triggers I was never assuming any singular regimen would have a significant impact.

    The Cefaly device was simply offered as a possible option by my migraine specialist (one of a few we recently discussed), but my migraine specialist did concede the response rates at any level were very low (and for those few who did respond, not much improvement). Frankly, I was asking more to rule it out, as the idea of it is one that (in my personal opinion) is too invasive without significant response.

    I’ve seen my migraine specialist for over 15 years and, although I’ve had intractable migraines for years, we’re still as diligent as ever. My best response to date has cone from managing the triggers I can diligently. My migraine care is also overseen by my GP and another specialist (chronic health concern) at the same hospital to make sure everything “works together.” I always ask for their input and respect all my physicians. I still do my own research, however, have Google alerts, follow this site, as well as a list of respected Twitter migraine-related accounts.

    At this point, I’m continuing my med regimen and targeting each of my triggers and medicating migraines no more than three times a week. Unfortunately, summer heat and storms are a major trigger. Another option by my neuro was also to try Botox again. My only concern is how that might possibly affect my other significant (although unrelated) health issue, which is currently under control. All the physicians and pharmacists I’ve asked say Botox is fine for me, but I still have my concerns as I never had Botox after my other health issue; only several trials before.

    Thanks, everyone! Hope you have many migraine-free days.

  • #43803

    Dr Whyte
    Participant

    I did not see it at the Headache Congress last month. One would think that if it worked, they would advertise. Maybe I missed it?

  • #43814

    ottermacailein
    Participant

    It’s not approved in the U.S. yet, so maybe that’s why it wasn’t represented there.

  • #43817
    Profile photo of Ellen Schnakenberg
    Ellen Schnakenberg
    Participant

    ottermacailein – I believe that was the case. I must say however, this year was International, and there were some devices available to look at and get more information about that are not currently available in the US.

  • #46794

    larissataurins
    Participant

    I have the Cefaly device (I live in Canada) and use it semi-regularly, but not enough to consider it a preventative. I find that I if I have a severe migraine it helps with the pain, maybe just as a distraction. It kind of feels like an odd forehead massage. Definitely not a miracle product, but I use it as part of my migraine toolkit.

  • #48037
    Profile photo of Du
    Duwayne
    Participant

    I am buying one. Not sure how to get one in the states but I will find a way. Drugs and drugs and drugs. Botox x5. Acupuncture did more than any other treatment. I know tens technology works. So I have nothing left to loose. I will let others know the results.

  • #48043
    Profile photo of Du
    Duwayne
    Participant

    I am out of town fo the next 3weeks. I will send you some email coorespondence, but won’t purchase until back home.

  • #48473

    janeenmills
    Participant

    How much are you selling it for?

  • #48529
    Profile photo of Bonnie
    bkacz
    Participant

    I would like to try the Cefaly also, I would appreciate any advice to getting one in the US.

  • #48887
    Profile photo of Lala
    mijon01
    Participant

    As soon as I found out it was FDA approved in the US I asked my Neurologist for a prescription so I can order it direct from Cefaly (my insurance won’t cover it). It is $349.00 with shipping and handling including (3) electrodes. I’m hoping to get the scrip soon so I can order ASAP. I will keep you posted on my results. I’m getting migraines 3-5 days a week. I’ve been on Maxalt for years and no preventatives work for me. Botox injections did not work either. Wish me luck!

  • #48963
    Profile photo of MaFixIt
    mafixit
    Participant

    I ordered one of these on Friday on the advice of my Mayo headache neurologist.

    I have DAILY headaches and have had them for about 2-1/2 years now. No medication has ever helped – in fact, many make my headaches worse.

    I will try this device and post how it has worked for me.

    I ordered from Canada without a prescription.

    Karen from Arizona

    • #49093
      Profile photo of Award00
      Award00
      Participant

      Mafixit – what website did you order from? I really want the one with the three settings.

      Thanks

    • #49096
      Profile photo of MaFixIt
      mafixit
      Participant

      I ordered from Roxon. I can’t find out how, though. Somehow I managed to get it ordered on my smartphone. They confirmed my order but said it won’t ship for at least 4 weeks.

      My neuro gave me two web sites. One was out of stock and the other worked and allowed me to order. It was $324 with an extra pack of electrodes.

      Karen from Arizona

    • #49098
      Profile photo of MaFixIt
      mafixit
      Participant

      Found a place for you – just go right to Cefaly’s website. It’s $295 but you have to email them a prescription for it from your doctor.

      Karen from Arizona

  • #49110
    Profile photo of Kerrie Smyres
    Kerrie Smyres
    Moderator

    To get one with the three settings, you need to order it from outside the U.S. Roxon is the Canadian distributor. You could order from them before it was for sale in the U.S., but I’m not sure if you still can. If you know someone in Europe, Canada or Australia, you could have it delivered to them and have them send it to you. That’s how I got mine. It is available at Costco Canada for less than any of the official distributors are selling it for.

    Kerrie

  • #49425
    Profile photo of Kerrie Smyres
    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.

    • #49430
      Profile photo of MaFixIt
      mafixit
      Participant

      Interestingly enough, I had ordered from Roxon.ca somehow using my phone. Then I was told by Cefaly that Roxon could not ship to me and that I had to order from them (the US link). So I did, and canceled my CC payment to Roxon. Then I got a nasty email from Roxon asking why I canceled? I told them why (that Cefaly said they were not allowed to ship to the US), but then he (Roxon) emailed me back and said he had the device to ship, so he could ship or continue with the cancellation.

      I told him to cancel since I paid Cefaly already and got 6 months to pay through PayPal. However, I have emailed Cefaly several times about the status of my order and they won’t respond, so I may have ruined it for myself. It’s possible I could have had my device this week.

      Karen from Arizona

  • #49437
    Profile photo of Lala
    mijon01
    Participant

    I ordered my unit directly off the Cefaly site with a prescription about 2 weeks ago and I just got tracking info today. I have followed up with them via email repeatedly and even went as far as calling Belgium to ensure that it was really shipping. Something about ordering via paypal out if country left me feeling uneasy. They seem to be responsive. I won’t feel at ease until I can actually track the shipment and have it in my hands. I live in Calif and needed a prescription. I will post as soon as I get it. I guess being in the US we’re limited to the single setting. Anyone know why?

    • #49467
      Profile photo of Kerrie Smyres
      Kerrie Smyres
      Moderator

      mijono1,

      The FDA has only approved Cefaly for migraine prevention, so the one sold here only has the preventive setting (setting 2 on devices sold outside the US). The other settings are abortive (setting 1) and relaxation (setting 3).

      Edited: Post originally said abortive was setting 3 and relaxation was setting 1. Thanks to bkacz for pointing out my mistake.

    • #49475
      Profile photo of Bonnie
      bkacz
      Participant

      My instructions say 3 is the relaxation setting and 1 is to relieve a headache.

    • #49477
      Profile photo of Kerrie Smyres
      Kerrie Smyres
      Moderator

      You’re right. Thanks for correcting my mistake.

