July 24, 2013
this is my first time on the forum. I would like to know if somebody has tried the Rio Light Mask From United Kingdom. It is a light therapy (photic stimulation) for migraines and PMS. I hope someone know it, because I'm thinking on buy it.
Nancy Harris Bonk37
July 24, 2013
Welcome to the discussion forum! We are so glad you are here. Let me see what information I can share with you about this.
I've not heard of this device before so I did a bit of research on it. From what I can tell, it sounds to me as if a headband placed around the head of someone who has migraine and includes patches on the eyes, distributing flickering lights would be intolerable. Flickering lights are a strong trigger for many people.
After looking over the The Rio Light Mask web site I noticed it uses dated terms to describe migraine, such as common and classic migraine. Migraine without aura (formerly called common migraine and others) and migraine with aura (formerly called classic migraine and others)are the correct terms used now. There are also contradictory statements on the site such as "this programme is for use by all migraine sufferers as a daily preventative treatment." Then a few sentences later states when talking about "common" migraine,"...is generally not used as a preventative treatment for migraine since its high frequency of operation can make it less effective."
In my opinion, I would save your money and look for a migraine specialist instead. Have you been able to identify some of your migraine triggers? This is an important thing to do in migraine because once we figure out what our triggers are, we can learn to avoid the ones we can and try and manage the ones we can't. Let me share some information with you on triggers you may find helpful; https://migraine.com/blog/migraine-management-essential-trigger-management/.
Let me know what you think and we hope to hear more from you!
October 2, 2013
I also do not have the Rio Light Mask and was thinking about trying it, while £50 just to try something that doesn't work, as you know, is off-putting.
So I'm in the same boat as Nancy Bonk as well, neither of us having tried it.
I note it is of course a sensible thing to consider if any potential therapy for someone's migraines could be ineffective or harmful as a trigger or something that makes it worse. Looking at the Rio Light Mask description, I have thought, 'Could that not be a trigger'.
The point is that this should be considered but that Ms. Bonk is just guessing without trying any potential therapy aid. Certain kinds of light have been known to aid migraine if seen through closed eyelids.
Again, I can only guess also about the mask, but I found a handful of reviews from users that may suggest the aid can work
[Edited by moderator for content}
October 2, 2013
Hello Amanda and lcb1,
It seems this particular device has been around for a very long time, making me quite suspicious indeed that, not only have we not ever seen it at conference (including International) but that there has been literally no discussion on it in any forums I am aware of. Of course, the device is illegal to sell in the United States, and this is a US website and forum, however, if it was truly a wonderful item, wouldn't there be lots of people talking about it, buying it, and working (or at least mentioning) to get it approved in the US?
I have never tried the item, nor have I ever heard of it. I share Nancy's concerns, particularly because I will not test something on my brain that is made by someone who doesn't even know the basics of Migraine medicine, diagnosis or pathophysiology. This really bothers me.
Light is an important part of our environment. Here is an article that discusses the importance of light and how it is used to manipulate animals: https://migraine.com/blog/migraine-triggers-the-power-of-weather/ In fact, we know that even those that are blind are still responding to certain types of light. Our brains are made to use light to signal it to make specific changes. However, Migrainous brains are different than the average brain. We tend to be much more sensitive to changes. Flashing lights are known to be a trigger for some people. This doesn't mean it will be a trigger for you, however I would feel a lot better about trying something like this if the company was well known for its age and offered a guarantee. Many other devices that claim to help Migraine do offer a guarantee, and I have tried some of them myself. I'm not sorry I tried them, but I spent literally years checking out the science of a couple of them to be sure I wouldn't make myself worse. Worse simply is NOT an option for me.
Good luck with your decision. I caution you to beware that many reviews are created by those trying to sell a product. Seek out reviews on your own.
October 3, 2013
I am not in any way affiliated with anyone selling this light mask discussed, and indeed I am making it clear that my response is a guess as much as everyone else's question or response replying here so far. It would be good if someone who has tried this item could respond, while, again, each persons' response is different.
