Epilepsy Talk
Are You One of the 80% with Seizure Cycles? | September 14, 2018
Seizures cycles occurred in more than 80% of people with epilepsy, a retrospective analysis found.
These cycles most often were circadian, but also included weekly and longer periods, reported Mark Cook, MD, of the University of Melbourne in Australia, and co-authors in The Lancet Neurology.
“There are patterns to when epileptic seizures occur, but these are hard to recognize unless you collect lots of data,” Cook told MedPage Today.
“The patterns are important across the course of a day, but there are also patterns over weeks and months.”
“While there has been extensive documentation about circadian (24-hour) patterns of seizures, longer cycles have been less frequently studied,” he added.
“We thought that cycles existed in women related to hormones, but in fact they are just as common in men. We don’t yet know what controls these cycles.”
Article by Contributing Writer, MedPage Today
Tags: analysis, documentation, Judy George, Lancet Neurology, MedPage Today, patterns, seizure cycles
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Epilepsy Talk 
At age around 35 my seizure pattern started changing when my 4th ever GRAND MAL seizure happened, as I maybe think it all started changing with my 3rd one 4 years before that. After many GM seizures in a 17 year span, after only having 3 in 31 years, 4 after 34 years, something seems to have changed especially after a GRAND MAL happened in 2012 when a bad concussion followed after I fell & hit the concrete floor. I had a little bleeding on the front side of my skull & no real damage was done to my brain according to the CAT SCAN, as 3 months later the MRI affirmed all of that. So why can I feel fine & suddenly with in seconds while just sitting here, I can get like strange feelings in my head, after a slightest feeling in my stomach happens over 50% of the time, but very few times I will have a seizure to happen, as long as I am focused on fighting it off with taking my Lobelia herb tonic, I now am trying BACOPA every other day or so, no every day, as I am very cautious of using too much as I did get a seizure felling when I tried it for the 1st time but no seizure happened from that, so I go to 10 drops of it taking it every other day or 2. Lobelia still is my 911 herb knowing if I still go into it, I will not be in it as long as I would otherwise with out it, Something from that concussion has to have made something change where more seizure activity can happen more often than less, even without the toxic food & drug chemicals that do cause triggers in making seizures happen.
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Comment by CD — September 14, 2018 @ 7:36 PM
According to my research (which isn’t as thorough as yours) Bacopa Leaf has been used for centuries in Ayurvedic medicine as an effective home remedy for epilepsy.
It is a powerful nerve health promoter and is known to enhance memory, concentration as well as treat epilepsy.
It enhances nerve health and protects the neurons against damage, keeping seizures at bay.
Lobelia is an effective herb that was historically used in the treatment of epilepsy.
It has anti-spasmotic action that helps in abating seizures.
But you know this already, as you do so many other things, CD. 🙂
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Comment by Phylis Feiner Johnson — September 14, 2018 @ 9:53 PM
Interesting idea. I’d also suggest (from my own experience over several decades and from comparing notes with others) that the cycles can happen much more slowly- months, even years. For those of us who have kept -and hung onto- reasonable accurate seizure diaries going back years, it’s sometimes possible to see these happening.
I wasn’t too sure from reading the article if this included noticed change in patterns over the years as well. I’ve noticed it in myself roughly every 5 years where it usually gets bad enough to warrant a drug tweak or change. But that might be a case of becoming immune to the meds. Who knows…
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Comment by Katie — September 14, 2018 @ 8:30 PM
In my humble opinion, I think the drugs may be losing their effectiveness over those five years.
Anti-Epilepsy Drugs Lose Effectiveness Over Time…
https://epilepsytalk.com/2018/08/06/anti-epilepsy-drugs-lose-effectiveness-over-time/
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Comment by Phylis Feiner Johnson — September 14, 2018 @ 9:56 PM
Agree Phylis, it probably is more likely to be that with regards to the 5 year changes. Any suggestions on how to convince neuologists that AEDs CAN actually lose their effectiveness- they seem to be the only ones who refuse to acknowledge
it!!
With the mentioned study though, obviously it’s easier to pick up the seizure activity with the deep electrode vs self reporting, as I suspect there’s a lot of activity that goes on that we’re not always able to pick up on or can be total certain it’s sz activity.
