Sunshine and Seizures

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Thank you for those links! It had been suggested to me that the sneezing reflex that seems to be quite common may be somehow manifesting itself differently in my daughter. Jeavons Syndrome has never been mentioned to me before, and I will be contacting her neurologist to look into the possibility of a video EEG. Unfortunately, it looks like she is already utilizing the treatment recommendations, but with only partial success.
 
Hello. My twin sis and I have had issues with this our whole lives. It was worse when we were little though and at one point, I could trigger this in myself but as I got older I cannot do this and it comes quick! I am visually impaired and naturally more sensitive to light and changes. I noticed that it doesn't take long for my eyes to go to the left but I can still walk but not well and I don't really remember much from the seizure itself.
I feels strange as it starts up and feels almost relaxing- more like falling alseep during surgery. Kinda weird.
Even now- going outside too quickly, slow flashing and usually more dim than a strobe light, movement of traffice sometimes and breaks in constant light or sun light- sort of like trees overhead blocking the sun light. I don't really know how to explain it but I've had this since I was 6. Diagnosed with Absence seizures even though they were short complex partials. Had an aEEG (ambulatory) and found out that I had several seizures on the recording. When having the in-office EEG, they asked me several times how I felt during the photostimulation test and I told them I felt weird. They saw a driving responce which means I was close to having a seizure due to the light flickering. I was on two meds as I am now and I'm assuming that the meds stopped anything from happening but I'm going to ask for a copy of my EEG to learn more.
I am scared as far as complex partials go because it can happen anywhere and I don't feel safe. My guide dog is also a seizure responce dog and he will actually stop me from walking and stand perpendicular to me instead of remaining at my left side. I still have a hold of the harness handle and he knows whne something isn't right because I no longer pull back on his harness. This signals him to walk and guide forward- so if you don't have a pull, the chest strap signals for him to stop or slow down. But instead of slowing down or stopping totally he will stand infront of me and I did fall one time and it was on him. I was so so upset but it was a drop attack due to missed Tegretol.
I am on Lamictal XR and Keppra XR which is helping a lot. The Keppra XR works well for people that are photosensitive.

What's happening to your daughter is exactly what happens to me, even now as a 27 year old. When I was younger, Mom would wave her hand infront of my face trying to get me to stop "staring off" or "being out of it" but it didn't help stop it at all.
I mention it to my neuro but there isn't really anything they can do besides treatment of meds.
I wear Driverwear glasses that cost $500 and have UV, polarization and transition treatment to the lenses. It helps a lot and they change to light and dark very slowly since the lenses are so thick.
But I have heard of purple tenting blocking out yellow or white light I think it is.. don't remember for sure.

Take care,
Crystal and her guide dog Umbro
 
Crystal - Thank you so much - this is excellent information! We tried the Lamictal, but it did not have the same effectiveness as the Topamax / Zeurontin combination. However, I will discuss the possibility of trying Keppra with the neuro. Do you wear the Drivewear glasses all the time, or just when you are outside? My daughter does not need prescription glasses, so right now she is only using polarized sunglasses, which helps, but it is difficult to get her to wear them all the time.
It's so cool that you have a dog that can respond to seizures!
 
Has anyone ever considered the addictive quality of seizure? Such appears to be the case in self-induced photosensitive seizure known as Sunflower Syndrome, a decades-old mystery.

Some epilepsy drugs are being used to treat drug addiction. Seizure is also a well-known danger in drug withdrawal, especially alcoholism. Are epileptics more prone to drug addiction and alcoholism?
http://www.nature.com/news/2008/080528/full/news.2008.859.html

The same pathways are being studied in epilepsy, obesity, alcoholism and drug addiction, specifically H3 histamine receptor blockage including hypothalamic inflammation.
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0006004
Downstream the problem affects the pancreas:
http://www.jbc.org/content/early/2011/01/21/jbc.M110.173021

This video is quite disturbing, showing a child not in control, a self-induced form of perverse pleasure based on light:
[ame]http://youtu.be/wVYTstTC1Wg[/ame]

Here's the page where I found it; apparently neurologists were puzzled, calling it just a habit. I wouldn't be at all surprised if this child also suffers gastrointestinal disorder as root cause of the problem, the gut-eye connection:
http://www.tourettesyndrome.ca/showthread.php?5792-Light-induced-tics
 