  • #49576
    Profile photo of chirple
    chirple
    Participant

    I ordered mine from Cefaly directly (with Paypal, which did feel a bit shady). It was supposed to be delivered tomorrow, but I received this info in tracking:

    “UPS is processing shipment for future submission to the Food/Drug Admin and/or dept of AG PPQ.”

    Yikes! So it’s getting held up by the FDA for some reason, on its way to California. Has anyone else experienced this? Has anyone else who’s purchased one in the US actually RECEIVED it? I can’t find anything online about people in the US buying and receiving them.

  • #49581
    Profile photo of Lala
    mijon01
    Participant

    Hi chirple, I’m in Calif as well and was supposed to have mine delivered yesterday. I keep checking the tracking # on UPS and the info you have associated with your tracking is the same exact thing I show on mine. I imagine once the paperwork clears with customs, we will both be receiving our units on or about the same time. Hopefully that will be soon!!!

    • #52180
      Profile photo of Pat
      pdonovan
      Participant

      Yes, I had same experience. I followed shipment from Belgium to the US which was speedy. Then it hit US customs and was routed all around and I received notices that it was sitting in various UPS facilities waiting for customs. Since the prescription was pasted on box for them to read, It seems that our customs and FDA are to blame for all the delays.

  • #49582
    Profile photo of Lala
    mijon01
    Participant

    Hi chirple, I’m in Calif as well and was supposed to have mine delivered yesterday. I keep checking the tracking # on UPS and the info you have associated with your tracking is the same exact thing I show on mine. I imagine once the paperwork clears with customs, we will both be receiving our units on or about the same time. Hopefully that will be soon!!!

  • #49583
    Profile photo of Lala
    mijon01
    Participant

    Hi Karen,

    Sorry to hear you’re not getting a response from Cefaly. I email them daily…sometimes twice because I was always unsure about ordering outside of the country. I use one or both of these email addresses info@stx-med.com; info@cefaly.com and I always get a response the next day. The time difference will usually cause a delay in response. I find if I send them an email in the morning or early afternoon that I can get a response first thing the next day. I even called them once around 5am my time to follow up and they responded back via email shortly after that. Good luck!

  • #49602
    Profile photo of chirple
    chirple
    Participant

    After mine was seized in transit by the FDA yesterday, I wrote the company. Here’s what they had to say:

    “That’s the normal procedure for Rx medical devices importation in the US. All documents are review and control by FDA and that can take 2 weeks.”

    Wouldn’t that be nice if they let us know before paying hundreds of dollars for a device, and then sending us a tracking number that implies delivery in 2 days?

  • #49605
    Profile photo of Kerrie Smyres
    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.

  • #49672
    Profile photo of MaFixIt
    mafixit
    Participant

    My Cefaly came in today. I will start using it for prevention tomorrow and keep you guys up to date.

    Karen from Arizona

  • #49975
    Profile photo of IHaveAHeadache
    IHaveAHeadache
    Participant

    I think this is worth a try for me. I find it helps pushing on my forehead or wearing a sleep mask really tight. So, it sounds like I am already doing something similar on my own, not having known why. Even if it cuts down the frequency a little bit, it would be a blessing. Headaches 5-6 days a week is just miserable.

  • #49984
    Profile photo of Howard Fites
    HFites
    Participant

    I’ve had mine a week, got it on right now. It’s the US version and it has made a remarkable difference for me. The first couple days were mixed but after that I have been off Imitrex and have had no migraines. I can’t recall the last time I’ve gone two days without a migraine and now I’ve had four straight days. Another side benefit is that I’m sleeping much better as well. In addition to migraines I have PTSD so I’m very sensitive to stress and don’t sleep deeply. I’m very encouraged.

  • #49987
    Profile photo of chirple
    chirple
    Participant

    I received mine about 5 days ago (US version), and I’ve been using it every night. I haven’t had a migraine yet, but I only get 1-3 a month so that’s not unusual. I haven’t felt like I MIGHT be getting a migraine, though, which is pretty nice! The Cefaly itself feels WEIRD AS HECK (it feels like my eyebrows are tingling, and then like my BRAIN IS ITCHING). Ha. Hopefully it’ll work!!

  • #50104
    Profile photo of gahgahgah
    gahgahgah
    Participant

    My Kaiser physician is refusing to write me a prescription for it….says she’s “unsure about safety.” Any advice from anyone (I’m in Oregon)? Any way to get one without a “prescription?”

    • #50110
      Profile photo of chirple
      chirple
      Participant

      I just sent research links + FDA information to my Kaiser doctor, and she wrote me a prescription letter for it.

    • #50131
      Profile photo of Howard Fites
      HFites
      Participant

      I am also a Kaiser member (Southern California) and my doctor gave me one based on just an email message. It sounds to me your doctor is less then sensitive to your needs. If I was in your position I’d change doctors (and state why) or use an outside doctor just for the prescription.

      I’ve had mine for a week now and frankly it’s been remarkable. I had one migraine the day it arrived and none since. In a normal week I would have 5-6 days with a migraine of some degree. I also had a major over dependence on Imitrex and I have not taken any since I started using the device. A major plus is I’m sleeping so much better.

      I have no idea if it will help all but I can say it does work for me.

    • #50143
      Profile photo of gahgahgah
      gahgahgah
      Participant

      I’ll try to find a non Kaiser doctor. Thanks.

  • #50107
    Profile photo of Bonnie
    bkacz
    Participant

    gahgahgah – I asked my MD who originally diagnosed the migraines for a prescription but she turned me down because she didn’t know anything about it. I had an appointment later that week with a retinal surgeon for a follow up checkup. I asked her about it because I wanted to make sure it was safe for my eyes/retina. She said it was safe and wrote me a prescription. The only way I know of getting it without a prescription would be to get one used, or ask someone outside of the country to buy one and send it to you. I don’t know how strict they are about that.

  • #50134
    Profile photo of MaFixIt
    mafixit
    Participant

    I am using mine, Day 6 now, and can’t say I am having that much luck. But then again, I didn’t think my daily headaches were really migraines. I woke up at 2:30 a.m. last night with a bad headache and decided to take to ibuprofen and use the device. The headache toned down, but only to a level 5 and then was horrible all morning.

    I will continue to use it because they say results take a month or so. I know that when I put it on, the pain is causes is where some of my headaches are – it makes them worse at first.

    Karen from Arizona

    • #50137
      Profile photo of Howard Fites
      HFites
      Participant

      Have you used the Triptans when you have a headache? My doctor said it was the only way he could be definitive about diagnosing migraines. If it works you HAVE migraines, if it doesn’t work you may or may not have migraines.

      I used Imitrex for years and it was great but I over used them (daily) and needed a way to get off the drug. That’s why I went with Cefaly and so far so good.

  • #50140
    Profile photo of gahgahgah
    gahgahgah
    Participant

    Does anyone know of a **non-Kaiser** doctor in the Portland OR area who would prescribe Cefaly?
    Thanks.

