Cefaly for headaches and migraines

[girlandboy]

Hello, I've been using my Cefaly headband device now for about 2 weeks for my cluster headaches and migraines with pretty good results.
I was just wondering if anyone else had one of these, and what results you had?

[girlandboy]

Am I the only one with one of these? I wanted to know how other people were getting on with them.

[rosemaryc]

How are you getting on with this now?

[triballeader]

I have a diagonosis of Chronic Migraine and Trigeminal Autonomic Cephaligia. I eiether have migraine symptoms or 4-8 CH' attacks per day. Been under a Prof of Neurology and specialist Headache Clinic for years. Been around long enough to have heard all kinds of things held up as cures. I accept that in a trail of 2000 migraine sufferers Cephaly was deemed okay by 54%. What I have not been able to find is evidence for use in chronic forms of migraine, which types of migraine and none whatsoever for preventing or treating Cluster Headache. If it was a treatment of note OUCH UK would certainly be advocating for it. They do for ultra-highflow O2 valves and gammacore as its less intrusive than ONSI or DPS.

I suspect given where its marketed its not a heavy contender with supportive evidence for it to ever be made available via the NHS.

The current runner being considered by NICE for NHS use is gamma-core, a vagus nerve stimulator as opposed to a mere peripheral nerve stimulator. Given the choice between Cephaly and nerve blocks I would still take the nerve blocks. Not much fun at the time but based on available evidence you get a better pain break. Medical Trials run via NHS Headache Clinics have given encouraging date for treating cluster headaches and the more severe forms of migraine. My name is down for one once NICE have approved it as it should be easier to transport than high flow oxygen cylinders and lots and lots of drugs.

[rosemaryc]

Hi Triballeader and sorry to hear you have this too :-( I hope you are finding some relief. I saw the headache clinic at UCL yesterday and they were talking about botox and all the various preventatives that I haven't yet tried. I asked about Cefaly and she was not that positive but in the same breath said that Dr Matharu (the main man) did use it sometimes in his private clinic and that it does help some people. So I am going to try it first before I venture into the other options - obviously I have to buy it myself but if after 2 months it's no good you can return it and get the majority of your money back. So worth a try in case I think (as ever, not holding out much hope!).

[girlandboy]

Hi, I've not been on here for a while, but got rosemaryc's message.

I've now been using my Cefaly since November, and I can honestly say it's been a godsend. In fact I worry what I'll do if I ever either break it or it goes wrong!

For over 30 years I was getting between 2 and 4 bad migraines a month for which painkillers did nothing and my prescription of Sumatriptan would work 90% of the time but would make me go weirdly numb down my left side. I was also diagnosed with cluster headaches and chronic daily headache syndrome. I would wake every day with a headache already in situ. The migraines would last anything from 3 days to 21 days.
I wanted to get off the drugs and so thought I'd try the Cefaly.
It doesn't profess to work for everyone, but I thought it was worth a try. It claims to work by training the trigeminal nerve to not react to migraine/headache pain so continued use is the way to go.
I use it twice a day on the "preventative" programme (number 2), once at breakfast time and once before bed. It took about 2 weeks for me to notice anything obvious and since then I've noticed such a change. The migraines have gone down to maybe 1 every two months. If I feel one coming I stick the Cefaly on and put it on programme 1, which is for actually combatting pain. I'll maybe put it on for an hour by restarting it when it comes to the end of its cycle. And I'll take a couple of paracetamol which before using the headband would have been utterly pointless.
I no longer wake with a headache AT ALL. All my family have noticed the difference in me, and say that I even look brighter!! I feel so much better not having daily head pain.

I can't say that I never get a headache/migraine etc now, but they've been reduced down to a negligible level.
It won't work for everyone as the Company states, but it works for me. I think you have to stick at it and at least try it for a few weeks before you can decide if it's working for you or not.

[rosemaryc]

Girlandboy - thank you SO much for your post and for that little bit of hope! I am glad to hear it is working so well for you, especially as it sounds like you have a similar pattern ie waking every day with a headache that never really goes away, plus migraines. So did you use it on no2 even with a normal CDH type headache? Did you have one all the time?
Did you work up the intensity or do the full whack from the beginning? I did this last night and this morning on full whack but felt all day like I still had that strong pressure on my forehead. I mentioned this in an email to Cefaly and they said I should be working up (which isn't what the instruction booklet said). It wasn't pleasant but I could tolerate it ok at full intensity.