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kirsten said:
Remember that seizures are exacerbated by anything that alters health even slightly. Where weather is concerned, I personally suffer from low blood pressure as a result of dehydration on hot days, and this worsens my seizures. When I keep myself hydrated with Power aid and rehydrate, I'm fine. Anticonvulsants sometimes cause severe electrolyte imbalances that can certainly cause seizures. I suffered from SIADH hyponatremia as a result of tegretol for three months. If your daughter is drinking a lot of fluids and taking one of the first line anticonvulsants, this could be the problem that is making her seize in hot weather. A sodium level will tell you if this is the case. Climate can have a range of effects on health. Some people suffer from seasonal effective disorder as soon as spring begins. The stress involved could worsen seizures. It would probably be enlightening for you if you took your daughter for a general check up on one of those bad days. Often, when background issues worsen seizures, it's a cinch to fix them.
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Yes, Kirsten, some AEDs do cause electrolyte imbalance, which can trigger seizures. Our son is on Zonegran (and also the Ketogenic diet), and both of these can cause metabolic acidosis (which is a tendency for him), not to mention his chronic diarrhea. Jon gets his electrolytes checked at least monthly (and usually every 2 weeks), and is examined by a physician about every 2 to 4 weeks (because he's quite medically fragile right now he makes the rounds between neurologist, pediatrician, nutritionist, GI doc, and Endocrinologist). He was also recently hospitalized for 3 days during one of his "bad days." Drinking lots of fluids is actually a treatment for acidosis. He also takes a "buffer" of "Cytra K" (potassium and citric acid) and a little baking soda.

I wish it were a "cinch" to fix these seizures.
 
kirsten said:
Reading all you have said about photosensitivity has left me a little confused. I am extremely photosensitive, but only to flashing lights. Do those who are sensitive to flashing lights also respond to sunlight in the same way?
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Kirsten, in our experience, it isn't the sunlight itself so much as the sunlight reflecting off of water -- so it has a sort of dappled effect or flashing. Just being out in the sun doesn't seem to affect Jon.

Others have reported that when the sun is filtering through the trees that this can trigger seizures -- once again - a kind of flashing effect.

Jon also frequently has seizure triggered when watching TV (which is a kind of flashing or flickering light). He does better with a small TV screen and sitting at least 8 feet away.

However, we have have noticed that a certain intensity of indoor light, even when not flashy, will trigger seizures in Jon (we haven't seen this happen with the sun). This happened one time in the mall, where there was a really bright light over a tea kiosk, and he fixated on that for a couple seconds, then had a seizure. He also frequently has a seizure in one room of our house where the overhead lighting is rather bright -- it isn't flourescent lighting, but rather a certain type of (really expensive) lightbulbs.
 
Keith -- regarding self-induced seizures -- we have noticed that a couple of times Jon seems to induce a photosensitive seizure -- such as by fixating on a bright light or walking up to the TV screen, so that he's only inches away. (In fact, when he's watching one of his DVDs, I'm sitting with the remote control in my hand, so if he walks up to the screen, I put the show on pause).

But is he really self-inducing, or is it more that the bright light or the TV screen is capturing his attention to the point where he stares at it?

In the past, Jon tended to avoid activities that induced seizures. We finally figured out that swimming in cold water (or even drinking ice water) could trigger a seizures. Well, he got to the point that he no longer wanted to go swimming or even take a tub bath. We gradually reintroduced swimming, but only on very warm days when the water was very warm, and then immediately wrapped him in a bathrobe when he got out.

So...it's hard to figure out why a child would induce a photosensitive seizure -- they certainly aren't pleasant experiences!
 
Some lifestyle nips and tucks are remarkably effective for me, but other issues have certainly been a terrible struggle to fix: the hyponatremia turned by life into absolute disarray and resisted treatment for ages. Finding the right medication has also been a decades long road that I haven't reached the end of quite yet.

The smaller, simpler things I have found immensely helpful: I had a PC made for me that has been specially rigged to improve the flashing problem of an ordinary television or monitor. I watch everything on it. I wish i knew all the ins and outs of how the technician achieved what he did. I do know that the monitor, cord and graphics card are the main factors they changed to reduce the flashing. I also took the LED lights out of my home and replaced them with halogen. Their flashing was never apparent: One thing to keep in mind is that flashing is not always noticeable to the eye, but it can still have a major impact on seizures. With me, flashing lights produce seizures in me reliably enough for me to remove them from my home entirely.
 
