Sunshine and Seizures

[CJR]

Hi,

It's been spring break for the kids this week so my computer time has been nada! But as the weather warms and we move out into the yard I've noticed a dramatic increase in my daughter's seizure activity. Despite being on Phenobarbital (dosage changes daily with Dr.'s advice) her seizures are NOT controlled. We know that she is somewhat photosensitive as that was one of her first triggers (computer lab at school = hand jumps/jerks). I've done a bunch of research and thought that I had famaliarized myself with what to look out for but... I NEVER read about sunshine!

As we were driving the sun was shining through the trees causing "flashing" which caused more hand jumps/jerks. Again, it wasn't all that surprising because I had read about flashing. However, after spending two days outdoors in the bright sunshine I've also determined that the bright sun is triggering nearly non-stop partial seizures (eye rolling & absence) without any "flashing" just the brightness seems to be the trigger. It's not just when she leaves the dark house and steps into the brightness of outdoors. Once she's out there it continues for the entire time she is out there. She also had two other seizures, one of which caused her to fall.

I, of course, called our family doctor who said that it sounded like a photosensitivity seizure and that he suggested that until we get to see the Pediatric Neurologist that we should get her some inexpensive very dark polarized wrap around sunglasses.

This sent me once again to the internet to see if there is any documentation of sunshine as a trigger. I've found a few small mentions but not anything saying that sunshine itself is a major trigger. Which leaves me wondering...IS my daughter the ONLY ONE?

[RobinN]

Hi,
I, of course, called our family doctor who said that it sounded like a photosensitivity seizure and that he suggested that until we get to see the Pediatric Neurologist that we should get her some inexpensive very dark polarized wrap around sunglasses.

sounds like a good idea. I know I have always been sensitive to sunlight. They seemed to trigger migraines, or at least cause pain. I haven't really thought about it much since I have been taking magnesium for my migraines. Perhaps I am no longer as sensitive. I live in CA so there is no getting away from sunshine.

Which leaves me wondering...IS my daughter the ONLY ONE?

Really doubt that one.
My daughter has been helped by neurofeedback lately. We have almost had a full month seizure free. Where as before it was 5 or 6.

Sensitivity seemed to be a common thread to the treatment.

[gel61820]

Hi CJR,

I have to tell you that your daughter is not alone and I will explain why. Please bare with me on this though, as it will take a little time to explain all of this.

I was diagnosed almost 40 years ago with acquired epilepsy, both grand mal and petit mal. My petit mal seizures are fluttering of the eyelids. Over the past 40 years I have gone through over 15 medications to try to find some relief from these frequent flutterings. No medication has ever helped. I have been on phenobarbital since day one for the grand mals and they have been controlled 99.9% of the time. It is just what has been called petit mals (absence complex according to current terminology) that I have struggled with over the years.

Finally I decided to give VNS a try to see if that would help. I have been activated since August of last year and to date have found no relief, so finally I asked my neurologist to sit back and listen to me as I wanted him to think outside of the box.

So, I explained that (1) I do not lose conciousness during the eyelid fluttering episodes; (2) I can temporarily stop them by concentrating and focusing on something; (3) I have been on over 15 anti-epileptic drugs and none have given any relief; (4) these episodes mostly occur when I go from inside to outside and when in direct sunlight; (5) dark glasses or sunglasses seem to lessen the episodes; (6) I do not respond to the strobe light part of the EEG; and finally (7) as I do not lose conciousness I am able to drive, walk, type, talk, etc through these episodes. This neurologist has only been treating me for a few years and was amazed that this was the first time I had brought this to his attention. As I explained to him, I have mentioned it to other neurologists and they have dismissed my attempt to have this discussion. My theory is that since my epilepsy was caused by a head injury (hit over the right eyesocket with a golf club while playing as a child) that I wondered if the eyelid fluttering was a separate problem but had been misdiagnosed all those years ago since it is very similar to children's petit mals where their eyelid flutter.

Yesterday I had an appointment and had an EMG of the facial nerves tested and guess what? Yep.. my right nerve is damaged. But that is not all of it. Due to it being cloudy and overcast we were unable to do the testing for blepharospasms, but I am going back to have this done. In fact his nurse made 3 appts within the next 3 weeks so if one day is cloudy, I can cancel and come in hopefully on the 2nd or 3rd date when the sun is shining. He is going to have me directly in the window looking out while he is doing the test to see for himself. He is almost certain that I was misdiagnosed all those years ago but will need to do the 2nd EMG to confirm it. If it comes back as this, I will be getting botox injections as this is what botox was originally approved for by the FDA back in the 1980s. And during his 30 years of practice he has seen many people with this condition have great results from the injections.

So to sum it all up, your daughter is not alone with the sunshine causing problems, but please recogize that it could be something else too. The tests are not painful, so if this sounds familiar, talk to your daughter's doctor. My neurologist says he can see why this misdiagnosis was made as they are very similar, and told me that if I had not brought it to his attention, he probably never would have thought of this as he does not see my eyelids flutter as I am in his office! I wish I had not had to go through 40 years of this but at least now we are getting closer to something.

If you want to read more on this, google blepharospams. It took me forever to find it as I wasn't sure how to spell it, and finally found it by doing search on WebMD for "botox eyelids".