I am really heartened to hear that it has really benefitted the CDH side of things as, bad as the migraines are, I think it's the relentlessness of the CDH that really makes my life a misery at the moment.

thanks again so much - pls reply via PM if that's better for you.

[girlandboy]

Hi rosemaryc - I actually tried it first on programme 3 which seemed to be the most gentle. I still couldn't physically open my eyes with it though! It was if my eyes were stuck shut: very weird. I moved onto programme 2 after a couple of days and really I've stuck with programme 2 for everything apart from an actual migraine. That's when I move it to number 1!!
But for the CDH I just use it on number 2. I did try it on number 1 very early on just to see if there was much difference, and frankly it hurt! So I stuck with number 2 until I got more used to it.

But now I can use it on number 1 with no problem. Sometimes it makes my forehead go a bit numb but that wears off.

I will give you one tip though - the pads are quite expensive, so I extend the life of mine with something called Tac Gel which I got from Amazon. It makes the pad sticky again and I estimate that the pads last twice as long now.

Stick with it and see how it goes. At least if you find it doesn't work for you , you can get most of your money back. I hope you do get some relief though. I figured that if it even just halved my pain then it was worth it.

Oh, and I've not had a prescription for my migraine meds since November! Result!!

Good luck.

[rosemaryc]

Thanks girlandboy - I have a little hope at least for the next few weeks!
Did your daily headaches (were they like pressure ones?) or migraines improve first? I long for the day when I wake up without one.
Were you on a preventative for the CDH or just taking OTC stuff as needed?

Hope your 'new' life continues :-)

[rosemaryc]

Sorry one more question! Did you at any point initially (in first 2 weeks) feel like the pressure type headache was a bit worse than normal? Wondering if this means I shouldn't have it on full intensity yet?
thank you

[girlandboy]

Hi, yes I did have the CDH all the time, and you're right it does become very wearing. The daily headaches were weird, ranging from a banging thumping feeling to just a dull ache through my forehead, not unbearable but just never quite going. The daily headaches disappeared about the same time as the migraines. I just suddenly realised that they weren't there! And when a migraine was due (usually linked to my menstrual cycle) it just didn't happen!
I used to take Pizotifen as a preventative, but after a couple of years it stopped working. The doctor put me on betablockers which I stopped taking because of the side effects, and also offered to put me on an anti-depressant which I didn't want to take. So I used to try and either put up with it, or take OTC painkillers which would sometimes take the edge of the pain.
I can't remember the headache being a bit worse than usual at the beginning, but I think it took a few days before I upped the intensity. Perhaps you could try it twice a day on number 3 first until you get used to that? And then move up a programme.
But it certainly took a while before I got used to all the sensations in my head!! It was the one where it feels like a heavy weight on my head that was the most weird......but I love the rippling scalp sensations!!

[rosemaryc]

Thank you Girlandboy, maybe I've overdone it??. Def more pain over my forehead and also generally exhausted, though this may be unrelated. Tried so many things , that I am ry running out of hope of ever enjoying life. Your story is so inspiring, I just have to keep hoping,...

[girlandboy]

Don't give up hope, hopefully this will give you at least some relief. After all, doctors prescribe all sorts of things and what works for some people doesn't work for others. It's the same with this. I figured that even some reduction of pain was worth it.
Best wishes and good luck.

[rosemaryc]

Thank you girlandboy. I think I am getting a little addicted to it, and have a tingling forehead for a few hours after sometimes. I am using no3 and no2. It will be a week tomorrow, fingers crossed.

[girlandboy]

Addicted! Haha, that made me smile!! I find it a bit like having a scalp massage sometimes! I'd stick with the programmes you are using before you ramp it up to no1. The first time I used no1 I ended up with a red patch on my forehead for an hour! Didn't have a headache though. Keep me updated.

[rosemaryc]

Will do. By the way I know they say it's safe but then they say a lot of things are safe that aren't! Do you any worries about effect on brain with chronic use?

[girlandboy]

I know what you mean. I was reassured by the fact that it is FDA approved in the USA, and in fact you have to get a prescription for it over there, you can't just buy one.
And I've had no worries about any effects on my brain. In fact I was more worried by the amount of meds that I was using that were clearly affecting my brain. The sumatriptan made my whole left side go dead and numb (literally arm and leg!) and that was due to an effect on my brain, no doubt. After all, these drugs affect the veins and blood flow in the brain by constricting or dilating the blood vessels. The Cefaly affects the trigeminal nerve rather than the brain because the Tens effect doesn't go deeper or further into your head than that.
It was the long term effect of meds that worried me more.
And if anything......I feel perkier!