Karen, when I was a child I would have seizures after swimming. My neurologist later told me that this fact pointed to his theory that I had an L carnitine deficiency. He recommended over-supplementation with it, but his dosages were just unaffordable for me at the time. Anyway, apparently the cold is not an unusual seizure trigger.

Epilepsy patients often have autonomic functions during seizures. We walk, talk and fidget during events automatically, without awareness. Perhaps when your son approaches the television screen, he is already seizing, and has no awareness of his behaviour?
 
kirsten said:
Some lifestyle nips and tucks are remarkably effective for me, but other issues have certainly been a terrible struggle to fix: the hyponatremia turned by life into absolute disarray and resisted treatment for ages. Finding the right medication has also been a decades long road that I haven't reached the end of quite yet.

The smaller, simpler things I have found immensely helpful: I had a PC made for me that has been specially rigged to improve the flashing problem of an ordinary television or monitor. I watch everything on it. I wish i knew all the ins and outs of how the technician achieved what he did. I do know that the monitor, cord and graphics card are the main factors they changed to reduce the flashing. I also took the LED lights out of my home and replaced them with halogen. Their flashing was never apparent: One thing to keep in mind is that flashing is not always noticeable to the eye, but it can still have a major impact on seizures. With me, flashing lights produce seizures in me reliably enough for me to remove them from my home entirely.
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Thanks Kirsten -- I hadn't thought about the unnoticeable flashing in certain lights, and didn't realize the difference between halogen and LED lights. I'll have to check out what sort of light bulbs we have in that room downstairs that seems to be the problem, and see if we can replace the bulbs (what we've done right now is covered some of the overhead lights with these Japanese lanterns that defuses the light, and unscrewed some of the other bulbs).

Jon doesn't look at the computer much except sometimes I'll put some video or something for him to watch -- but it has only triggered a seizure once, while the TV seems to be a more common trigger. I usually keep him about 3 feet or more away from the computer screen.
 
Hadn't heard of the relationship between Carnitene levels and cold-induced seizures. Do you remember if your doctor checked your levels back then?

I seem to remember that being one of the things Jon was checked for, and it being ok, but will have to go back and look over his blood work done in recent months.
 
I live in South Africa, so the neurologist wouldn't be helpful to you. It was Dr Giampaolo. I did find a trial about L carnitine and epilepsy though on NCB pubmed website. I can't post the link but if you google it, it should come up.
 
Regarding carnitine, it's known to detox ammonia which can be released from cells by microbes leading to ammonia toxicity associated with seizure:
http://www.ncbi.nlm.nih.gov/pubmed/6462327
http://mmbr.asm.org/content/53/1/85.short

also glutamate toxicity:
http://www.ingentaconnect.com/content/klu/mebr/2002/00000017/00000004/00453513?crawler=true

Here's more reason to consider intermittent fasting using the variation where you allow an eight hour daily eating window such as noon-8pm: ameliorating leptin resistance where leptin is said protective:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2147676/

In eyes, leptin stimulates hormone responsible for reducing inflammation and intraocular pressure (IOP), antioxidant lutein release where optic nerve inflammation may affect potassium ion channels, one possible explanation for photosensitive seizure:
http://www.pnas.org/content/94/3/1023.full
http://www.iovs.org/content/50/2/836.full

Leptin is known to accumulate in ocular tissues. Here's the study detailing fasting and protective effect regarding leptin and lowering triglycerides which contribute to leptin resistance (as well as microbial, gram-negative endotoxins, LPS as cause of leptin resistance and hypothalamic inflammation discussed earlier). They used 16 hour fasting to demonstrate lowered triglycerides (known to clog insulin receptors) and increase leptin transport across blood-brain barrier:
http://diabetes.diabetesjournals.org/content/53/5/1253.full
 
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The problem with intermittent fasting and children (esp. on the Keto diet) is too much of a drop in blood sugar. The typical Keto kid has blood glucose in the 60 to 80 range, so if they don't eat regularly, they can drop down to dangerous levels.

For some inexplicable reason, even when Jon has been in good Ketosis, his blood sugar has been in the 80 to 90's -- this is normal for most people, but for someone who gets almost no carbs, it is quite high. It makes me think there is some sort of underlying inflammation.

His seizures are almost gone -- except that we're now weaning off of Keppra (because of behavior issues), so whenever we take it down a notch, we'll have seizures for about 3 days, and then he'll be seizure free till the next drop in Keppra.
 