But I’ve certain had times over the years where it’s gone “quiet” for a while (a while being 2-4 weeks) followed by several TCs over the next 1-2 weeks. I don’t get partial seizures but goodness knows what’s going on at a sub-clinical level inbetween times. Would you consider that to be a cycle as per this topic?
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Comment by Katie — September 15, 2018 @ 6:14 PM
Could be.
But how often do you have your blood levels checked to see if the meds are at an effective level?
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Comment by Phylis Feiner Johnson — September 16, 2018 @ 11:26 AM
Every 6 months would be good.
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Comment by Phylis Feiner Johnson — September 16, 2018 @ 11:50 AM
Phylis- I hope this shows up under your reply re blood levels- there isn’t a ‘reply’ option there for some reason to carry on the conversation.
Where I live Lamictal levels aren’t routinely done unless there some obvious problems going on. I had one done following a cluster a few weeks ago and it was actually fine, right in the middle of the range as it always has been. Topamax levels don’t exist, nor did gabapentin when I was on that. I gather that’s the case with most of the new generation AEDs?
It would certainly be one useful way to find out if my lamictal levels are fluctuating (even subtly) but it’s just not practical unfortunately. Much easier in dilantin days!
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Comment by Katie — September 16, 2018 @ 5:37 PM
No blood tests for therapeutic levels?
I know, I had blood tests for my Lamictal levels. (They were a disaster. I was at 50%!)
But I don’t know about other meds, Katie.
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Comment by Phylis Feiner Johnson — September 16, 2018 @ 10:14 PM
There is a pattern normally for everything, key is finding it. I can totally relate to the ones that had it once a month. But like all patterns they can change and one must change with them.
I’ve always thought that it’s a build up of something in our bodies that at the point of the seizure, it gets activated. It could be a chemical imbalance, or maybe even an electrical imbalance, similar to how lighting happens, the imbalance of positive and negative ions need to balance things out, this is where it finds the weakest point and it discharges itself by grounds itself, whereby creating the thunder and lighting we hear. Similar to our brain, it’s weak point is were the injury or damage of the brain where the seizures starts at. And when it gets activated the seizures are not pretty. At my last job i worked at a computer farm, lots and lots of computers, well the static electricity was quite high. I remember getting shocked a lot. Now that i’m retired my static electricity activity is noware near what it was and my seizures have gotten better. From once a month to 4 to 8 months without one.
Zolt
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Comment by Zolt — September 14, 2018 @ 11:55 PM
Zolt, actually I thought of you when I read this. And obviously you know a LOT more about it.
I guess that’s why they call seizures “an electrical storm” in the brain!
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Comment by Phylis Feiner Johnson — September 15, 2018 @ 10:01 AM
“I’ve always thought that it’s a build up of something in our bodies that at the point of the seizure, it gets activated. It could be a chemical imbalance, or maybe even an electrical imbalance, similar to how lighting happens, the imbalance of positive and negative ions need to balance things out, this is where it finds the weakest point and it discharges itself by grounds itself, whereby creating the thunder and lighting we hear.”
Zolt, great analogy. I’ve always likened the buildup to a pressure cooker that’s about to blow, and I’m not going to feel better till I have the seizure. In fact, about about 3-4 days of a build up I actually WANT the TC just to get it over and done with and stop climbing the walls! Many people I”ve talked to over the years have similar experiences and also wonder about some sort of electrical buildup well it makes sense when you think about about the brain electricity connected to E? Given I start getting that build up after 2 weeks seizure free I really wonder if I’m someone who just HAS to have a TC on a regular basis to “clear” excess electricity from my system. Does that make sense or even seem reasonable?
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Comment by Katie — September 15, 2018 @ 6:23 PM
Is there a site for people with Siezure disorder i learned over 40 brain operations caused my Siezure. From Russell R Hanawalt my email is rusty.hanawalt@yahoo.com.
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Comment by rusty.hanawalt@yahoo.com — September 15, 2018 @ 11:39 AM
This is a website for seizure disorders. But you might try Facebook, there are dozens.