    • #50146
      Profile photo of Howard Fites
      HFites
      Participant

      Portland has a number of doctor groups, Family Medical Group, Pacific Medical Group, Providence Medical Group and others. Call and tell them why you need a doctor, some may say no but I would not be at all surprised that you would find one who will see you. They are sensitive to “doctor shopping” but that would not be the case for this device. Be honest about your Kaiser problem, they’ll understand. Be prepared to pay for a office visit and bring information on Cefaly including the FDA approval reports.

      The other option is seeing a Neurologist. You might even try that in the Kaiser system. They would be far more likely to hear you out. If you push Kaiser you can often get what you want.

      Good luck.

  • #50500
    Profile photo of ADiaz
    Edge310
    Participant

    Any one out there willing to sell??? PM me

  • #50506
    Profile photo of Mike
    mike5215
    Participant

    I’m a 52 year old male and I suffer from chronic daily migraines and have taken an obscene amount of Sumatriptan over the past ten years, usually 300mg a day. I get the pills from overseas at around $1.50 a pill. As a case study I can tell you that apparently you can safely take as much Sumatriptan as you need, as often as you need it. I get regular physicals and blood work ups and I’ve never had any health issues, although the dosing terrifies my MD. I can also tell you that the generic stuff sold in Asia and Europe works fine and costs very little, and won’t kill you or poison you.

    Mostly to make my MD feel better I suggested we try the Cefaly and she was on board. I’ve had mine two weeks. Just lately I’ve noticed a change. When I first did a treatment, the sensation was very coarse and sporadic feeling, like the nerves were pushing back. It was also mildly painful. Now the sensation if very smooth and refined. I typically take Sumatriptan late morning, a couple of hours after lunch and at bedtime (blood sugar spikes seem to be a trigger)

    Lately I’m not getting the pre-headache signs as often and I’ve gone several days skipping one or two doses. It’s not a conscious thing…I’ll just realize I didn’t need the meds later in the day.

    The manufacturer claims with regular daily use the affected nerves become desensitized, ultimately resulting in fewer headache events, and I’d say based on my experience it’s trending in that direction.

  • #50581
    Profile photo of Angie
    Angiebecher
    Participant

    I’m new to the forum. It’s nice to be able to read about other peoples experiences. I’m 42 years old and I’ve had migraines for about 12 years. Over the past couple of years they are more frequent. I get between 5 and 10 migraines per month and they usually cluster together.

    I’ve been taking Imitrex and it works well to get rid of my migraines mostly but I don’t like the “yucky” feeling I get when I take it. It also makes me nervous when I take more than 3 or 4 in a week. So when I heard about the cefaly device I was intrigued.

    I went to my neurologist and got a prescription. I received my device (US) yesterday. I’ve been having migraines daily for the past few says and I was nervous to try the device with a headache but I did it this afternoon. So far so good.

    It feels very strange. It is mostly a tingly feeling and it’s like a really intense head massage. I may have placed the electrode a bit low because my eyes were tingling a little too. I had to hit the button to stop increasing intensity after about 10 minutes. Then it just continued. After a bit if felt like it was rotating intensity and direction a little. Did anyone else notice that? I felt ok during the session. After it stopped my head felt sort of numb. It did not make my headache worse and may have even calmed it a bit.

    Overall I’m hopeful that this device can lessen the frequency if my migraines. I will keep you posted.

    Also, for anyone who has the non US version with 3 settings – what’s the difference between the preventative setting vs the abortive session? Is it less intense? Does it rotate intensity differently? I’m curious how the abortive might work.

    Thanks!

  • #50584
    Profile photo of chirple
    chirple
    Participant

    I finally received mine (US) and have been using it for about 20 days now. It was too intense the first few days, but now it’s totally normal. The way it makes my eyebrows feel like they’re twitching NEVER gets old, though (yikes). I keep describing it as “it makes my brain itch”.

    I had a migraine at day 17. I usually get 1-2 migraines a month (up to 3-4, or as few as one every 4-5 weeks, depending on hormones/stress/etc). So about normal, I think, but I feel like I’m having fewer days when I feel like I MIGHT get a migraine (or just generally feel crummy).

    The electrodes are supposed to last about 20 days, mine seems to be still going strong. I take REALLY good care of it– I gently peel it off the strip, and then put it back on right away. I re-seal it in the metallic pouch it came in, and then in a plastic bag that has a cotton ball moistened with witch hazel on it. I’m always sure to clean my forehead of all makeup, and swab it with witch hazel before putting on the electrode.

  • #50593
    Profile photo of lisa_stam
    lisastam67
    Participant

    My name is Lisa and I have had migraines for 35 years – ever since I was 11 years old – and they have gotten worse as I have gotten older. In the past 1-1/2 yrs., I have had occipital nerve injections and 2 rounds of Botox injections, all of which did nothing but produce more pain. I currently take Topamax as a preventive, and have: Maxalt, Fioricet, Migranal, Sprix and Zipsor at the ready for one of my 7-9 migraines per month. I would love nothing more than to try something that is non-medicinal that could possibly help. Because the severity and frequency of these migraines, and the fact I had what is considered a “failed back surgery” about 5 years ago (which I also have to take pain meds for), I am unable to work and am considered legally disabled. Not the kind of life I thought I would have at 46 y.o. If this Cefaly device could improve my headaches enough to allow me to drop back on even one med, I would feel like I’d won the lottery!

    My neurologist just mentioned it to me at my appt. last Monday and suggested I order thru Canada as my insurance probably won’t cover it. Is this what everyone else is finding as well?

    • #50599
      Profile photo of Angie
      Angiebecher
      Participant

      Hi Lisa. I’m so sorry you have gone through all of that. Makes me grateful for only having an abersgr Of 5-6 per month.

      I ordered from cefaly.us. I got my prescription and scanned it and emailed it to the us cefaly company. The. Placed my order on cefaly.com US. I think it was $295 plus shipping and electrodes it was close to $400. It arrived within 3 weeks. I hope you can try it and that it works well for you. Good luck.
      -Angie

  • #50596
    Profile photo of Bonnie
    bkacz
    Participant

    Just an update. I just had a migraine Thursday but went 20 days without one before that. It’s a record for me. I use the Cefaly every night before bed.

  • #50653
    Profile photo of Lizzie
    lblack75
    Participant

    Hi there, I posted in the other thread about cefaly in complementary therapies as well. I’m in Canada, and have had my cefaly for about one year (purchased through costco). I haven’t used it preventatively, but use it during an attack. It doesn’t take my migraine away, but does block or dull the pain which is a nice relief in the middle of a three-day migraine. this allows me to relax and sleep. This really has been helpful over the past year as I have been nursing my baby and unable to take a lot of my regular migraine meds. The sensation was really uncomfortable at first, but now I’ve gotten used to it and find it ok.
    Lizzie

  • #50722
    Profile photo of BayouTigress
    BayouTigress
    Participant

    Lol, I just found out that the Cefaly device is being discussed in 2 places on this forum. I started discussing my experience in the Alternative Medicine section. I just received mine yesterday and have only used it once. I have migraines 21 of 30 days a month. I have tried all sorts of preventatives, food sensitivities, and am currently on Depo Provaria (sp) for hormone control. So this device is the first hope I have had in a while. It does feel really weird.

