Epilepsy Talk

Forecasts of Epilepsy Seizures Could Become a Reality | December 19, 2020

By Diana Kwon — Scientific American, December 2020

For people with epilepsy, not knowing when their next seizure will hit can be psychologically debilitating. Clinicians have no way of telling people with epilepsy whether a seizure will likely happen five minutes from now, five weeks from now or five months from now, says Vikram Rao, a neurologist at the University of California, San Francisco. “That leaves people in a state of looming uncertainty.”

Despite the apparent unpredictability of seizures, they may not actually be random events. Hints of cyclical patterns associated with epilepsy date back to ancient times, when people believed seizures were tied to the waxing and waning of the moon. While this particular link has yet to be definitively proven, scientists have pinpointed patterns in seizure-associated brain activity. Studies have shown that seizures are more likely during specific periods in the day, indicating an association with sleep–wake cycles, or circadian rhythms.

For further information, click on: https://www.scientificamerican.com/article/forecasts-of-epilepsy-seizures-could-become-a-reality/?utm_source=newsletter&utm_medium=email&utm_campaign=today-in-science&utm_content=link&utm_term=2020-12-18_featured-this-week&spMailingID=69382265&spUserID=NDg0NzkyMzY2MTY1S0&spJobID=2022533186&spReportId=MjAyMjUzMzE4NgS2

 


27 Comments »

  1. Hi Phylis,
    I noticed that a lot of mine would come around the full moon, which ironically would sync up with my period. There may be something to this. Thanks always for everything you share!

    Liked by 1 person

    Comment by Mary Ellen Gambon — December 19, 2020 @ 12:13 PM

    • Mary Ellen, There definitely is a relationship between a woman’s hormonal levels and seizure activity. The Epilepsy Foundation’s website may still have info available to the public re this. Take a look!

      Liked by 1 person

      Comment by Lisa Lindahl — December 19, 2020 @ 12:33 PM

    • Boy, Mary Ellen, that sounds like a double header to me.

      If you could predict your catamenial seizures, wouldn’t that be wonderful.

      On the other hand, you have fair warning with just keeping track of the calendar.

      Like

      Comment by Phylis Feiner Johnson — December 19, 2020 @ 12:33 PM

  2. Reblogged this on Disablities & all sorts of Mental Health Issues.

    Like

    Comment by Kenneth — December 19, 2020 @ 12:23 PM

  3. Oh yeah! My mom would always dread the full moon. But now that I am of a certain age, I don’t know what the future will hold. It’s been an interesting journey.

    Liked by 1 person

    Comment by Mary Ellen Gambon — December 19, 2020 @ 12:41 PM

  4. Interesting and looooong!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 19, 2020 @ 12:47 PM

  5. This year 2020 has been the worse for me with 7 GRAND MALS, which having 1 GRAND MAL is nothing to laugh about for anyone. Believing & saying what I have said & what I am doing now to NOT eat a particular brand of what cereal that I THOUGHT was a safe food for me to eat, I started to think & re-read what was in this cereal I have been eating in 2019 & all of 2020. Then I wondered IF THAT CEREAL with NATURAL FLAVOR in it, that is AKA MSG, for the limited traces it has, & IF over time of 60+ days I am having GRAND MALS then I have to change what I eat like NOW, so it has been this month as I am hoping & praying now for the 1st 2 months of 2021 & the 1st 2 seasons of 2021 will stay seizure free as long as I do not eat the SIMPLY NATURE brand of cereal. I never thought that NATURAL FLAVOR was any EXCITOTOXIN as such had been in SIMPLY NATURE foods of any type, but from now to JUNE 2021 I am not buying it as I am now sending this all to a food bank or to the church I attend, as what I know is in this cereal is nothing that compares to all of the Proctor & Gamble foods around the world. All to say YES,, I can easily predict a GRAND MAL after I would ever have KRAFT, CAMPBELL’s McCORMICK foods & others alike, but when you 1st notice NO NATURAL FLAVOR when you start buying a so called SAFE FOOD, & then later see that NATURAL FLAVOR had been ADDED, you instantly hit the emergency brake & STOP all harmful brain activity the best you know how, & STOP the digestion & buying of toxic foods that destroys brain chemistry. Really since NOT EATING Simply Nature cereal, I am more at ease with any to NO doubt when or IF I am on pins & needles wondering IF or WHEN the next BRAND MAL will happen, Also to mention I have not been told by my neurologist that IF I GET A VNS, that then after it is all ready to be set & trace all seizure activity & keep my brain chemistry stable & normal, I have never been told that I can eat all of the foods & have deprived myself that I like but do not eat them knowing a GRAND MAL WILL be promised to be in at least 36 hours later, after having so many of them that I have not eaten for decades now, that 1 GRAND MAL can happen 36 minutes later, instead of 36 hours later. All of this IS related to the bible verse MARK 9:29, This kind can only be healed by prayer and fasting. So it seems to be for me.

