Central Sensitivity Syndrome | A Survivor's Guide

Beating Drug-Induced Light Sensitivity

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Beating Drug-Induced Light Sensitivity

Light sensitivity is a side effect of many medications. Considering that those with Central Sensitization are typically already very light sensitive, often moderately to severe, this side effect poses a HUGE problem. For most people, severe light sensitivity would suggest to the prescribing physician that the patient should discontinue taking the medication and they should try something else.

But, what if that medication was the only thing that has ever helped?

Image result for light sensitiveTypical CSS light sensitivity results in a survivor wearing sunglasses on sunny days and inside brightly lit spaces like doctors’ offices and grocery stores. However, add on more light sensitivity and this could range from wearing sunglasses all day long, even in the home, to being so severe one cannot even open their eyes.

The latter I experienced with Lamictal. It was so severe that I could not open my eye even at night for nearly 12 hours, and barely for nearly 24 hours straight. I immediately went of this medication and was prescribed something similar, Tegretol, but the same light sensitivity side effect was present.

light sensitiveThe MASSIVE disappointment was that this was the first medication that I had tried that actually relived pain in my at-rest muscles (when resting, but not so much when moving around). 20 years of trying medications, and these actually showed real potential. So what could I do, even if the light sensitivity side effect did wear off with time, I certainly couldn’t go weeks if not months blind with burning eyes and the massive headache that followed.

No one was sure what to do. So, I went of the medications, did some research and found a few possible solutions.

I picked Lamictal over Tegretol for 3 main reasons.

  1. Image result for lamictalLamictal’s half-life is substantially longer than Tegretol’s. This means no downtime overnight – it won’t wear off. And, I may not need to take it again in the morning, just at night. So, not getting lit back on fire at 6am was a major plus.
  2. Tegretol either didn’t work as well as Lamictal, or it was reducing the effect of my Mexiletine which helps my nerve pain.
  3. Lamictal has a broader spectrum of action than Tegretol, so it has the potential to treat more symptoms.

BUT, first I had to deal with the light sensitivity and headaches. So, first things first, I researched supplements that have been found to reduce light sensitivity. The main ones mentioned were:

  1. Carotenoids like lutein and zeaxanthin
  2. Vitamin A,B, C & E

Now, I COULD have gone out and purchased each supplement and taken them all, but I didn’t need to do that, because I already had a supplement in the house that has all of those things. I’ve had this supplement in my home for years because it’s an excellent source of the vitamins and minerals one needs after using strong laxatives; which until going on Mexiletine, I was dependent on my entire adult life.

Swanson GreenFoods FormulasBroken Cell Wall ChlorellaThis supplement is Chlorella, a blue-green algae supplement bursting with vitamins and nutrients, but unlike multivitamins, chlorella doesn’t make me feel sick after taking it. I also threw in a little extra Vitamin C, 500mg, and sat back and waited. About 2 hours later I could open my eyes in the house again – wide open. There was still a very slight sensitivity, mainly because of the remaining headache. I was able to knock that out with 500mg of Naproxen (Aleve).

I’ll be honest, I am a tad bit more light sensitive, but not enough to interfere with my day to day while I wait it out. I am only on half of a 25mg tablet at the moment, bit it’s very noticeable in reducing my muscle pain, maybe a little joint pain too.

Here’s the dose ratio:

  • 5mg Lamictal
  • 500mg Chlorella (broken cell wall – important because it provides more nutrients)
  • 500mg Vitamin C
  • 500mg as needed for headaches
  • Lubricant eye drops as needed.

I recommend taking Lamictal at night, and leaving chlorella and vitamin C tablets next to your bed with a glass of water. It does take a little time to kick in, so be prepared. You might want to keep a pair of sunglasses near the bed, or set an alarm to wake you up a couple hours or more before you actually need to get up.

You may or may not need a second dose later in the day. If so, it’s safe to do so. Do pay attention to your stomach however, as chlorella can cause diarrhea and cramping in some. I don’t have an issue with it, but if you do, break the chlorella tab in half, it may be just enough.

The listed supplement dosages may be enough to go up to the full 25mg or higher. It will vary person to person, but start experimenting on a dark and dreary day when you don’t really have anything else to do.

Keep in mind though, this may also help with your light sensitivity in general. So give it a try!

Best of luck! 🙂

 

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