  • #51034
    Profile photo of Howard Fites
    HFites
    Participant

    One Month on Cefaly

    Today is the one month anniversary of getting my Cefaly device. I use it every day at the same time just prior to bed. I have the US version of the device. So here are my results so far;

    1) My migraines and use of Imitrex has dropped from an average of 20 per month to four.
    2) Sleep has improved
    3) It’s now clear that the remainder of my migraines are triggered by weather changes. Every migraine I have had this month has been related to a major shift in the weather.
    4) I didn’t like Imitrex before, now I just hate the effect it has on me. What was acceptable a month ago has me reeling now.

    So that’s it. Overall it’s been a good investment and my general health is much better.

    • #51061
      Profile photo of BayouTigress
      BayouTigress
      Participant

      Hi aha fitness, so glad to hear Cefaly is working for you. I have been using mine just over. Week and no improvement yet. In fact I may be a little worse.

  • #51088
    Profile photo of MaFixIt
    mafixit
    Participant

    I am one month into using my Cefaly. I have gotten used to it and can use it the whole 20 minutes without stopping. I don’t really think I am feeling any benefit. I will give it another 30 days and then take advantage of the money back guarantee or sell it to someone else to try.

    I used as directed, only missing 3 days out of 30. I use it 20 minutes every day for preventative. My headaches are so all over the place. I think many of my headaches come from sub-occipital nerve issues.

    Karen from Arizona

  • #51151
    Profile photo of Listkeeper
    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 day now. I’ll keep you posted

    Vin

    • #51157
      Profile photo of Bonnie
      bkacz
      Participant

      Interesting Listkeeper, I didn’t read to use it twice a day.

    • #51172
      Profile photo of lisa_stam
      lisastam67
      Participant

      That would be great. I am still on the fence about purchasing it as it is a lot of money for us at this time – we have a lot of sudden, unexpected, expensive household expenses – and we really can’t afford to invest that much money into something that probably won’t work.

      Thank you and feel better,

      Lisa

  • #51547
    Profile photo of Howard Fites
    HFites
    Participant

    Cost saving tip.

    I ordered a tube of GelTac online to see if I could use get longer life from the Cefaly electrodes. The company says they should last 20 uses but mine loose tac after about 10 uses. I tried the GelTac and it brought them back to life and they worked just like new. You have to apply the gel and leave them out for a few hours to dry first. Don’t cross the gel over the center strip (white) on the electrode. That’s how the original adhesive was applied.

    At $300 for the device any savings is a plus.

    • #51550
      Profile photo of chirple
      chirple
      Participant

      GelTac? It appears to be a lubricant that’s recommended for forklifts?

      Perhaps you mean Tac Gel, which is available on Amazon (I just searched, thanks for the tip re: the gel, I’d been meaning to do that). I looked, but the stuff from Parker Labs actually had better reviews, so I got some of that via amazon prime. Looking forward to re-hydrating the first pad that I’ve gone through so far!

      (General update while I’m here: I’ve been using the Cefaly for about a month and a half. Not much difference in my migraine count, but I only get 1-3 a month anyway. There has been a difference in the days when I feel I MIGHT get a migraine though, those are going down!)

    • #51556
      Profile photo of Howard Fites
      HFites
      Participant

      Sorry I should never do anything from memory. Yes Tac Gel.

      My migraine count is down by 75% but I get about 20 a month. The best benefit is I’m no longer hooked on Imitrex which I really hated using.

  • #51772
    Profile photo of Ellen Schnakenberg
    Ellen Schnakenberg
    Participant

    WARNING to all posting about Cefaly: It is illegal to buy or sell prescription devices without a license. Buying or selling any items on our site is strictly against our terms of service, and those who engage in this activity will have their posts moderated, and at its worst, risk being permanently removed.

    Migraine.com is a safe haven for our members, and moderators work diligently to maintain that safety and security. Please contact a moderator or Migraine.com staff if you find someone has broken the trust of the community by violating our terms of service in any way.

    Otherwise…

    Keep up the good conversation!! :D

    ~Ellen

  • #51871

    iamladydi
    Participant

    Hi,
    I hope Hfites or JSpencer or somebody is still keeping a watch on this forum. I’ll just condense my history of 26 years of Migraines with Chronic Daily Migraines for close to 20. I just discovered this information the other day and had not heard of this device at all. I believe that the good has out-weighed the bad on what I have read here but my husband is constantly discouraged and I’ve heard so many times “Why do all these things work for other people and not for you?” We checked into the Occipital Neural Stimulator but was quickly turned down by insurance. We could have appealed but from what all I was reading on a support group I thought, “I’ve had enough pain and problems, I don’t need multiple surgeries because things go wrong!”

    But, to get to my questions, I read so many of you saying that it is uncomfortable at first, some saying it is painful at first but you adjust to it. I have a problem with getting a migraine anytime anything touches my head! I’ve often wondered if there are other people like this? I wear light weight frameless reading glasses and keep them pretty loose. I have another condition that tires me out easily and I almost always need an afternoon nap. But the moment I lay down I get a headache. If I turn over it moves to that side. Lay on my back, ditto. Also anything rhythmic tends to bring on the migraine and nausea. So taking all that into consideration, do those of you that have the Cefaly feel that I could still benefit from it or do you think I would not be a good candidate? I tend to think “What have I got to lose but $400?” because I tried everything except acupuncture so I don’t have many choices left. But if I get it cannot even tolerate it from day one; bad move, I guess.

    The other question is, what does this thing look like and how does it attach to your head? I’ve not seen any comments about that.

    Thank you and God Bless you all for just making it through this nightmare disease a day at a time. Much to difficult for anyone else to understand except another migraineur.

    • #51895
      Profile photo of Ellen Schnakenberg
      Ellen Schnakenberg
      Participant

      iamladydi,

      The device looks like the Wonder Woman crown from the comic book and television series of the 1970’s, just smaller and white, lol. You can google it and see exactly what it looks like.

      There are several things to talk about here, but the main concern I have is who you are seeing for your Migraines. It is actually physically impossible to give a complete trial to all the single medicines available to potentially help Migraine in less than 25 years. Add to that the fact that most patients who are chronic end up on multiple treatments to address their problems, and that adds many more years to the potentials. So, the first thing I want you to realize is that there is hope – I guarantee you have not tried everything. There are other treatments ranging from vitamins and IV therapy to herbs and exercise. Add those to the trial options, and again, you are adding years to try them all. The fact that your doctor hasn’t expressed this to you, or tried more options, tells me you might need a change of physician, and your best bet is probably going to be seeing a Migraine and headache specialist. Here are some links to help you find one near you, but keep in mind, you are a team with your doctor and you might need to try more than one to find the perfect teammate that works with your particular circumstance http://migraine.com/blog/looking-for-a-migraine-specialist/

      Please look at this link on central sensitization and allodynia and notice what it says about chronic Migraine. Please talk to your doctor about it and see if this might be part of your problem, as it is very common among those of us who have had chronic Migraine for a long time. http://migraine.com/blog/migraine-allodynia-and-central-sensitization/ My own specialist is trying a compounded cream to help with my allodynia. It has been so helpful for her patients pain, she uses it on her own family now. Adding another ingredient that I am unable to take, has been very helpful for some of her patients.