    Liked by 1 person

    Comment by James D — December 19, 2020 @ 1:24 PM

  6. makes me think of my father…………….My mother suffered arthritis and headaches; I dealt with my epilepsy.

    My dad used to remark about Mom and I complaining about our aches, pain, spells, etc. Finally he realized whenever we were not feeling at the best, he’d pipe up and say, ‘well, what’s the weather going to do’? Funny, but were were right at least 75% of the time! We always said we should have applied for jobs at the weather bureau…..

    Liked by 1 person

    Comment by Karen — December 19, 2020 @ 7:00 PM

    • Believe it or not, barometric pressure can trigger seizures.

      Weather differences such as sudden changes in temperature, dark skies, thunder, or bright, hot sunlight and humidity may be a definite trigger for some.

      So, it only stands to reason, you were a built in weather forecaster, for better or for worse.

      Like

      Comment by Phylis Feiner Johnson — December 19, 2020 @ 8:43 PM

      • This is so true! I have horrible arthritis attacks when it is about to rain. And I have had them since I was 14. Everyone says, “You will understand when you get older.” Try knowing for 35 years. Same with seizures.

        Liked by 1 person

        Comment by Mary Ellen Gambon — December 19, 2020 @ 9:15 PM

  7. That’s what I hate about having this, we cannot live a normal life. I feel I am better off just giving up, better off dead. I have had a few brain surgeries, shunt surgeries and always have headaches as well. I have nothing to live for. Is this quite normal for people who go through this to feel like this?
    What does one have to do to feel better?
    By the way I am working 7 days a week.
    Merry Christmas to everyone!

    Liked by 1 person

    Comment by SAM — December 20, 2020 @ 6:39 AM

    • Sam, I think we all feel useless and depressed at some time.

      I tried to kill myself. (I wouldn’t recommend it.) But, of course, my life was “saved” and I trudged on as before.

      Remember despite how you feel, you are loved and cared about by many, which in itself is a reason to live.

      Take heart in that and maybe consider cognitive therapy. I’ve been in therapy for years and it’s done a world of good for me. (It’s my therapist who saved my life.)

      BIG Hugs to you.

      Email me if you need to chat. pfj@pfjohnson.com

      Like

      Comment by Phylis Feiner Johnson — December 20, 2020 @ 9:49 AM

  8. I had a labrador service dog that let me know in plenty of time, so that I could get to a safe place. The dog went on to my daughter who also has seizures after her service dog died. He continued to alert her for seizures until his death at 14 years old. She now has another labrador service dog that alerts. A dog cannot be taught to alert for seizures, they either will catch on or won’t. I wish everyone could have a dog. I don’t have one now. They really do predict seizures, and life is so much more livable.

    Liked by 1 person

    Comment by Nancy — December 20, 2020 @ 10:16 AM

    • I agree totally Nancy. But not everyone can afford them. And if you get an already trained service dog, it can be around $20,000!

      As for being learned to predict seizures or not, a lot of it is innate, then the rest of the training is just like obedience training.

      I recently met a mother and daughter team who participate in a wonderful organization called Canine Partners for Life.  http://www.k94life.org/html/seizure_alert.htm
      The daughter has intractable epilepsy and has an uncountable number of seizures per day. (She also volunteers for the EFEPA.)

      This is an excerpt from their brochure:

      “Seizure alert dogs are able to predict seizure activity anywhere from several minutes to an hour before the seizure occurs.

      This is a natural instinct, or ability, which some dogs are particularly inclined to act upon and it is CPL’s job to select those dogs in our service dog program who demonstrate this characteristic.

      The actual ability to detect is not trained by our staff, but is instead positively reinforced when we see the dog exhibiting behaviors indicating their awareness of upcoming seizure activity.

      We are unsure how these dogs know that a seizure is approaching.

      Most likely, through its sense of smell, the dog is detecting the chemical and electrical changes within a person’s body caused by seizure activity.

      The dogs are permitted to alert in the manner most comfortable to them as long as it is safe for everyone involved…”

      Like

      Comment by Phylis Feiner Johnson — December 20, 2020 @ 10:36 AM

  9. $20,000? We didn’t pay anything for our service dogs.

