Epilepsy Talk

It’s YOUR Turn! | November 1, 2017

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  1. Input please I need to come up with something brief to read over the PA system during my sons high school football game this Friday about epilepsy awareness


    Comment by Angela Obrien — November 1, 2017 @ 5:02 PM

  2. Does your office address the exploitation of epileptic children for unauthorized covert lobotomy and brain implant experimentation? Such research which equates with CIA MK-ULTRA Manchurian Candidate developmental research, along with the NSA “Remote Neural Monitoring” program. which acts as another form of Government secret surveillance. Even suggestion from a UFO researcher, that considering al the secrecy on these 43 metallic implants in the cerebral cortex, they may have originated from the 1947 Roswell UFO crash in New Mexico. You never know. There has been no consent, nor explanation for this implant research. The HSC Patient Advocate informs me that since I’m a victim of criminal assault and battery, she could not intervene in fear of losing her job, and further informs me of a “on-going problem”, and I was encouraged to disclose this hidden child abuse. I’m wondering if your office is aware of a lawyer that can address this covert human experimentation, that is being sanctioned by the Ontario College of Physicians and Surgeons, Ontario Health Professions Board, all police, Ontario Patient Ombudsman’s Office, Children’s Aid, and government officials. What’s going on at the Toronto Hospital for Sick Children is no indifferent than the child abuse in Quebec, where during the fifties, over 100,000 DuPlesiss orphans were exploited for CIA MK-ULTRA LSD, and lobotomy research. Please check out my web-site for further info, and thanks advance for your consideration. Terry http://www.thewhyfiles.net/mkultra4.htm#update http://www.ontariocourts.ca/decisions/2000/july/parker.htm


    Comment by hscguineapig414895 — November 1, 2017 @ 5:24 PM

    • Terry, I have no office. It’s only me. I wish I could have changed history — and the present. But I sadly don’t have that power. 😦

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 1, 2017 @ 5:58 PM

    • “We cannot afford to be complacent while any individual’s rights are being denied or abused”-JFK Dear Phylis, update on my previous post. In my medical records from Sick Kids, there is a pathology report outlining various brain tissue resections from my person, along with another sheet, of a diagram of a “left temporal; lobe”, which is not mentioned on my pathology report, therefore, not from me. Not difficult to realize that a covert brain tissue transplant took place, yet more disturbing, where this brain came from. The only person on the planet, whose “left temporal lobe” is unaccounted for, is JFK. This explains all the secrecy, concealment, and major damage control, surrounding JFK, and Neurosurgeon Dr. Harold Joseph Hoffman. Thing is, there’s no office to address this serious breach? I’m always reminded. “The very word secrecy is repugnant in a free and open society”. Check Terry Parker Jr on Facebook for further info.


      Comment by hscguineapig414895 — December 14, 2017 @ 8:40 PM

      • I have checked Terry Parker as you previously suggested and it’s quite true.

        What happened is a travesty, nothing that can ever be recovered or remedied.


        Comment by Phylis Feiner Johnson — December 15, 2017 @ 8:59 AM

  3. Thank you.


    Comment by Gill Graham — November 1, 2017 @ 5:27 PM

  4. Well I would like for some major serious study done at JHU & NIH in Maryland to get the MSG’s & other excitotoxins out of our AED’s, then work to get them out of the foods & drinks that I know causes GRAND MAL seizures. Just DO THE MATH & look at all the increased diagnosis of people with EPILEPSY since 1975 when the MICROWAVE was made safe by FDA to use & ASPARTAME in 1981, when they claimed it was safe to have daily. They alone are more reason to have a mandatory test of GLUTAMIC ACID levels checked for us all, like I was tested as a kid & teenager for GLUCOSE TOLERANCE TEST for either 4 or up to 10 hour days & fasting all that time not eating any foods or drinks to prove ”nothing then” that now after 45 years I still have GRAND MALS. I am one of many where FDA, & USDA with CDC who do not care what they people want as far as living a seizure free life. If that would happen, Who would have to take AED’s that do not work ? There should have been something in these past 57 years, where I could have today, take a pill or a liquid form of drug or supplement to KEEP GLUTAMATE & GLUCOSE LEVELS IN MY BRAIN NORMAL. When fried tomatoes WITH SUGAR means no seizure activity, BUT having a tomato or any tomato food product or condiment with NO SUGAR results in a GRAND MAL seizure, What does that tell you ? Come on drug chemical scientists & developers,, It’s not YOU suffering daily with FEARS & TORMENTS where some of us know all of what I just typed as a REALITY where more people than myself suffers like this, BUT I only eat 5% of all foods or LESS & drink GOOD WATER all the time except for milk in 1 to 3 cereals. That’s right, of all cereals 1 to 3 maybe if I am lucky 4, is all I can eat. THE DARK ACT law, now is only making those numbers of SAFE FOODS TO EAT less every day. But I know how MSG’s & ASPARTAME’s are thought about in all the medical world people & the cartel in the drug industry. They both are their bread & butter.