      As to your husband’s concern over treatment not working for you… you are NOT alone, and he should know that. Migraine is a multi-faceted problem that requires different treatments for different people. If there were one magical pill that worked, we’d all be using it! There are few targeted treatments, but more are on the way, because the drugs we have don’t work so well at all. Most of the treatments we use today were originally designed for some other diagnosis – they’re second-hand medicines! Here is a video quiz with some shocking statistics that you can show him, that might really make him understand how complicated this can be! http://facesofmigraine.com/

      ~Ellen Schnakenberg

    • #51937
      Profile photo of BayouTigress
      BayouTigress
      Participant

      One thing O have not seen others mention about the Cefaly device. The intensity ramps up and the down during the 20 minute session. The instructions say if it gets to intense, to punch the button one time, the device will hold at the current intensity until it is time to ramp the intensity down. So if you can stand the lower intensity level, you may be able to work your way through the entire program by stopping the intensity escalation at a little bit higher point every few days. Just a thought.

  • #51877
    Profile photo of MaFixIt
    mafixit
    Participant

    Iamladydi:

    You won’t lose $400. The company offers a 60 day money back guarantee. At least that is whay my invoice said.

    Karen from Arizona

  • #52096
    Profile photo of Monkeybrew
    monkeybrew
    Participant

    I’ve had my Cefaly for a a couple of months now and have not really noticed any difference in the migraines. To be fair I am just recently done with a methergine “holiday” (every six months one must come off methergine for thirty days in order to be tested for fibrous tumors). It is clear that the methergine was helping because going off of it for a month has been Hell. I am not sure the Cefaly’s effects can be accurately assessed because of this drug holiday.

    My plan is to continue using the Cefaly as I get back on methergine. I am still hopeful it may bring about some positive change.

    MB

  • #52174
    Profile photo of Delaney
    Delaney7
    Participant

    Hi folks,
    Just a bit of news on the availability of the Cefaly in Canada. It had been available on Costco’s website but sold out within a couple of days. I had emailed Costco and been told they were going to be getting it back in stock in 4-6 weeks, so had been checking daily (because it was $100 less than the MSRP and Costco has a 3-month warranty, as opposed to the manufacturer’s 30 days with 20% restocking fee.) I contacted Costco this week to check up and have been told that the item has been “discontinued” and that they won’t be selling it any more. :(

    I’ve ordered it from Roxon; the weather here has been terribly triggering and so I’ve been having an unusually high number of severe migraines. I will post about how it works for me once I receive it (hopefully I don’t have to wait the full 6 weeks!).

    Just wanted to let everyone know that they have discontinued it at Costco in case anyone else was planning on purchasing it there.

    Delaney from Alberta

  • #52177
    Profile photo of Pat
    pdonovan
    Participant

    First thing I’d comment on is to the person whose doctor wouldn’t give them a prescription. My doctor is considered the leading migraine specialist on the East coast and she was eager to give me a prescription saying that the science behind the Cefaly was sound. Of course it won’t work for everyone – depends what nerve is triggering the pain in your migraines.
    Second, I too, wanted the European model and asked the customer service person at cefaly.us if I could get this one. She was actually in Belgium. She said that the European model has gotten some untrue rumors from ? It was developed mainly as a demo so one of the settings was just for demo. The American version has the other 2 settings combined into what she and other migraneurs working at the company think superior – they all use the US model. And to the folks spending $400 for the thing – I paid $359 and that included an extra 3 (other than the 1 that comes with it) electrodes and postage. I received it in about a week. I scaned in my prescription and sent it by email. This is the best thing that’s happened to me for the past 30 years!

    • #54819
      Profile photo of canopener
      canopener
      Participant

      pdonovan wrote: “She said that the European model has gotten some untrue rumors from ? It was developed mainly as a demo so one of the settings was just for demo. The American version has the other 2 settings combined into what she and other migraneurs working at the company think superior – they all use the US model.”

      This is very different from the information given in other places. Every article I’ve read says that the FDA approved the Cefaly only for prevention, so the US model only has the prevention setting (#2 in the non-US model). I’m pretty sure Cefaly’s own Web site says that. Also, if the US model is superior, why is the other model sold in every other country in the world? This is easy to prove – just find the clinical trial info that led to FDA approval. I’m sure they tested the settings on the existing device, rather than create some new special setting for the US. I’m in a clinical trial for a new drug now, and that’s just not how they work.

      I suspect that the woman on the phone was just trying to make the 3-setting unit sound less desirable so you’d back off. I imagine they are pressured constantly from desperate migraine patients in the US.

  • #52183
    Profile photo of Ihateheadaches
    Lmorrisbal
    Participant

    Hi folks!
    I am a 56 year old male who has a headache EVERY SINGLE day! They started when I was 15 and I have tried everything but this devise. What is the best way to order and can you get it with the 3 settings or not? I do have a rx. Thanks

    • #52186
      Profile photo of BayouTigress
      BayouTigress
      Participant

      Best place to buy is straight from the manufacturer at

      http://www.cefaly.us/en/cefaly-shop

      My unit took two weeks to arrive, one to ship and one In transit. Most of the transit time was in US customs as others have said.

      Good luck. I hope it works for you.

  • #52372

    Dr Whyte
    Participant

    So here’s my early clinician’s experience with Cefaly.

    1. Chronic migraine — works great no headaches

    2. Chronic migraine (but with anxiety and fibromyalgia) — tried it twice but it hurt even at lowest settings. I may give her a “numbing cream” in the area of the pad but I haven’t decided yet

    3. New daily persistent headache with migraine features — saw him five minutes ago, no headaches at all.

    The American Headache Society meeting is next week so I’m sure Cefaly will be the talk of the town.

  • #52421
    Profile photo of MaFixIt
    mafixit
    Participant

    2 months in and it’s not working for me – but I always questioned the migraine diagnosis anyway. Not sure where to go next.

    I need someone who will dig deeper into these headaches and dizziness. Just not sure where to turn now.

    Karen from Arizona

    • #52444
      Profile photo of Linda
      search4u21959
      Participant

      mafixit:

      I too have had a headache for almost 4 years. I was wondering where do you experience the majority of them? I have never spoken to another person who had one daily and I have tried every migraine remedy and nothing has worked. My primary doctor does not believe they are migraine related but has sent me to several specialists who have done every test and tried many many meds. I too was thinking about trying the Cefaly but hate to spend a lot if it doesn’t work as I am on disability. Have you gotten any relief at all? Thanks

    • #52494
      Profile photo of MaFixIt
      mafixit
      Participant

      search4u,

      My headaches are all over the board. They can be in the back of my head at the base of my skull, in my forehead between my eyes, on both sides at my temples – there is no distinct pattern at all.

