Latest accessory to combat the pain; Cefaly.

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Cefaly is a device which is like an external stimulator mainly designed to treat migraine conditions, and also to relieve stress. As you can see from the picture of me wearing it above it is like a plastic frame you wear around your forehead attached to an electrode stuck in the middle of your forehead just above your eyebrows. The device stimulates the Trigeminal nerve and attempts to decrease head pain in conditions like migraine. There isn’t much research done on if it is helpful for NDPH patients however I know a few that use it and say it has helped some. It isn’t a cure and can take a few weeks or a month or so to see if it has any effect, so like most treatments really. It’s relatively new to the market and has to be bought privately, and if you are in the US you need a prescription to get one. However in the UK you can just order it online and have it delivered right to your door, though it’s not exactly cheap.

At my last appointment with my neurologist in November he said it was the only thing left to try and that it might be worth me getting one. So after Christmas my parents ordered it for me and it arrived unexpectedly this morning whilst I was at college. My neurologist said I would need an appointment with his nurse to be taught how to use the device, but after reading the instruction manual it came with and speaking to some migraine sufferers online, I decided that an appointment and a trip to London would not only be a waste of time for something so simple but also a waste of money. So I went ahead and tried it out.

The UK device differs from the US device which only has one program, whereas the Uk one has 3, abort, prevent and stress relief. The programs last 20 minutes, with for the first 12 minutes the intensity increasing till it reaches the maximum intensity for that program at 12 minutes in. You can put a hold on the intensity increasing by pressing the button and it will stick at the intensity you stopped it at for the rest of the 20 minutes. I followed what the instructions said and started on the abort, program 1, which happens to be the most intense setting.
It was a very strange feeling to start with, my forehead and eyebrows felt all tingly and pins and needles like, and then my eyebrows were going to fall off (I know, weird right!) and then came this intense pressure inside my head and intense pain. It was almost unbearable, however I suffered through it and managed to complete the full 20 minute program without having to put a hold on the intensity increasing. By this point I was in a lot of pain and very scared that when the device finished it’s program I would be stuck in the same amount of pain that I was in during the program, that Cefaly had made it worse. The program eased off and then eventually turned off and luckily my pain levels went back down to what they were before I started the program, which was a huge relief.

I was very scared that maybe Cefaly wasn’t for me, that the pain I experienced during the program wasn’t normal. However I then spoke to some migraine sufferers online and they said that my reaction to it was completely normal, that it is normal for it to be quite painful the first time round. However they did say that I should have started on the lower intensity setting, program 3 for stress relief, and also that I should have put a hold on the intensity increasing after a few minutes and not completing the whole 20 minutes. I was advised to have a break and have another go later but this time at the lower setting and not the full 20 minutes.
I have just completed my second attempt, it wasn’t quite as horrific as the first time, but it was still quite painful. I think I just need some time to get use to the stimulation of the nerves. A few migraine sufferers I have spoke to say that it has really helped them and some that they can’t cope without it. A lot of people who use it say it’s very relaxing, personally I don’t see that quite yet but you never know. I am skeptical that it will help me, but there is always a possibility and I pride myself of doing anything and everything to attempt to decrease my pain, so I couldn’t not try it. Though I don’t want to get my hopes up because I know the disappointment of failed treatments all too well, and it’s not very pleasant to say the least.

I will keep you posted on my progress with Cefaly, but I envision that it is going to take me a little while to get use to it and even longer to know whether it has helped any.

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10 thoughts on “Latest accessory to combat the pain; Cefaly.

  1. Thank you for posting this! I have an app. with my nuero. in two weeks and I want to come up with a couple new ideas. right now we are doing meds and infusions and I want to try something different! He is great about trying new things

  2. I love my cefaly! I’ve been using it for about four months each morning and night and it hurt so much at first but now I actually love the feeling and it’s so relaxing. It’s the only thing that has helped my NDPH. It hasn’t cured it, but it takes the edge off when the pain gets out of control 🙂 I hope it helps you!

  3. Thanks for this! Please keep us updated on how well it works. At my wit’s end, my 14 year old daughter who has epilepsy started having a headache In January of 2014, a couple of weeks after the worst seizure she’s ever had and it won’t go away. We’ve tried everything but hospitalization, infusion or surgery. Nothing works, not NSAIDS, triptans, narcotics (make it worse). And reading your story, you’ve tried every expensive and wacky sounding one of them to no avail! I’m thinking of trying the Cefaly on her, especially since we can return it if it doesn’t work if we buy it through Cosco! I am so sorry to see people suffer this way, especially young ones. Topamax seemed to have worked to some extent when I look back over her history, but side effects were not tolerable. Weight loss, constipation and dulled mind (even more than her gabapentin, which she’s gotten used to). Ready to try Zonegran on her, the peds neuro describes it as Topamax light. If it’s tolerable I’ll try that too. Tried chiropractic, acupuncture. Now neuro wants her to wear a neck brace.

    • Hi, so sorry to hear your daughter is suffering as well.
      Unfortunately Cefaly is no longer working for me, effectiveness wore off and then did nothig and then started to make it worse, and for me i was incredibly painful to wear, so I’ve had to send it back. That’s not to say that it won’t help your daughter though!

    • I had cefaly back in 2015 I think tried it for a couple of weeks but it made the pain worse eventually and was incredibly painful to have on. I’ve now had occipital nerve stimulation surgery last September as a last attempt to help the pain, unfortunately it’s been a nightmare and I’m now in more pain than I was before surgery. Turns out my brain apparently doesn’t tolerate stimulation, we are currently trying one more setting which is called burst and is very new before we make an assessment on whether to rule out this treatment option.
      Wishing you a low pain day.

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