    Liked by 1 person

    Comment by Nancy — December 20, 2020 @ 4:15 PM

    • Yup. Not everybody has your sixth sense or talent. Just call yourself the “dog whisperer”! 🙂

      Like

      Comment by Phylis Feiner Johnson — December 20, 2020 @ 7:37 PM

      • What do you mean by that?

        Liked by 1 person

        Comment by Nancy — December 20, 2020 @ 7:56 PM

      • Did you ever see the “Dog Whisperer” or the “Horse Whisperer”?

        A “Dog Whisperer” is a talent a select few people have — to be able to communicate and interact with dogs in a natural way — the way they communicate with each other.

        What is a Dog Whisperer? https://www.sitdropstay.com/dog-whisperer/

        Like

        Comment by Phylis Feiner Johnson — December 20, 2020 @ 8:22 PM

      • Well that took an interesting and somewhat uncomfortable turn… I just wanted others to know how helpful seizure alert service dogs can be at predicting seizures and improving lives, and that they are not financially out of reach. They are obtainable through non profits throughout the country for free or for small fees. They are out there, you just have to be persistent and patient in finding them.

        If I had $20,000 (which I don’t) to spend on a dog, he would have to be pretty darn good at whispering back.

        Liked by 1 person

        Comment by Nancy — December 20, 2020 @ 9:32 PM

  10. The only suggestion I give is just don’t think about it when will be the next seizure, just lived the life little-by-little and enjoy to the fullest

    Liked by 1 person

    Comment by Lesiel — December 20, 2020 @ 10:03 PM

  11. Hey Nancy, can you recommend one of these non profits where one can get a service dog? I would love to get one.

    To me predicting seizures would be great, but does that just postpone the seizure for a couple of days? Or does the seizure build up to be even stronger when it does break through.

    Liked by 1 person

    Comment by Zolt — December 21, 2020 @ 7:15 AM

    • Zolt, I think that predicting seizures is an event by event process.

      Like

      Comment by Phylis Feiner Johnson — December 21, 2020 @ 10:06 AM

    • Hi Zolt!
      A well known organization is called Canine Companions for Indepedence, https://www.cci.org . They have locations throughout the country.

      We had gotten our dogs from a program in Colorado called Gap Service Dogs, https://www.gapservicedogs.org .They have their own dogs, but they also work with the owners own dog if they feel the dog is up to it.

      Here is a another helpful link. https://www.rover.com/blog/getting-a-service-dog/

      Not every organization is easy to find. What I suggest you do is to start with contacting organizations in the above links, even if you don’t live nearby or don’t think you would qualify for their program. It’s always best to try to talk by phone instead of emailing if possible. Let them know your situation and ask them if they can refer you to another program that might work out for you.

      I am leary of programs that require you to pay extremely large amounts or collect large donations to cover the price of the training of the dog. When organizations that thouroughly have their hearts into their cause, they get funding to further their work for the overall good by being a nonprofit. They qualify because of what they do, and how they do it.

      Liked by 1 person

      Comment by Nancy — December 21, 2020 @ 12:25 PM

    • Zolt, I forgot to mention that when my dog would alert me, he would lay down on the floor, whine, and not budge. He was telling me I had to stop. I stopped, had a seizure, and he would help me get out of it quicker by nudging me and laying on me. He stayed with me while I was sleeping it off. For lighter seizures, I would just touch him and it would fade away. I think it had to do with electrical currents. I don’t know why it worked with the dog, but it gets worse when people touch me. He did not keep them from happening, he made them easier to deal with. All dogs do it differently.

      Liked by 1 person

      Comment by Nancy — December 21, 2020 @ 12:36 PM

  12. A few people I know say they have MORE seizures in those R months of the FALL & WINTER when the weather is cooler & their serotonin levels are lower in the brain. For me here in the last 4 years, it seems to be like that for me, compared to how it use to be in the NO R summer months when I had more seizures / auras every month & the entire summer season, last half of spring & 1sxt half of fall. So HOW do you fix a messed up serotonin level ? I wanted to ask my herbalist that today & forgot to ask.

    Liked by 1 person

    Comment by James D — December 30, 2020 @ 5:40 PM

  13. Oh James, you come up with questions that defy answers. Maybe this article will help, although you probably know this stuff already.

    6 Ways to Boost Serotonin Without Medication

    https://www.healthline.com/health/how-to-increase-serotonin

    Like

    Comment by Phylis Feiner Johnson — December 30, 2020 @ 6:36 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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