      I also have tried many, many headache remedies. They all make me feel worse and don’t take away the pain. They change my diagnosis as my headaches and symptoms change, from migraine (I believe the majority of my headaches are not migraine), occipital neuralgia, cervicogenic headaches, etc.

      I find that sometimes if I have one of my frontal headaches the Cefaly will tone it down, but I am not feeling any long term relief – I still have a headache every day. They come and go at will. No triggers that I can tell. I do everything I can to keep them under control, from Yoga to exercise to the Melt Method (foam roller), to meditation, to sleep, to being gluten free, to accupuncture, to chiropractor to Osteopathic manipulation. Nothing takes them away.

      I still have not given up the fight, though.

      Karen from Arizona

      <<I too have had a headache for almost 4 years. I was wondering where do you experience the majority of them? I have never spoken to another person who had one daily and I have tried every migraine remedy and nothing has worked. My primary doctor does not believe they are migraine related but has sent me to several specialists who have done every test and tried many many meds. I too was thinking about trying the Cefaly but hate to spend a lot if it doesn’t work as I am on disability. Have you gotten any relief at all? Thanks>>

    • #52506
      Profile photo of Linda
      search4u21959
      Participant

      Mine are mainly in my temples. I have even had a temporal artery biopsy. I was hoping you had some ideas. Mine are never gone. All day everyday. They said with my pain receptors being messed up because oft fibro that is why I get no relief with the meds especially pain meds. Good luck to you I hope you find some relief.

  • #52897
    Profile photo of Euromig
    Euromig
    Participant

    I’ve been researching this in the last few day and the Cefaly Europe website is offering a refund if it does not work. You buy the unit for 295 Euro for a 60 day trial – if it does not work you send it back and they refund less 49 Euro, Following comments in the forum I think that is a good offer.

  • #53121
    Profile photo of alibri1
    alibri1
    Participant

    Can anyone tell me how much discomfort you’ve experienced wearing the device? I have heard some people are unable to tolerate the electrical stimuli/pain. Please relpy. I would like to know before I buy it.

    • #53125
      Profile photo of MaFixIt
      mafixit
      Participant

      I can tell you that at first, it hurts. But you can push the button to stop the intensity from increasing. After a while you get used to it and can use it without pushing the button. It still hurts, but not enough for me to stop using it.

      Karen from Arizona

    • #53129
      Profile photo of BayouTigress
      BayouTigress
      Participant

      It is very uncomfortable to start. For me not so much pain as it just feels weird. But if you have much sensitivity to pain, this may not be for you.

  • #53122
    Profile photo of alibri1
    alibri1
    Participant

    Can anyone tell me how much discomfort you’ve experienced wearing the device? I have heard some people are unable to tolerate the electrical stimuli/pain. Please relpy. I would like to know before I buy it.

    • #53124
      Profile photo of Howard Fites
      HFites
      Participant

      alibri1 – Everyone has different levels of pain they can tolerate and some migraine sufferers are acutely sensitive to touch. That said, I found the Cefaly moderate to high in pain level when I first started using it but I quickly became accustomed. It’s been a number of months now and I look forward to my daily treatment which is now very relaxing sometimes to the point that I fall asleep with it on.

      I think the question you need to ask yourself is are you sensitive to touch when you have a migraine? If the answer is yes you may find the device more painful then the typical user.

      Good luck.

  • #54183

    iamladydi
    Participant

    Hi, I have my prescription but I’m wanting to at least try to approach my insurance company to convince them to pay part of it. I would like to have amunition ready to present to them. Does anyone know how to find the FDA approval letter or whatever it is that they issue? I emailed Cefaly and they sent me some numbers. I went to the FDA site and tried to search using those numbers but came up empty. Thank you!

  • #54215
    Profile photo of canope
    canope
    Participant

    I found a way to order the European version of the Cefaly, and I can’t wait to try it. I get way too many migraines, and very much would like to cut down on meds.

    • #54326

      iamladydi
      Participant

      Can you please share how to get that model?

  • #54239

    iamladydi
    Participant

    HFites..thank you for the link. Thanks also for all your contributions to this site, they are very helpful.
    Canopy…Will you please share the information you found?
    Moderator……Con you please explain why these posts do not follow in order by date? I have to scan all the messages to find the most recent. Also I receive emails with new posts, and the link to get here. Once I am here and have scrolled through looking for current date the post is not here.
    Someone mentioned a while back that there are two discussion boards going on here at the same time. What is the other one please? Oo I guess I should ask; how do I get to the other one?
    Thank you

  • #54784
    Profile photo of canopener
    canopener
    Participant

    Testing to see if my account works and I’m able to post before I write a long message – have been having problems.

    —-

    Edit: Hooray! It works. Okay, now can post real message…

  • #54791
    Profile photo of canopener
    canopener
    Participant

    I have some questions about the use of the Cefaly device. I have the 3-setting unit:

    1: Treatment (to take away a migraine)
    2: Prevention
    3: Relaxation

    The first time I used it, I put it on setting 3, and it was still so uncomfortable that I couldn’t stand it for more than a couple of minutes. The place where the electrode is placed felt like it was being rammed by a metal rod.

    The first time I stuck it out and let setting 3 run for the full 20 minutes (without stopping the escalation), it GAVE ME a migraine – bad one, too. After that I was scared to use it for a few days.

    I emailed Cefaly about this experience, and was told the sensations I was experiencing were normal, and to just stop the escalation after 5 minutes until I was more used to it. The next time I tried it, I again put it on setting 3 (lowest), stopped the escalation after 5 minutes, and let it run for the full 20 minutes. That was tolerable, and I fell dead asleep (which the manual warns may happen).

    But I have a question: Is the only difference between these 3 settings the amount of power, or is there a qualitative difference? In other words, is it just a matter of degree, or are these very different programs (different wave patterns or whatever)?

    This is important, because otherwise I don’t know how best to use the device. Should I use setting 3 until I can tolerate that, then setting 2, etc.? Or… if I want to prevent migraine, should I always use setting 2 and stop the escalation of setting 2 when it’s uncomfortable?

    I tried to ask this question of Cefaly, but they were so concerned about how I could seem to be in the US and yet have a 3-setting unit that this was all they could focus on, demanding to see my receipt, etc. So I gave up on them. Does anyone here know the answer – or maybe (if you are not in the US) you could ask them? Don’t ask any questions about the 3-setting unit going through their US Web site or they’ll have a conniption.

    The sensation is very weird and (at first) scary on setting 3, and that’s supposed to be the “easy” one, so I’ve been scared to try settings 1 or 2. Perhaps if I did, I’d instantly get my answer because they’d be so different.

    Others here who have used the Cefaly have posted about whether it helps their migraines or not. But no one has talked about the extremely weird sensation, how hard it is to tolerate, or whether it’s actually given them a migraine. Has anyone here actually done the full 20 minutes on setting 1 (or doubled it, as suggested) and had it take away a migraine?? Has anyone even been able to tolerate it at full power for that long??