[girlandboy]

Incidentally, do you think we are really the only ones with one of these???

[rosemaryc]

It seems so!! Though a friend told me about it as her friends partner was using one successfully,

Can I ask, were headaches your only symptom? I have had a lot of other problems since the headaches began, which I think are more akin to fibro/cfs. Neuro at uCL was insistent that they were all migraine symptoms because my migraine is constant even when pain at a 2/10. I am not convinced.
I am doing no 2 atm and for some reason it is more uncomfortable than usual and it feels like my teeth are vibrating ??

[girlandboy]

Ah, it made my teeth hurt at some point too. I'd forgotten about that! I've had a few things come and go really. Sometimes it makes my eyebrows twitch, sometimes my scalp ripples more than other times, sometimes it stings my forehead. But not every time?

My main symptoms were the headaches, but I get various nondescript symptoms really, some that I can't really put my finger on but seem to be connected to migraine because I don't get them at other times.
I'm talking about nausea (but not actual vomiting), inability to cope with the light, just feeling "ill", constant yawning, weakness in my limbs, utter exhaustion, clumsiness, everything seems really loud!

I still get some of the other symptoms of migraine, but the pain is under control. I figured that I can cope with the nausea and ill feelings better as long as the pain is gone.

I don't know anyone else with one of these.....so that's 3 of us then?!

[mistymeanour]

Wow - thanks for this thread. I had not heard pf Cephaly before. I have chronic migraine atm but also have Migraine Associated Vertigo ( and often the symptoms of both together). I too have constant yawning, dizziness, a feeling of disequilibrium, fullness in my ear and tinnitus and often bad nausea. I never have a completely symptom free day - have had this for 30 years and lots of different diagnosis. Often I think GP's don't believe me. 5 months ago I had an occipital nerve block that gave me some relief but it has worn off. The Cephaly sounds really interesting.

[rosemaryc]

Hi Misty, sorry to hear you have all this too.
I am too new to Cefaly to say if it's working, but if you decide to try it then Google cefaly EU rather than go to the UK site, as euro exchange rate makes it £40 less and it is still free post and arrives in 2 days. You have a 2 month trial and if no good you can return it and get most of your money back.
Btw I had an occipital nerve block done and it didn't help- my headache just moved position ! I also have vertigo and tinnitus.

[rosemaryc]

Girlandboy, when you say 'Ill feelings' do you mean fluey/achey? I managed to get through a day in London yesterday without my headache becoming a full migraine, but felt awful otherwise - shakey and achey. This is common for me.

Doing my morning no2 - though still find the pressure a bit much at times!

[rosemaryc]

Sorry girlandboy, also wanted to ask you if the improvement after 2 weeks has been incremental, or if you plateaued at some point?

thanks and have a lovely weekend !

[girlandboy]

Hi misty, sorry to hear you're a sufferer too.
I hope you've found the info on this thread interesting. Here's a link for you to read about it just in case you couldn't find one. www.cefaly.co.uk/ But as rosemaryc said, I also ordered mine directly from Belgium. Came in 2 days and very prompt with enquiries should you need to get in touch.

rosemaryc, my "ill feelings" are hard to describe. I don't feel fluey or achey, just very unwell. If someone was to ask me at the time, I'd probably just say that I didn't feel very well. Sicky and disorientated and worn out, and just wanting to go to bed kind of feeling.

And the improvement after 2 weeks carried on a little longer, but since then it has definitely plateaued. Probably because I'm not going to get any further improvement, but what I have had is enough! It's made such a difference. In fact my DH only said this morning something about "now you don't get headaches anymore" which isn't totally true, but near enough!! As I said before, I still get some of the other migraine symptoms, but hardly any pain now.

I hope you all also have a good weekend, and hopefully headache free!

[rosemaryc]

hi Girlandboy,
hope you are still well...

I am just over 2 weeks in. Had been feeling that the Cefaly was definitely helping to reduce the CDH/tension type headaches, so that's good. But have just hit the PMT migraine time and it actually seems to make it worse! Also damn uncomfortable even on no3 with a migraine. I realize you have still been finding it beneficial when you have a migraine (which of course is what it is meant to be treating rather than the CDH) and no experiencing any worsening? Will keep going of course and at least I think it is helpful the rest of the time. But at the moment can't say I am seeing much sign of being headache free!