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Ataxia Support Network

Light sensitivity


#1

Hello,

I’m a 40 yr old female that was diagnosed with EA2 after years of unexplained symptoms. Mine is with migraine too. It’s really becoming very debilitating. I get real weak dizzy and nauseated from being in the sun. Does anyone else have photosensitivity? And how do you treat it? Please help, Amy


#2

Yes, I have photophobia, especially in the morning with that initial change from night to day. Also driving can be an issue when driving past trees with the sun flashing through the trees. I wear a hat and sunglasses. I also try to avoid dawn or dusk driving. Being that I’m in Australia we get some stingingly hot days (45C+ at it’s hottest) but I try not to go out in anything above 35C.

Merl from Moderator Support Team


#3

:smirk: I totally agree re light flashing between trees. I don’t think I could cope in Australia, the heat and humidity would floor me :sweat: It’s not just bright natural light that can effect me, fluorescent lighting in shops/hospitals etc can bring on horrendous heavy headedness/brain fog :woman_facepalming: I’ve started wearing my sunglasses indoors for these occasions and it has helped, although I have sensed some odd looks in my direction :sunglasses: In the past, I’ve had Iritis, this caused me to be ‘lightsensitive’ and at times can bring on double vision :smirk:xB


#4

Speaking of problems driving (which I have a dawn/dusk and a night because of migraines) instead of "regular’ sunglasses look for glasses that are yellow or amber tinted. Sometimes they’re actually called night driving glasses. Truckers wear them so you can often find them at truck stops. You can also find them at dollar stores. Or, if you wear prescription, you can pick up a pair for about $20 via the discount eyewear site Zenni Optical, just get glasses with the amber tint.

azurelle


#5

Amy, :thinking: I’m just wondering, do you think your dizziness might be a side effect of Verapamil :slightly_smiling_face:xB


#6

For my photophobia, I invest in great sunglasses and then take them to the optometrist for lenses. I have them make the lenses as dark as possible, put anti glare film on the inside and outside, and anything else that can help. Plus, my frames cover as much of the sides as possible (which is hard to find in non-ugly versions!). Doing it this way has really helped!


#7

:slightly_smiling_face: That’s helpful advice. I agree, it really does help to block every bit of light. I have some huge sunglasses which I used to wear in addition to my prescription glasses. At the moment my eyes are much improved, and I’m able to wear some tight fitting Maui Jim sunglasses by themselves. :slightly_smiling_face:


#8

Hi [quote=“Beryl_Park, post:5, topic:6721, full:true”]
Amy, :thinking: I’m just wondering, do you think your dizziness might be a side effect of Verapamil :slightly_smiling_face:xB

Hi, thanks for your reply. I don’t remember telling you about verapamil. My memory has gotten really bad from all the meds I take. And no I don’t think so because I had it long before the verapamil. I still have episodes and it seems like each time I get weaker and weaker. I don’t always have a bad migraine with it. I have a trip planned to Florida at the end of May and I’m worried about going since I’ve recently become so photosensitive. I always wear a hat and sunglasses but I’m also really sensitive to heat. Not sure it’s a good idea. How are you getting along?

Thank you!!


#9

:slightly_smiling_face: I’ve been holidaying in Florida since 1993 and I always look forward to a good dose of sunshine. It can be in short supply in the U.K. :wink: Last year I was there in March, prior to going to the NAFConvention in San Antonio. Can you believe I forgot to pack my special sunglasses :woman_facepalming: None of the Optometrists I spoke to could help, so I had to make do with a large visor (which I later left in a taxi :roll_eyes:) and occasionally a hat.

As it turned out, there was practically no sunshine in San Antonio but it was overwhelmingly bright :smirk: Any outdoor time was spent looking for somewhere indoors :wink: Then it was back to warm-up in Florida, before heading home.

In Florida, particularly during the summer months, the humidity drains me. While the rest of my family are spread out around the pool, you’ll find me inside with the air conditioning :joy: I wear cotton, and keep covered as much as possible because I’m light skinned and burn easily. And, I find carrying a small battery operated fan is very helpful. Whenever possible, have the car running with the air conditioning on to bring the temperature down before you get in.

I’m ok thank-you :slightly_smiling_face: Enjoy your trip, I’m quite jealous :wink: xB


#10

I thought I was the only one who had that! I was diagnosed with Cerebellar Ataxia several years ago and the light sensitivity recently started. I dont understand it. Im not bothered by street or indoor lights but cars putting on their brights at night makes me undone so doe lights on firetrucks and camera flashes at night. Its very debilitating bc my whole body jerks and i have to cover my eyes. Thanks for writing! oh and Beryl, i cant breathe without air conditioning. like you, not having it is out of the question.


#11

You are funny. Your luck sounds about like mine. I’m not sure the FL trip is such a good idea. I’m seeing a new neuro this week and I’m going to see what he thinks. I sometimes get really sick with these spells due to the sun and heat, which I’m all just realizing. I do think the fan is a good idea though. Thanks for that.


#12

I’ve been wearing mine indoors too. I had a class all day today and I wore them. My classmates probably think I’m nuts, but that’s ok. I was thinking I could get transition lenses for inside bc I have reading glasses as well, and then I have my dark expensive sunglasses of course. Any thoughts on the transition lenses? I know they are polarized.


#13

:slightly_smiling_face: I’ve started wearing my sunglasses inside the supermarket because the fluorescent lighting can disorientate me. And, this weekend we’ve had a heatwave, so I’ve hardly had them off :sunglasses:
:thinking: I’ve never tried transition lenses. Mainly because I had intended wearing them fulltime, and my Optometrist thought they wouldn’t darken quickly enough for me. But, that opinion was quite a while ago, and my eyesight has improved dramatically since then. Although you and I have something in common with this light sensitivity, you’ll never know until you try them for yourself.
:smirk: It’ll be a shame if you put off your trip because of what may happen. See how you feel after speaking to your new Neurologist about it. :slightly_smiling_face: xB