    Thanks very much for any feedback or guidance you can give me.

    • #54796
      Profile photo of BayouTigress
      BayouTigress
      Participant

      My feedback may be limited for you since I have the US version, I have done multiple 20 minute sessions when I have a migraine. It helps but does not take it away. I used it regularly for a couple months with no definitive effect on my migraines, at least from a number of occurrences standpoint.it has never caused me to have a migraine.

    • #54810
      Profile photo of canopener
      canopener
      Participant

      It’s disappointing that it didn’t help you. I’ve noticed that it helps some but not others – might depend on the type of migraines you get. I’ve had it take away incipient migraines twice, so I’m hopeful. I’m not giving up yet (especially after what I spent for it).

      Did you find the sensation excruciating when you first did it? How long was it before you could tolerate full power escalation for 20 minutes?

      Maybe it’s just the setting 3 (“relaxation”) that I have a problem with. I really should try the other settings. Someone else posted that he didn’t like the sensation in one of the settings, so they don’t just differ in power, it’s the algorithm.

    • #54811
      Profile photo of BayouTigress
      BayouTigress
      Participant

      I have read somewhere, wish I could remember where, that it worked better on people who’s pain felt your head is in a vise vs people like me who feel like there is someone inside my head with a spear poking around. I did the full 20 minutes first time out of the box. To me the feeling was intense but not like the pain in a migraine so I could tolerate it. After using it for a month, the sensation was not bad at all, kinda relaxing. I have meds that work, Zomig, but can only take 9 a month. My headache days are over twice that frequent so I am willing to try anything on the days I can not take Zomig.

    • #54815
      Profile photo of canopener
      canopener
      Participant

      Thanks so much for your reply! My head definitely feels like it’s in a vice when I have a migraine – big time. So now I am very hopeful that the Cefaly will work for me! It’s very hard for me to tolerate the sensation and I have to fight a tendency to avoid it – I didn’t do it today. But now I feel more inspired and determined to give it a real try.

  • #54838
    Profile photo of canopener
    canopener
    Participant

    I think I’ve discovered why the FDA didn’t approve the Cefaly’s prevention setting. It’s not dangerous at all, but it doesn’t work. I woke up with a migraine this morning, and tried the Cefaly for an hour. No joy, and I may have ended up with a worse migraine because I delayed taking meds. I’ve now taken 50mg of Imitrex (hope that will be enough) and two Fiorinal with codeine, and I have an ice pack on my head. I hope that will do it.

    I did about 4 prevention sessions (setting 1) before this, allowing each to escalate more in power before I stopped the escalation. I let the last session escalate the whole way. Maybe it just needed more full power sessions to work. I’ll try again before I give up.

    I’m still hopeful the prevention setting will work.

  • #54839
    Profile photo of canopener
    canopener
    Participant

    How come when you post, it ends up in the middle of the thread instead of at the bottom? Can this be fixed? It’s very hard to find new posts.

    • #54893

      iamladydi
      Participant

      I don’t know why it is like that but its aggravating. The post just below says you can contact her (the moderator) if you’re having problems with the site.

  • #55019
    Profile photo of Dave-O
    Dave-O
    Participant

    Hi all, I’m a new member to this group. I’ve suffered from migraines for 45 years and cluster headaches for the last 30 years. I just finished a 6-month long CH cycle. After 6 months of CH’s I had given up hope that my CH cycle would end anytime soon. Then I received a Cefaly in late July and it has successfully ended this cluster cycle for me. Check it out at (www.Cefaly.us) – you’ll need a prescription for the medical device in the USA (not Canada). As you’ve probably read already, electrical impulses are produced, which act on the trigeminal nerve. In my case it halted the daily/nightly CH episodes in under a week.

    Cefaly has arrested my current CH cycle and quite honestly changed my outlook on life as I no longer dread the next cluster headache cycle. I use the word dread because my CH condition has regularly driven me into deep despair and depression. Cluster headaches are a particularly painful condition and have been described as follows “…The pain of CH is remarkably greater than in other headache conditions, including severe migraine. The term “headache” does not adequately convey the severity of the condition; the disease may be the most painful condition known to medical science…” see http://en.wikipedia.org/wiki/Cluster_headache).

    The device hasn’t been tested or approved for CH yet, and I hope it works for you as it did for me — I feel that this is as close to a CH ‘cure’ as I’ve found so far. I was an early and fast responder, but it doesn’t work for everyone and most people need to use it daily for a month before they see a benefit.

    The device worked for me in less than a week, but I may have been at the tail end of my CH cycle anyway so it nudged me over the top. During the first few days of me using the Cefaly, I did experience a couple cluster headaches/migraines and i did use the Cefaly during an attack along with Oxygen. For me i think the Cefaly helped arrest the CH/migraine episode but the major factor was likely the O2. Although I haven’t had a CH since late July, I keep using the device daily, which is the protocol for prophylaxis of migraine. I too think that it can help alleviate an on-going migraine episode and agree with the poster above who felt that using the device several times in a row might increase efficacy (i.e. running the 20-min program 2-4 times in sequence). I did use it twice a day (1st thing in morning, and an hour or two before bed) and thought that may have helped with efficacy and it might be why I responded in under a week.

    Any way, I’d suggest buying one of these things and giving it a whirl. What have you got to lose? I know it costs nearly $400 after shipping and an extra set of electrodes, but if you don’t like it sell it on eBay or Amazon or elsewhere. And I bet you’ll get pretty much close to what you paid for it since the demand for these devices is growing rapidly. BTW, I had heard about the Cefaly and tried to purchase one back in March when it was first approved and again in June but was unable to find one for purchase until July — it has become a very popular device in the USA and it seems inventories were depleted. You can order it from cefaly.us (US version with only one program setting vs EU version with three program settings and over-the-counter).

    I hope my story helps you find the relief you deserve…

    ~David
    San Francisco, CA

  • #55020
    Profile photo of Dave-O
    Dave-O
    Participant

    This is a follow up to my post just a few minutes ago. I forgot to mention that I too found the electrical stimulus too much the first time i used it and stopped it before it went to maximum. The second time I knew what to expect and didn’t find it difficult to let it go through the 20-min cycle up to full power. The company advises that you try to get to the max setting as that has the most data supporting efficacy. I agree and think that the amount of current sent to the nerves significantly impacts the down-regulatory effect on the pain signaling pathway.

    ~David
    San Francisco, CA

  • #48375
    Profile photo of Ellen Schnakenberg
    Ellen Schnakenberg
    Participant

    ottermacailein

    If you’re having trouble using the forum and sending messages, you can contact a moderator for help :)

    ~Ellen

  • #49432
    Profile photo of Bonnie
    bkacz
    Participant

    After a little over a week of using the Cefaly I can’t say for sure it is preventing migraines yet but I wouldn’t give it up for anything. This morning I woke up feeling a cold/flu/sore throat coming on. I was nauseous. I had a very bad headache radiating down my neck and shoulders, I’m not sure it was a migraine. I put the Cefaly on, I always use setting 1 so I’m glad I have the non US version. In 20 minutes the headache and pain in my neck and shoulders was completely gone and did not come back.

