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A question of Light?

Hi all, I have a question for you. I have been taking nori for nearly 3 weeks now and been keeping a diary of how I feel each day. It’s the diary of symptoms I’m going to focus on here. I think I have found some of my triggers. The main one appears to be light (we’ve heard that before!) especially ‘artificial’ light & bright lights - resturants , shopping centres etc. Also I seem to have problems with lifts - ie, I get out and my head has a little catch up & legs feel ‘off’. Also uneven surfaces sometimes make me a bit stumbly! So, the questions i have for you guys are firstly, does anyone else have these triggers , secondly how can I avoid unavoidable places - I have two toddlers that I take out to eat etc but more importantly I have to do the food shopping! Lifts obviously can’t be avoided as I have a double buggy that can’t be manoeuvred up flights of stairs! Or will the nori eventually (hopefully) make this symptom better too? Does that make sense? I also have smaller problems with tv & computer screens. Anna tips, info, stories would be great! Thanks a lot!
Anna

Anna I don’t know how to avoid those places, but if you know the lights are bothering you, I would recommend getting sunglasses or tinted glasses. I got a pair of Migralens glasses, which are essentially tinted sunglasses and they helped me a ton until the Topamax eventually kicked in. I can’t say if they helped strictly because they were sunglasses or if the special migraine tinting helped too, but they definitely helped me with the bright artificial light problem which was my main issue. Wearing sunglasses indoors does look at bit odd at times, but it sure as heck beats being sick!!

Thanks for the reply Jamie :)! Fingers crossed! I didn’t think of that - and yes I don’t care how silly I look anymore! Thanks for the tip! Jamie, may I ask you how long did the topamax take to kick in & I hope your feeling better now?
Anna

The Topamax helped me quicker than average. Usually you are not supposed to expect results for at least 2 months, but I was definitely feeling quite a bit better about a month in and I felt nearly 100% after about 2 months on the medication. I’ve fluctuated between 90-100% since then with only very minor symptoms, so it has done wonders for me.

Before the Topamax I tried Nortriptypline for about 7 or 8 months and it just wasn’t helping me. I tried it all the way up to 150mg, and while it was a great mood stabalizer it just wasn’t changing my MAV symptoms.

Since bright artificial light and intense anger were my two main triggers, I found the eye-shades to be a relatively effective way to avoid a significant amount of my symptoms, especially in public. Now that the Topamax is working I don’t need to wear them anymore, but for the year I was sick I carried them with me religiously and would put them on at the first signs of symptoms. I got pretty tuned into the tingling feelings that would start in my head and signify that bad things were on the way)

Interestingly enough, bright sunlight never seemed to be a problem for me, just artificial light.

FYI, the researchers at the Moran Eye Center at the University of Utah, which is where I ordered my FL-41 tinted lenses from, discourage wearing sunglasses indoors:

"…the most important step is to diagnose and treat any associated conditions, and to talk with patients about a few things they can do, including not wearing sunglasses indoors. ‘People who wear really dark glasses can actually dark-adapt themselves and increase their photosensitivity,’ Dr. [Kathleen] Digre [neuro-ophthalmologist] said. ‘Sunglasses outside, of course, are fine, but the darker the glasses inside, the more light-sensitive the person will become.’ "

FL-41 is a rose-colored tint which has been found to be helpful for people with migraine and other conditions that involve light sensitivity. Fluorescent lights have been a trigger for me, and that’s why I decided to get the tinted lenses, which I learned about from other MAV’ers on this website. Since getting them, I’ve had a reduction in the frequency of my headaches.

There’s an interesting thread on FL41 tinted glasses. It starts out with very strong skepticism regarding the whole idea, and leads eventually to som0e comments from a research-based prescriber or two.

optiboard.com/forums/showthr … 17cd997325

When I ordered my glasses from the Moran Eye Center at the University of Utah, they sent me a copy of an article about FL-41 published in the journal Headache - that was the first study, which was done in 1991 in the UK (“The use of tinted glasses in childhood migraine”). Most of the funding they’ve received at the University of Utah has been from blepharospasm folks (a light sensitivity condition that causes people to blink excessively and/or clench their eyes shut), so their published research articles have been in that area.

But light sensitive people with either condition do get improvement, and it’s not just anecdotal - there is some research (even if not a whole lot) to back it up.

Hi Anna,
I wear sunglasses in supermarkets, etc & find it does help quite a bit. Also always use a trolley even for a few items. I haven’t tried the miraglen tints yet but several years agao did have some prescription glasses which were tinted blue. The optometrist did some tests to see colour was appropriate for me. This was a study to try & help migraine sufferers, unfortunately it didn’t help me.
I was interested to read how you sometimes stumble & legs have a little ‘catch up’ to head - I’ve had these symptoms since my mav began and have had tests for perhipal neuropathy (which were negative) so just thought it was another one of the weird symptoms that comes with mav! Yours is the first post that I’ve seen mention this.
I find shopping hard enough without babies/toddlers along so I really admire you for coping with all this.
Barb

Hi all

So are we saying wearing glasses inside will not help in the long run as your eyes need to get used to it and the glasses will make you more sensitive to light?

:shock:

I use the FL-41 tints and strongly recommend them as they block out the flickering :smiley: of fluorescent lights sometimes not completely but they do help more than your normal conventional sunnies

Being the tennis freak that I am I found it interesting to discover there are two young women players on the professional circuit, Sam Stosur from Australia and Kirsten Flipkens from Belgium both of whom appear to have become dark adapted through much wearing of sunglasses outside to the point they now play in them. As far as I am aware neither are migraineurs which only goes to show how others are prone. Helen

By the end of the Wimbledon Fortnight 2019 I admit to being amazed at the number of players wearing dark glasses on court. I noticed one at least wearing what would appear to be a reddish tint and many more than in previous years wearing various (mostly reddish or brown tints) in the audience. This must mean greater general awareness about eyes and bright lights which is good. If nothing else it means shyer migraineurs can be confident that they blend in easier if such things were previously bothering them. Helen