On another note, there are types of epilepsy which are photosensitive. When your daughter has an EEG does she have seizure activity during the strobe light? I never do, in fact my seizure activity only becomes visible during my "naptime" while undergoing an EEG.

Please let me know what you find out. And I really do wish your daughter the best, as I know who difficult it can be to deal with something where sunshine is basically your enemy.

Hugs,
Cindy

[CJR]

RobinN~
Thanks so much for your reassurance. You always know how to make a girl feel better about everything! Thanks!

Cindy~
Wow! What a story. We have had an EEG and she did have a lot of seizure activity during the photosensitivity test. Before we had her tested she actually presented with some seizure activity during computer lab at school (hand jerks). So all in all I was prepared for her to have problems with flashing lights but I wasn't aware that brightness could also trigger events.

You're numbers 1, 3 & 4 seem really familiar to me. As well as the Phenobarb controlling the grand mals/tonic clonic yet it doesn't even begin to control the severe eye rolling & fluttering. She is not aware of the eye rolling, therefore, has no memory of it but I also wonder if she is following the eye flutter/roll with an absence seizure because sometimes she seems a bit... gone? You know?

So we've gotten her some dark polarized sunglasses and we'll see if that reduces the number seizures.

[brain]

I wear polarized sunglasses, but since being
on Zonegran (zonisamide), I've noticed a
dramatic difference when I'm outside in the
sun. I'm not so light sensitive as used to be.

But if it comes to flickering of lights, that's a
different story/issue there. This is one
anti-epileptic drug after being on many
different anti-epileptic drugs for years.

I'm intractable, however I also take
Clonazepam (Klonopin) which is the
side-kick with Zoneran and Folic Acid,
so it is working.

[Bernard]

I have read on various forums others mentioning that bright lights/sunshine can trigger their photosensitivity.

Heat can also be a trigger for some people. Heavy sweating can affect your blood serum AED levels

All that said, some sunshine is good for helping the body produce vitamin D naturally.

[brain]

I also want to add this:

I am NIGHT BLIND, because
of lights - before I surrendered my
Driver's License, by mid-20's, I couldn't
drive at nights anymore. Headlights, Signs,
Street Lights - all had effects on me; and
as Cindy posted, I too had been on numerous
anti-epileptic drugs ~ but only Dilantin
(Phenytoin) seemed to help.

It's impossible for me to shift my focus else-
where when driving, and nightglasses (aka
night driving glasses) were of some help - but
I found that wearing a specific polarized glasses
at night were better, hence why I had, later on
of a chatroom ID of "iwearsunglassesatnight"
which that is long gone.

It was extremely rare and only in extreme
emergencies that I ever drove at nights. However
the flip-side of the coin was being the passenger!
So I wasn't a big fan of night-driving, and even
WORSE were ......

THUNDERSTORMS & DRIVING!

You might as well stick a strobe light in
seizure provocation mode and stick it in
my face - it would be just as good and
polarized sunglasses (Aviators are the BEST
but expensive ~ and I will tell you worth
every single penny!) at this point would
almost be rendered worthless.

This is one reason why I have drapery
in my bedroom but blinds everywhere else
even in my current home. I always had a
light-weight back up Navajo Blanket that
I would drape across if it's really bad (but
someone or my ex took those) and used
clothespins, but that itself didn't always
spare me everything!

[CJR]

Brain~
THANK YOU! I had never thought about lightning having that effect on her! I guess it's something else I'll have to "lookout" for. We were out in the sun again today and I was very impressed by the change in her seizure activity with the sunglasses. Although, she is having a hard time remembering them. She might remember them easier if she had more severe seizures BUT there is NO WAY that I'm wishing for that. Her seizures are severe eye rolling & fluttering (Cindy said fluttering earlier and that is exactly what she does so I'm stealing the discription from now on) which she is not aware of and occassionally a hand or leg twitch which she does notice. But by the time it gets to the twitches the eyes are nearly constantly rolling ~ think once every 3-5 minutes! But now with the sunglasses she seems to be having eye rolls that are nearly the same as when she's indoors. I think. After all, the sunglasses are very dark and it's harder to see her eyes.

It's just good to know what to that I'm not mis-reading some of her symptoms. Thank you for all your help and advice. It's great having a place to find people who are all in the same boat ~ so to speak.

[1096]

light filters $averslife

[BuckeyeFan]

I know a parent through our regional epilepsy foundation who has a daughter in her early teens who can not tolerate the sunlight. She is very photosensitve and can basically only play outside on cloudy days and with sunglasses. Funny thing is she also has a son with E and he is not photosensitve.

This lady and her husband have their hands full. Two children with E and one other with learning disabilities.

[CJR]

Goodness! That is a lot to deal with! I can't even imagine... It proves an old saying my Grandmother used to say, "Don't complain about your problems because you're neighbors are probably worse."

[BuckeyeFan]

I have had to relearn that lesson plenty of times in my life. I never need to look very far to find someone that has it worse.

That doesn't mean our own problems still don't hurt! Just perspective to help us deal with them.

[CJR]

Well SAID, Buckeye! Couldn't agree more.