    I haven’t tried setting 3 yet but tried setting 2 and didn’t like the pulsating it does.

  • #49600

    ottermacailein
    Participant

    I’m glad to hear you are seeing some benefit from it. I hope it continues!

  • #54793
    Profile photo of canopener
    canopener
    Participant

    Aha! I think your post may answer one of my questions. I was curious whether the 3 settings were just different in magnitude, or qualitatively different. I’ve only tried setting 3 because I was scared to try the other 2.

    My post ended up in the middle of this page for some reason. This is the link:

    http://migraine.com/topic/cefaly-anti-migraine-device/#post-54791

    Could you give me some feedback, please?

  • #49578
    Profile photo of MaFixIt
    mafixit
    Participant

    My credit card was charged through Paypal and I received a confirmation of my order, however, I cannot get a response from Cefaly about delivery.

    Roxon tells me they are not taking orders from the US since the device is backordered 4-6 weeks.

    Wondering why I was charged if the item is not shipping? My credit card will protect me, so I am not worried, but I really want to try this device.

    My neuro had patients that used it. I should ask her how they received the device.

    Karen from Arizona

  • #49594
    Profile photo of MaFixIt
    mafixit
    Participant

    Just received a reply from Cefaly that my device has shipped and I should be received a tracking number shortly.

    Karen from Arizona

  • #50086
    Profile photo of JSpencer
    JSpencer
    Participant

    I am in the USA. I ordered the device directly from Cefaly. It arrived via UPS, and was held up for about five days due to some bureaucratic nonsense with FDA or customs. It is the device with the one setting (wish I had known about the three setting device before I ordered this one!).

    I have used it once a day for four days, and am, thus far, experiencing some interesting results.

    I should give you some background. I am a 61 yr old male. I have had migraines all my life. The ones I have had for about the last 15 years have escalated to the point I spend most of my time in a blacked out room on Norco. A year ago, in California, I was absolutely cured after receiving Botox injections. Unfortunately, I had to move to Colorado where the frequent barometric pressure changes brought back migraines with a vengeance, and wrecked me. Nothing worked.

    I saw an article about the Cefaly device about three weeks ago, and ordered one immediately. The first day gave me some relief, but pain returned, and I had to take Norco. The next two days I experience a distinct change. No more headaches. Today, the wind has been blowing all day (barometric pressure change), and I was fine until late afternoon when I had a few throbs of an incoming headache. Late afternoon is my Cefaly time. I used the device, and felt an immediate improvement.

    I, obviously, cannot yet make any kind of objective claim about the device. I am impressed because I am presently in a disastrous place for anybody who has barometric pressure-caused migraines, and it has, in this brief period of time, worked better than anything else I have tried, and I have tried an enormous number of drugs (which I hate taking).

  • #51790
    Profile photo of JSpencer
    JSpencer
    Participant

    I have now had the device for over a month. As I outlined on my 29 April post, I am a basket case where I am now (northern Colorado). Botox had cured me in California. Information which has come my way recently suggests my headaches may not just be due to the frequent barometric pressure changes, which was the analysis of the Mayo Clinic in Rochester. I think the reasons may include the appalling pollution in this ghastly area of the US (sorry, it is not a John Denver “Rocky Mountain high”), and high levels of methane gas being released by drilling in this region. I had a murderous bout of migraines during a two day period the paper reported unusually high methane levels. I found out about the methane retrospectively, I don’t subscribe to the local paper. Who knows? But I was not watching for methane, and, in fact, never thought of it as being a cause. I do notice an intensity of migraines when the air pollution levels are high here. A story in the news today about air pollution harming brain tissue was very interesting to me.

    Anyway, regarding the Cefaly. I have noticed a drop in migraine frequency, and a drop in need for Norco when one hits. I did have a brutally bad period, and I was so laid out I could not muster the energy to use the device for about four days.

    I have discovered something, and I do not recommend this to anybody because it goes against the procedure for the US device, which, unfortunately, has only one setting, and does not have the European setting for counterattacking an incoming migraine (thank you very much, FDA). I have used it several times a day, and this didn’t seem to do anything. But, when I used multiple sessions in a row, I noticed it developed a capability to hit back hard against incoming migraines. Today, for instance, I had intimations of a real killer on the way. I used four sessions in a row. This seems to have done the trick.

    Frankly, I fear becoming a Norco addict I had to take so much through summer and winter here. My neurologist prescribed a perfectly appalling drug, Lamictal, which I took for six months. It never reduced the pain, as she had hoped, and it made me feel poisoned. I just finished withdrawing from it, and I am starting to feel better. On it my energy drained to 0.

    I have decided to return to California where Botox worked perfectly. Maybe I can get by with just my Cefaly. I am optimistic it might do the trick in more pleasant areas of the world.

    I do wish to emphasize the Cefaly has been performing in a area which puts it to a severe test. I declined my Botox injections two months ago because it had been utterly defeated here. My neurologist seems to have no interest in my results with the Cefaly, but., let’s face it, if this simple relatively inexpensive device beats migraines, her lucrative Botox biz will evaporate. Another doctor derided it, and despite $11,000 worth of testing at the Mayo, tried to tell me my migraines were “anxiety.” The doctors here are wondrous bad. Avoid Colorado like the plague!

  • #51802
    Profile photo of Howard Fites
    HFites
    Participant

    JSpencer, Colorado was home to one of my worst migraine experiences. The constant changes in altitude and weather drove me nuts, headaches, altitude sickness, I had them all. That was just a “vacation” and I’m back to living in California (Inland Empire) which has little in the way of altitude or weather. The Santa Anna winds and occasional rapid temperature drops do trigger migraines.

    I’ve used Cefaly for a couple months now and I’ve had a 75% drop in frequency, from 20 to 5 a month. All my migraines now appear related to rapid weather changes and my others triggers such as stress, food and light have all but gone.

    I do find the device only prevents onset of migraine and does nothing once the migraine has started. I use it once a day, every day, at the same time. I hope you find relief soon.

  • #51889
    Profile photo of MaFixIt
    mafixit
    Participant

    Jspencer:

    I, too, have spend literally thousands of dollars with the Mayo Clinic (they are close by me and my primary care doc is Mayo), and have gotten absolutely no relief from my daily headaches. They also tried to pump me full of anti-anxiety meds.

    I like my Mayo headache neurologist, but don’t feel like I get the “attention” I need from them. They give me a drug and send me on my way for 3 months. No follow up, no “how are you doing”. I feel like a number.

    I am going to try Botox one more time with my pain doctor outside the Mayo. The last time I tried it, it did not seem to help, but I am willing to give it another go now.

    It seems that with me, if they find something that helps with one type of headache, I get a different type instead. Sort of like plugging a hole in the dike. You plug one hole and the water comes out another.

    Cefaly is not really helping me either. It was purchased on the advise of my Mayo headache doc. At least she thinks outside the box.

    Karen from Arizona

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