Cefaly Device - has anyone tried this?!

[blinc]

A friend recently brought a Telegraph article (around 13th June) to my attention regarding something called a Cefaly device. I read about this in the article - it can be bought direct, or even from Amazon - reviews seem to be pretty amazing! (almost too good to be true!). I was wondering whether anyone has tried this, or has heard about it? It is quite expensive, but if it works...It sounds tempting, but a lot of money to waste if useless! It seems odd that doctors don't mention it, if it is so wonderful! (my head hasn't been so great since last posts, but then again, I haven't been so 'clean living'!)

[Cally01]

Hi blinc 😅 yeah i purchased one just over a year ago, used it for 3 mths 3x a day on setting 1&2 ( can't remember the way round but one setting is while you have a migraine and the other is to prevent migraine) i didn't get any relief at all, the adds show you a woman casually reading a book while using it!! I could certainly not do that!!

Stage 3 did help me sleep though, it relaxes you.

My neurologist told me they were doing 3mth trials on it but didn't have one available.

He also said they were having good results with certain types of migraines but unfortunately he didn't go into any detail 😔 . I was diagnosed with hemecrania continua but don't use me an an example because I'm going through treatment for TMJD as i have probs with my jaw.

Now, I'll describe what it felt like for me! It was like someone was slowly boring a whole through the middle of my skull then someone was actually inside my cranium massaging my brain with their fingers then knuckles....really weird 😣.

I also purchased a Tens machine for neck & shoulders.... no help at all 😕.

Hope this helps or someone else has a more positive experience to share.

Good luck 😆

[blinc in reply to Cally01]

Thanks for your really useful feedback Cally...makes me think 'proceed with caution'!! I certainly won't rush into buying one but will wait for more feedback... your description was interesting and vivid! Interesting that your neurologist didn't completely dismiss it, I guess! Once again I will see what experience, if any, anyone else had had, but thank you very much again!

All the best to you😄

[Cally01 in reply to blinc]

Your welcome 😃. It is suppose to reduce the level of pain you experience during a migraine and eventually the frequency of your migraines.

You never know maybe someone has positive feedback.

If my next jaw treatment does the trick for me, mine will be looking for a new home 😃.

Here's hoping 😞😞 you take care 😆😆

[blinc]

You too... I do hope your jaw treatment works😃

[babs1234]

Hi. I bought a Chi machine a few months ago. Very expensive £400 but my migraines definitely improved since using it however I have also started taking magnesium citrate, fever frew and evening primrose oil supplements. Someone also advised for me to drink a cup of coffee in the evening ( mine were night migraines) I also started daily shoulder, back and neck excercises .......something or a combination of all has worked and I am now getting far less and very mild episodes. Thank God because I was losing the will to live

[blinc in reply to babs1234]

Really interesting - it is always intriguing as to what is working when you do a combination of things to help. I wonder whether it is one of those things in particular, or, like you say, a combination, but thank goodness things have improved for you.

[Shawnie in reply to babs1234]

I haven't heard of Chi machine? and have been thinking about trying Cefaly. I would like to hear more about it if that is ok? I have struggled badly at times over last few years....the pain and exhaustion can really be too much at times(my migraines became almost daily and also tend to kick in during the night so really disrupt sleep). I have no help from my G.P so hsve had to find my own way..... I think I knew that I needed to figure a way to live with this disease and stop fighting it. Now I am trying to take some control back .... magnesium..... meditation .... acupuncture ...and a new medication. ....got to keep hoping that I will get a combo that helps me get my life back. Hang on....there are a lot of us going through the same things.

[blinc in reply to Shawnie]

An extremely kind lady has passed her Cefaly onto me - I am just waiting for the electrodes to arrive from Amazon. I am full of hope, as the reviews do generally sound very promising (though it is obviously not for everyone, as some have posted here). As with everything (even some medication), it seems worth persevering to give things a fair try. Also a headache diary has helped me see any recurring patterns or triggers. My headaches very often start in the 'early hours' (I read about why this happens - there is a biological reason!) and wake me up at about 6am - and then gather momentum - just horrible. But then I can have some very clear spells, and one good thing about keeping the diary is that it reminds me that I don't always feel bad! I can then get a good 'over-view' of what is happening, and see if there are hormonal factors, dietry etc, and I can try to take steps to control. Usually it is a combination of factors that trigger (I remember being told this by the Migraine clinic - useful)...a bit like being 'tipped over the edge', eg eating a trigger food, being stressed, plus over-tired, muscular-skeletal factors (too much computer time) etc. You are not alone, and this forum definitely provides some great support!