I understand that the founders of this site do not wish links to stores posted and direct them to be removed, albeit though that my link was to customer reviews which could offer some response to the question asked. (And not in any way to a person selling the item. The device is in fact completely unavailable in that store, has been for some time. There is no indication of being restocked, while this is the British selling branch of the largest retailer.)
There are still a few retailers who sell this item and should ship internationally from the UK, which should be found by Google searching.
For a summary of the reviews, there were only seven. While the majority of the responders indicated a clear aid to migraine suffering with the mask (some seemed surprised again, as it is lights), a notable concern in fact was in the physical quality of the mask, which seemed to be low. Another concern was that the battery was very hard to get, and someone suggested that may be an after sales strategy. But I couldn't see if the makers indeed sold the battery or not, and therefore if it was available at all to many people at all (I seem to remember hearing something about this in the past).
As Ellen indicated, flashing lights can be a trigger for some people, but that doesn't mean it would be a trigger for you. Also, it may sometimes be a trigger, but you may feel that using something which can help but is a trigger perhaps 20% of the time is a gamble too far.
One thing I would just like to question (given that I've read the reviews of actual users) is that Ellen perhaps considers there could be a general rebuttal about light therapy for migraines. While she notes that many migraine devices are not guaranteed and it seems to her many are made by persons completely unfamiliar with the medical bases of migraine. It's important to note that the UK's and the USA's therapy device and Health & Safety and marketing regulations seem to differ here. This device has passed the British standards, which are typically known to be rather high and comprehensive, relatively, in the world.
I have not heard of evidence against gentle light therapy to closed eyelids for migraine sufferers. If this is what Ellen meant, I'd really like to hear it, for I think this is a difference to standard knowledge about migraines.
Of course, no device is guaranteed for anyone, whether following sound medical protocol or not. For persons living in the UK and ordering online, the distance selling regulations mean any item can be returned within around 2 weeks if found not effective for purpose personally. For international orders, I suppose this would be offered, but the return postage of 3 or 4 days arrival time would be expensive and have to be paid by the buyer.
As far as I know, because the item is not able to be sold in the USA, it doesn't mean it is not legal to buy it from abroad.
Regarding the low stock in the UK, I don't know but it may be that a new version is coming out soon (which one might hope might be better physical quality).
It is a knife edge situation - Ellen is right to highlight the idea that many manufacturers can claim to have a migraine aiding product, but will not help. One might want to avoid all such products without any customer evidence of success. However, avoiding all such products could easily be to your detriment.
I think the thing to remember is that none of these items are claiming to cure migraines. None of them are claiming to substantially relieve your migraines, or to be a therapeutic version of a Sumatriptan or whatever tablet (if that tablet helps you). It really is to be a mistake to think of these products in that way.
As severe migraine sufferers know very well, we will take any chance of any little relief we will get. Some products, for example caps, masks and shawls, may not even offer actual any significant physical relief to someone at all, yet many people appreciate the psychological value of having something. It really does help. Just a slight way of relief can mean more in coping psychologically. My guess is that a lot of products will indeed help some to many migraine sufferers in small or very small amounts. A customer just has to decide if that is what they wish (or need) to pay for, looking at the price.
To be fair to these products, and with respect to Ellen, that is why I think ruling them out outright does not appreciate the kind of thing they tend to be, and the potential value. People who can't be helped when it seems like the end of the world (I' been so used to it and know very well), can find truly a kind of small elixir in the smallest of aids. I think it's not such a good idea to advise against this kind of relief outright. I know for some people that kind of thinking against a migraine would harm them even more and I sympathise a lot with that. But it ought to be born in mind that it's very different for others.
This angle does, I think, validate a good number of products that are on the market. I think people are sensible enough to make their own decisions. For anyway, if they spend 50 dollars on a couple of products which are of no use to them, if they can't be returned in an initial period, it's only 50 dollars gone in the natural aim of searching for even small relief aids. And they may be wiser in their future searches.