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Comment by Phylis Feiner Johnson — September 15, 2018 @ 12:34 PM
I do not have epilepsy, but I have a son who does. So I’m just an observer in this. Son’s seizures appear to be well controlled by medication. He hasn’t had one for two years now. But there are cycles of migraine headaches and/or depression. They seem to be connected to the cycles of the moon (full moon being the worst). But it doesn’t happen every month, so it could be coincidental. Weather changes seem to influence migraines and/or depression too.
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Comment by Martha — September 17, 2018 @ 12:25 AM
I think your hunch about barometric pressure is on the mark.
Weather differences such as sudden changes in temperature, dark skies, thunder, or bright, hot sunlight and humidity may be a definite trigger for some.
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Comment by Phylis Feiner Johnson — September 17, 2018 @ 12:21 PM
Weather- definitely. Atmospheric pressure drops also cause other health related problems..
The weather bureau should hire epileptics to make forecasts and throw away their barometers! 😉
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Comment by Karen — October 13, 2018 @ 11:07 PM
LOL! I agree. 🙂
Another barometer I have is a scar that throbs when a storm is coming.
Why Does Pain Get Worse When a Storm Is Coming?
https://psychcentral.com/blog/why-does-pain-get-worse-when-a-storm-is-coming/
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Comment by Phylis Feiner Johnson — October 14, 2018 @ 10:49 AM
I’ve started to write down everything down….and over a year I want to look into it and see if there is a pattern. I’m so surprised to tune into this page and find this article when I was thinking around the same lines.
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Comment by GhostWriter — September 19, 2018 @ 4:39 PM
Great minds think alike! 🙂
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Comment by Phylis Feiner Johnson — September 19, 2018 @ 7:04 PM
This is something JUST happening to me, I thought important enough to share.
I was eating a couple slices of pizza and drinking *COKE. All of a sudden, my head is “Ringing Off The Hook!”
Question: Does anyone else have “ringing in the ears,” and if so, do they “trigger” a seizure?
Mine do, often! I have 24/7 “ringing in the ears.” But since drinking this *COKE, I had to set the rest aside! I am now on what I call, “Seizure Alert!” The “Noise” is SO LOUD, if I could just get it out of my head and ears, maybe there would be less of a chance anything would happen. I even turned the TV, “OFF.”
Taking pills are one thing. But having to monitor WHAT I can drink or eat? Give me a break.
My breathing is getting heavier. I must go, now. Thanks for your time. “Sign Off”
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Comment by Effie Erhardt — April 5, 2019 @ 6:57 PM
I think it’s probably the caffeine that set you off.
Caffeine stimulates the nervous system.
Adrenaline is released and the liver begins to emit stored blood sugar.
Insulin is then released, and blood sugar drops below normal — a common seizure trigger.
And caffeine can be a “stealth” drug, too.
It can be found as an ingredient in medications, including some antihistamines and decongestants.
I’m so sorry you’re going through this. But sometimes we have to monitor ourselves in unexpected ways. 😦
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Comment by Phylis Feiner Johnson — April 5, 2019 @ 8:59 PM
I read this over again & to see WHO & WHAT condition are similar to everyone else, & they all have something different where no 2 people are the same. There are some things I have saw where daily consumption of drinks & foods did trigger an event, which I have said for over 50 years with my own condition since I can remember the 1st time I made that connection around 5 to 6 years old. I’m no kid or teen where people do not pay attention to what you said then in the 1970’s but people & these neurologists in 2019, they ALL have the same selective hearing problem where this MAJOR ISSUE for us that ”’does trigger or are the root cause/s”’ for many neurological conditions, as seizures are just 1, where doctors say, for the answer, TRY a VNS, or more drugs”. Seems like doctors & medical scientists anywhere but the USA, can do other medical testing & research trials as WHY patterns can happen, yet still NO causes from the world of the MSG’s, ASPARTAME’s NITRATES, NITRITES, & other ways that have affected THYROID health, that definetly affects the IMMUNE SYSTEM, which the BRAIN IS AFFECTED BY, & yet nothing can ever be detected & found to be THE ROOT CAUSE, because there’s a great chance that THE MONEY WOULD STOP or BE LESS OF IT FLOWING IN THEIR POCKETS & BANK ACCOUNTS. It would be easier to list the foods & drinks that are SAFE to eat that are seizure free drinks & foods, than to list all that are TOXIC to all brain health. Since the end of WW 2, this has been a problem, & when this government has passed laws like CODEX ALIMENTARIUS in 1963, & THE DARK ACT in 2016 where EVERYONE is the target who wants ot eat healthier but have NO IDEA what they are eating or drinking, then we KNOW who is FOR US and AGAINST US,which in all of it the FDA USDA, NIH & CDC are not protecting us, & neither is all these neurological advocates for GOOD brain health as the ANA claim they are. Just FOLLOW THE MONEY. ISRAEL may be the place to travel for seeing a brain doctor who treats the brain condition & not symptoms of the problems, as all do in the USA. 58 + years of taking AED’s of every form proves that 7 I still have seizures & 1 or more patterns of them. As I have said for years, THE BRAIN NEVER LIES. When it gets attacked it will tell you, even as the brain never feels pain. It is the most fragile organ in the entire human body as neurologists & people treat it like it’s a toxic waste dump. taking some good Probiotic enzymes & the good bacteria ones too, is just 1 thing to help detox the brain & immuine system of the body, & you will feel better as you eliminate toxic foods & drinks. at the same time.