(by the way I take 50mg topiramate daily - have tried 25mg twice a day for a year of so - my GP and I try different doses. The tingling side-effects wear off eventually. I think it has helped! Difficult to say!). I couldn't survive without Sumatriptan when having migraine. Hopefully you can get some help from another GP too - I think the best combination is trying to help oneself, but getting some help from the GP too!

Best of luck! I will let you know how the Cefaly goes.

[Shawnie in reply to blinc]

Good luck ..... definitely worth trying. I think we have to hold on to every positive.... took me a while to find a bit of a plan. Like you the diary and a multi faceted approach is helping! Also support from others who are going through this. Looking forward to hearing how you get on. Fingers crossed

[blinc in reply to Shawnie]

Thank you! Sounds like we share a positive mental attitude at least!!!

[Frodo]

A specialist has just recommended it to me as worth a try as I don't do well with medication. The company used to (not sure if it still does) give you most of the money back if it doesn't work.

[blinc in reply to Frodo]

That's interesting and encouraging...from what I understand (but check), it seems you can get a refund from Cefaly if it doesn't work - do please keep us posted and good luck!

[udall]

I have tried this and found some relief but it didn't solve the problem completely. It is a strange sensation but I got used to it on level 2. I don't use it any more and would gladly pass it on to anyone for whom it might be helpful. Not sure how we would make contact?

[blinc in reply to udall]

that's a really kind thought...as someone else suggested...may I give you my email, and perhaps geographically we are not too far apart?!

[udall in reply to blinc]

Yes - I am in Derbyshire so hopefully not too far away. My email is [e-mail].

[blinc in reply to udall]

That's great! Thank you- I'll drop you an email!

[MSWARRIORBRANDI in reply to udall]

If you are willing to pass it on I can pay for shipping and handling if you have a PayPal? Let me know. Thanks

[udall in reply to MSWARRIORBRANDI]

Sorry MMSWARRIORBRANDI but I have already passed it on to someone else on this blog. Hope you find one to try.

[blinc in reply to MSWARRIORBRANDI]

Yes, sorry. Hope you find one. All the best

[timj]

They do a decent deal if you buy it direct - I think pay £250 but get £200 back if returned within 30 days, something like that. In my opinion, if your migraine is always on your forehead it could help, I get them across the top and over both temples so the machine didn't work for me - it's a strange sensation.

I however would recommend botox which has significantly reduced my migraine from about 20 times per month to under ten - I still get regular headaches which are almost certainly due to medication over use, but that's a different issue altogether. I had to have tried three other preventative drugs, and if none had worked then I was allowed on the botox program - roughly every three/months I have 25 injections in my head/neck/shoulders - it's not the most pleasant experience but the nurses work very quickly indeed - I'm usually in and out in less than five minutes. No side effects, but less migraine - happy days.

[blinc in reply to timj]

thanks so much for your feedback - I think we probably get very different types of headache - mine are more throbbing at the back of my head, (feels like I have a tight clamp on) rather than forehead - really glad the botox has helped you.

[seawarrior]

I tried one about a year ago and after initial apparent but minor success if turned out to be a disaster. After a minute or so, the sensation from the device because unpleasantly intense and then the device cut out. This happened numerous times. I asked the Cefaly distributor what might be happening. Ultimately, (after a lot of waffle) he blamed my occipital nerve for causing feedback which resulted in the device switching itself off.

I returned my device and got most of my money back. I was not happy at having to pay £40+ for the device to be recycled because, in my opinion, the device was at fault. I was not sending it back because my headaches didn't lessen or because I didn't like using it.

[blinc]

Thanks very much for your feedback - obviously not a great experience for you. I'm going to give one a try from a very kind person. Will let all know if I have any luck.