Near-Infrared Light Therapy for Seizures - Our Experience

Note: This is not medical advice. Anyy decisions you make for yourselves and your families are at your own risk. I am just sharing what happened for us.

I don’t normally post purely personal stuff here, but I think this information might be very helpful for a lot of other people, so I am posting this. It’s mostly just pure information about our experience with near-infrared light therapy as epilepsy treatment for our daughter, so no need to read any further if that is not of interest to you.

And many, many thanks to Dr. Ryan Cole, who first introduced me to the possibility of using NIRL for seizures. I am beyond grateful.

So here is our experience:

First, as background, our teenaged daughter has suffered from seizures since she was around a year old. Possibly earlier than that. She has had a few reprieves, the longest lasting about a year and a half. Prior to starting this therapy, she was having multiple seizures every day, most of them tonic seizures (not tonic-clonic), lasting between 5-30 seconds. She would sometimes have clusters. And yes, she is on lots of anti-seizure meds, as well as the ketogenic diet, and she has a VNS.

1. Last fall, we started using this device.

The company was recommended to me by a doctor who I met, and who told me about research showing success with seizures from NIRL. This product uses two different wavelengths: 810nm and 1050nm (these are both common for devices that are used for issues deeper than the surface of the skin.)

I started wrapping this around her head daily, for between 5-20 minutes (usually around 15 minutes), and also if she was having clusters of seizures.

What we found was:

a. If she was having a cluster of seizures, doing this usually calmed them down pretty quickly;

and b. Generally, her seizures seemed to get calmer.

This did not completely get rid of her seizures, but it did help—especially in the moment. And research has shown that NIRL can be used to treat status epilepticus.

2. In May, I found out about another device, that uses the wavelengths 660nm and 810nm.

What is different about this one—other than the 660nm wavelength in place of the 1050nm—is that it is about ten times more powerful than the first one we were using.

The power is measured in MW per CM squared, and is as follows:

For the first device: 810nm is at 14 mw/cm squared, and the 1050nm is at 28 mw/cm squared.

For the second device: 660nm is at 187 mw/cm squared, and 810nm is at 150 mw/cm squared.

With the second device, I use it for much shorter periods of time. Also, because it is a smaller, hand-held device, I have to use it on different parts of her head. I’ve been doing:

660nm for 30 seconds

810nm for one minute

I do this for these lengths of time, on several parts of her head: The base of her skull; left and right temples; forehead; and top of the head. I don’t always manage to get each spot, but always try to do the base of her skull, and sometimes I do some additional spots.

The recommended times are double this, but I do these times because they are what were used by another mom whose daughter’s seizures were dramatically reduced with this device.

After about ten days of doing this, our daughter’s seizures COMPLETELY STOPPED. (She has had a few things in sleep since then that were questionable, but no definite seizures.) They have been gone for over seven weeks now.

I should add that, after they stopped, I stopped doing the treatment every day—partly because I think it may have over-agitated her. She became very agitated once they stopped, and has also had some sleep issues—all of this is calming down now, and I do still do the treatment sometimes, just not as regularly as I had been.

So that’s our story. If anyone has any questions, please feel free to reach out to me. Oh, and no, I do not get any kind of financial benefit from sharing this information, or from anyone buying these products.