I don't know about you but the heat really affects my gait and co-ordination.
I seem to have severe BALANCE issues when it's really hot out or I sweat a lot.

I've read on this forum that some Doctors don't think that heat and/or sunlight have very little to do with seizures.

I've had 34 years of experience with EP (that you can't get from books or internet).
If a Doctor tells you that ~ tell him he's full of s@@@.

Randy
__________________
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
 
Hot,Hot,Hot

Hi Kieth and Karen,
I didn't read all 14 pages of this thread but to get back on topic, I just wanted to add my comment.
I recently saw my neurologist and I happened to mention how the hot weather from last summer was causing me to lose my balance more, my gait was worse and my co-ordination was worse.
His reply to me I found extremely interesting.

He said that when the wether is very hot, it can have a negative effect on your meds and cause you to act like you're drunk because you lose so much of your medication though your perspiration (I sweat ALOT) bringing your blood syrum level down. If my medication level were to be increased, the meds could go toxic in my system causing a whole new set of problems. also increased because I also take meds for ulcerative colitis. Before he changes any of my meds he ordered a special type of blood test that most labs won't do because it's so expensive, "Blood Syrum Unbound Fraction" to see how much of my medication is being lost through perspiration. I'm not totally sure but I think he explained that it shows how much of the medication is actually in the blood and how much is being stored, that's the "unbound fraction". It's a very rare type of test and the tech. that took my blood has never seen this done before. In my 31 yrs. with epilepsy, I've never heard of this before and find it quite interesting. I always knew that you lost some of your medication though perspiration, but not that much, (maybe it's because I perspire more than most people, I also have "hyper hydrosis" which is extreme sweating)

Randy
__________________
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
 
Hi RanMan -- yes, the heat can cause problems with electrolytes, which is already an issue for those on meds like Topomax and Zonegran, as well as those on the Ketogenic Diet for Seizures.

Noticed that you also have Ulcerative Colitis. The miles of postings here have a lot to do with the link between intestinal ailments and seizures, especially (but not limited to) photosensitive seizures. It will take FOREVER to read through them, but you might want to think about the Selective Carbohydrate Diet -- as a way to get relief from both the colitis along with the seizures. You're probably already know about it, but just in case, here's a link to the "Breaking the Vicious Cycle" website which gives a list of "legal and illegal" foods.
http://www.breakingtheviciouscycle.info/legal/listing/
 
This recent presentation seems good with focus in the beginning on history of diet and gut:
[ame="http://vimeo.com/55453574"]Elizabeth A. Thiele, M.D., Ph.D.—Dietary Therapy: Role in Epilepsy and Beyond on Vimeo[/ame]

Ketogenic diet success may not be about addition of fats or raising ketones. Perhaps it's more about lowering carbs which feed microbial overgrowth. Gut origin of seizure is barely on the map where neurology treats the problem from the neck up. It's generally believed increased ketones are protective, but the opposite may be the real truth. Here's a study showing KD over time produces an inverse relationship: "Children who were on the ketogenic diet for longer periods of time had a significantly lower fasting breath acetone." Study authors had no clear explanation for this "significant inverse association" because they weren't factoring-in the well-known reason: microbes make acetone. Acetone, a basic ketone, is not thought to be so toxic, yet it may be responsible for lowering seizure threshold. For example, when starved clostridium (high in autism where a large percentage are epileptic) are busy trying to survive leading to temporary increased ketones such as acetone, they aren't in toxin-producing mode where clostridium toxins are a known cause of seizure. There may also be a factor of other types of bacteria (gram-negative sulfate-reducing?) oxidizing butyrate produced by clostridium, perhaps too much. With all the debate these days over low carb and safe starch, it's surprising people aren't factoring effect on microbes, especially regarding diabetes.
http://www.nature.com/pr/journal/v52/n3/full/pr2002204a.html

In a study of the Modified Atkins Diet where carbohydrates are restricted to 10 g/day for the first month, they state: "Our results also question whether ketosis is as important as previously reported. Eighty percent of children with a loss of large urinary ketosis over the study period did not lose seizure control, and the same percentage with trace or zero ketosis at 6 months were still improved."
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2006.00438.x/full
 
Sunshine and seizures

Great info. Kieth, but what does all this have to do with "sunshine and seizures".
 
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