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Comment by C D — April 6, 2019 @ 8:05 AM
If someone would wave a magic probiotic wand and make me able to eat whatever I want, I’d be happy.
I suppose that applies to whatever I want to think, too.
But wishing doesn’t make it so. And BIG Pharma has other ideas for us.
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Comment by Phylis Feiner Johnson — April 6, 2019 @ 8:34 AM
I am just now reading this article. My son has a pattern. Every 3 years his seizures seem to return and they either make a change in meds or he takes Klonapin for a few days/weeks.
He was seizure free for 3 years and had one in October after drinking a Red Bull and several cokes and lack of sleep.
He has been seizure free since until last night as he had another one.
They are during his sleep.
He has had E since he was 7 and every 2-3 years they return. Each time we think he is done with them and then they return.
If you and those that read this post would pray for him and for the Dr. treating him so we know what to do next.
We will check his Thyroid based in another post I just read.
Thank you for all the information you provide.
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Comment by Tami — April 12, 2021 @ 12:05 PM
Hi Tami. Sounds like you’re going through a tough and frustrating time.
Here are a few lights I can shed upon your situation.
First of all, energy drinks are a big no-no.
Epilepsy and Energy Drinks — Think Before You Drink! https://epilepsytalk.com/?p=11864&preview=true
There are reports of seizures induced by energy drinks. Some believe they’re caused due to the “crash” that follows the energy high. And although there is no danger of over caffeination in one drink, more than one drink can lead to adverse side effects which include nervousness, irritability, frequent urination, and arrhythmia.
As far as nocturnal seizures go, an estimated 7.5 percent to 45 percent of people who have epilepsy have some form of sleep seizures.
Since seizures occur in sleep during the night, it’s often hard to diagnose them.
Not that it explains it or is of any comfort.
Does your son have regular blood testing to check the efficacy of his meds?
I think thyroid testing would be a good idea, but please, tell him to stay away from those energy drinks. They’re evil and they can even kill.
You are in my heart. Don’t give up.
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Comment by Phylis Feiner Johnson — April 12, 2021 @ 12:25 PM
Thank you.
He has his levels tested every 6 months. So he is due for one which we will have tomorrow.
Today we saw his homeopathic Doctor and he said his pituitary and hypothalamus was showing up. So I think we will ask for a Thyroid test just to see.
I appreciate all you have done for the E community.
On a side note, he told the girl he was dating about his E this evening. Praying she doesn’t decide it’s too much for her. Since he hadn’t had a seizure in so long, he wasn’t planning to tell her anytime soon.
Thank you for your prayers and encouragement.
Tami
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Comment by Tami — April 12, 2021 @ 11:57 PM
Tami, I had a flaming seizure on my first date with Arthur. (So much for full disclosure!)
We’ve been married for 41 years!
Take heart. Where there is life, there is hope. Where there is hope, there is love.
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Comment by Phylis Feiner Johnson — April 13, 2021 @ 9:10 AM