    Comment by C D — November 1, 2017 @ 6:05 PM

    • Do anti-seizure drugs have msg. in them? Thanks. Mary Jane


      Comment by Mary Jane Levell — November 1, 2017 @ 6:56 PM

  5. Hello Phylis,
    I have been a reader of your articles for a while now, and enjoy the insight it gives me. I have had epilepsy now for several years it all started when I came down with viral meningitis from which I had a massive seizure. The strange thing is I didn’t have another seizure until years later, about thirteen, I never had any seizures as a child or prior to that time. Doctors “medical” had no explanation why they just gave me Dilantin and that was the extent of it. I had every test possible, but all were negative. The people who truly helped me were Natural doctors who did stop my seizures eventually, I had a few after that, but then they stopped. Another strange thing is I was only having two seizures a year, that’s it nobody can explain why but the Natural doctors suspected some kind of possible food allergy or that I had the virus still in my body, anyways it seemed to stop them mostly. I have now been on Dilantin for five years and it has been five years since my last seizure, my problem that I’m having right now is the terrible side-effects that I am having while on them, I’m having problems remembering things sometimes and I am having a hard time maintaining jobs especially when there is any kind of training involved which has caused me to become temporarily unemployed, that is causing me a lot of stress. I have been experiencing more and more sadness, on and off and shakiness. I have talked to my medical doctor several times about this, but there is no short-term solution other than changing my medication in which my doctor has stated It might not be any better and I can’t drive for three months. The long-term solution in which I would like to try is to take me completely off it, I will have to have several tests to determine if I am able to, depending on the tests, then he will take me off them slowly, the whole process will take about six months and unfortunately at this time I can not do that, very high costs are involved. I don’t know what else I can do at this time Phylis as this situation seems to be getting worse and worse. I’m unemployed at this time now. One last thing I tried to do is to see if I could temporarily go on disability just for the six months that would allow me to get off the medication but to no avail, I’m not eligible according to the legal advise that I have received. Overall, I’m at my witts end and don’t know what else I can do, so I thought I would send you this email in hopes that maybe you would have some advice or other help, possibly something I’m missing. If not, I just wanted to vent, maybe by doing this, it will help my stress. Thank you for letting me get this off my chest and reading this, I feel much more comfortable talking to someone who has the same kind of condition that I do. Take care, and hope to hear from you soon.


    Comment by Kevin — November 1, 2017 @ 6:24 PM

  6. Why are head injuries considered epileptic?
    Maybe something more on head injuries, cures & practices.
    Like one of the definitions of going insane. If you are wondering if you are crazy, “insane” than you may not be. If you don’t know yourself, do others?
    Everyone is different, yet we are the same.


    Comment by Tom Holmberg — November 1, 2017 @ 6:58 PM

  7. Thinking about getting a possible new perspective and a second opinion from another neurologist. My dr is not bad, but neither is my epilepsy. Last month I went in because periodically an electric buzz went through my brain. Not painful or particularly distracting, just very noticeable. More like a tic with internal noise. I shake my head once fast. Neuro said it was not a seizure but take some more lamotragine anyway. Of course I did not. Lamictal is an AED. So now the tic sometimes happens but it bothers me less than taking a drug without a reason.


    Comment by Kate Jacques — November 1, 2017 @ 7:00 PM

  8. I love your research helps me and my groups very much! You work very hard! I have frustrations with cyperbullying and sex harassment. Trying to run support groups, getting information. I found out reading your blog I have StevenJohnson Syndrome! Your information is great. This month your information needs to get out, shared for #NovemberEpilepsyAwarenessMonth


    Comment by jennyme306 — November 1, 2017 @ 7:34 PM

    • And sharing it with your groups is one of the best ways to get it out. Feel free to “borrow” any articles (with source and attribution).

      This website it meant to educate and illuminate. And I’m here to help you in any way I can.


      Comment by Phylis Feiner Johnson — November 1, 2017 @ 7:39 PM

  9. Reblogged this on jennyme306's Blog.


    Comment by jennyme306 — November 1, 2017 @ 7:40 PM

  10. Hello, I’ve had epilepsy since I was 12years old, TBI at 16, and am now 46. I’m going through a really rough time. I don’t have anyone to talk to about my issues, so all I want to do is cry. As I’m getting older, everything is going downhill. My memory is gotten really bad, so it’s hard to keep up a conversation.
    Thank you for letting me vent a bit,


    Comment by Amy — November 1, 2017 @ 8:11 PM

  11. I already had my vent on another thread and I thank you for allowing me to do so.

    The last drug I was on was sodium valporate,after the horrendous time I endured on tegretol and Keppra I researched it it can damage your liver so I decided it was’nt for me although I was seizure free on it.

    I found a natural remedy called epistill it’s in concentrated form and I take a few drops every morning,it works for me and none of the usual side effects that you get with anti-convulsants.
    I have none.

    I know the docs don’t recommend the keto genic
    diet for adults,but when I stopped all my meds I tried it.i had no seizures.

    In the UK docs don’t even recognise it.

    I’m seizure free now and have been for a number of years,listening to docs nearly took my life,so I took control and gave myself a seizure brain fog free life.

    I know this won’t work for everyone but after being labled mentally ill and attempting suicide many times I had to take charge of my condition.

    I’m so glad I did.


    Comment by Berenice John — November 2, 2017 @ 2:44 AM

    • Good for you for being so proactive!

      Here’s a Keto book that may interest you:

      Best Keto Cookbook 2017 – Over 370 Amazing Keto Recipes


      Thanks also for the heads-up about Epistill. For readers, it’s available on Amazon in the U.S. as Epi-Still.


      Comment by Phylis Feiner Johnson — November 2, 2017 @ 9:30 AM

    • Thank you so much for posting this! I have never heard of this substance but am trying to find a way to get off Dilantin because, after 28 years, it is wrecking havoc on my body/brain, that I want to live without before I die. Thanks for sharing your triumph! You have given me hope.

      I hope and pray that you are continuing to do well.


      Comment by Angela — January 23, 2018 @ 5:26 PM

  12. My partner has had uncontrolled epilepsy for 33 years (he averages a few seizures a day, about 5 to 6 days/week.) For the last 8 years we’ve been together he has had more seizures and it’s frustrating for both of us. Sometimes I feel I am a trigger for his seizures even though he and others say I am extremely patient and calm. I started a small local group on Facebook called the Coachella Valley Epilepsy Group and often share your writings. You have educated me so very much with your honest broad expertise on the subject and we THANK YOU, Phylis. Any plans for a future book incorporating your columns? It could be directed at so many different audiences from nurses to peace officers, teachers, TSA agents, caregivers, and politicians, as well as those with epilepsy. Love, from Southern California.


    Comment by Paul Harris — November 2, 2017 @ 3:49 AM

    • Thanks for the compliment, but there’s no book in the works at this time. Just good old Epilepsy Talk!

      I looked into a book, but there are so many complications — legal rights, authorization forms, etc. — to avoid the accusations of plagiarism — that it just wasn’t worth it. 😦


      Comment by Phylis Feiner Johnson — November 2, 2017 @ 9:36 AM

  13. According to an article on the “Accommodation and Compliance Series: Employees with Epilepsy”


    there is a section on “Accommodation Ideas for Cognitive Impairments Associated with Epilepsy’.

    Under “Memory”, it states:

    People with epilepsy may experience memory deficits, which can affect their ability to complete tasks, remember job duties, or recall daily actions or activities. This could be caused by a side-effect of medications or from recent seizure activity.
    • Provide written or pictorial instructions or prompt with verbal cues
    • Offer training refreshers
    • Use a chart to describe steps to complicated tasks
    • Maintain, safely and securely, paper lists of crucial information such as passwords
    • Use voice recordings of verbal instructions
    • Provide the employee directory with pictures
    • Use name tags and door/cubicle name markers
    • Provide a building directory or employee directory by name, floor, unit, etc.
    • Label items on the employee’s desk (in-box, this week’s videos, etc.)
    • Use auto-dial phone features to connect quickly to used numbers

    If this doesn’t wouldn’t humiliate, belittle, and depress the person with Epilepsy, I don’t know what would.


    Comment by Paul — November 2, 2017 @ 9:38 PM

  14. Thank you very much, Phylis I will definitely look into all of the sources that you have given me, I think some might be of great help, I will let you know what happens. Thank you again.


    Comment by Kevin — November 6, 2017 @ 2:12 PM

  15. Have been trying to leave post on one of the other topics but it id refusing to “post” Am just trying thi to see if it is just that page.


    Comment by Margaret — November 16, 2017 @ 3:01 AM

  16. will try my original post and see if it works here! Sorry for the lack of continuity.
    Phylis – Great news. I got a call at the house yesterday evening from my specialist, saying that my own doctor had called her with real concerns about how things were with me; so she, after a long conversation with
    me, is admitting me to her neurology ward tomorrow for 4 or 5 days to run a raft of in depth tests – including a lumbar puncture (ouch!!). So, thank you SO much for giving me the encouragement that I needed to insist on more help from my medics!! I don’t know if I will have any internet connection in the hospital but I will keep you up to date whenever I can.

    Thank you again


    Comment by Margaret — November 16, 2017 @ 3:03 AM

  17. Fabulous news. And bravo to you for being so proactive!

    P.S. I’ll be out of town for 4 days, so if you don’t hear from me, don’t worry.


    Comment by Phylis Feiner Johnson — November 16, 2017 @ 12:52 PM

  18. I’m writing this on behalf of my husband – I am the one with epilepsy but I sometimes think he is suffering even more than I do. He is my only “carer” and has no one else at all to talk to, to share his worries and distress with. We live in Europe (Scottish although we live in France just now). My question is “is there any online group which he could join in to share his worries etc. Something that, in particular, would apply to services in Europe. Any suggestions would be welcome – we are “older” – he is a very young 76 but is findng this is dragging him down – my epilepsy is “late onset” so he didn’t have to deal with it when we were younger.
    Thanks folks – Margaret – France


    Comment by Margaret — December 18, 2017 @ 8:34 AM

    • Margaret, in terms of France, specifically, I don’t have the slightest idea.

      You could try the Facebook group 50+ Seizure Seniors Group They have a wonderful moderator — Melissa Bryan — and all groups on Facebook are fairly international. (Just like this site, believe it or not.)

      Let me know how that works for you…


      Comment by Phylis Feiner Johnson — December 18, 2017 @ 10:35 AM

  19. Phylis Feiner Johnson, the 3 most aggravating things for me related to my Epilepsy are the undesirable side-effects of the medication I am taking, the postictal migraines, as well as issues of short-term memory loss. Those are frustrating and really trying to my patience.


    Comment by Jeffrey Liakos — September 9, 2018 @ 3:45 PM

    • Well, at least you’re in good company.

      (Except for the migraines. Those, I think, are their own individual form of torture.)


      Comment by Phylis Feiner Johnson — September 9, 2018 @ 4:50 PM

      • Phylis Feiner Johnson, I know that you have never experienced the postictal migraines. Have you ever experienced the headaches that can happen before an impending Earthquake that some people get?


        Comment by Jeffrey Liakos — September 12, 2018 @ 4:16 PM

      • Thank heavens, NO!!!


        Comment by Phylis Feiner Johnson — September 12, 2018 @ 5:49 PM

      • You are definitely blessed in that regard.


        Comment by Jeffrey Liakos — September 12, 2018 @ 8:03 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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