Epilepsy Talk
Drug Resistant Epilepsy News | September 30, 2019
News of this groundbreaking scientific discovery comes from “zarabia” a member of the epilepsy support board at WebMD.com. It’s very exciting and offers real hope. I think those Brits might be on to something BIG. Read here: http://news.bbc.co.uk/2/hi/health/8385790.stm
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Epilepsy Talk 
WOW!!!!!!! THANK YOU SOOOOO MUCH PHYLIS 😃🦅😇🙏🏼💗😘. I wish EVERY PERSON with this problem HAD HELP ALL OVER THE WORLD!! I hope they come MY WAY!!!!!!! Interesting read as we sit in almost 2ft of snow (in some area and more in others of Southern Alberta, Canada) 😃🙏🏼. Please take care and have a VERY GOOD DAY TODAY AND PLEASE TAKE CARE OF YOURSELF!!!!! 💗💗
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Comment by Kathy S.B — September 30, 2019 @ 11:38 AM
Where there’s life, there’s hope.
Stay warm…and dry.
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Comment by Phylis Feiner Johnson — September 30, 2019 @ 11:46 AM
Thank you 😊. Lol as long as I stay inside 😊
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Comment by Kathy S.B — September 30, 2019 @ 11:47 AM
Hi Kathy, nothing in Northern Alberta yet but saw some crazy pictures from Lethbridge. Way too soon! Take care!
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Comment by Cathy Urlacher — September 30, 2019 @ 11:58 AM
Take care of yourself!
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Comment by Phylis Feiner Johnson — September 30, 2019 @ 12:42 PM
YES IT IS!!!!!!! But HOPEFULLY 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼 it is ALL OVER TODAY!! Lol but then again we’ve had 4 seasons in a day here!! 😂😂. Thank you 😘. Wow i think that’s the FIRST TIME I ever told my husband “OKAY MAYBE it’s NOT A BAD IDEA TO THINK OF A SNOWBLOWER, TRACTOR OR QUAD WITH A FRONT LOADER OR A QUAD WITG TRACKS INSTEAD!!!!! 🤔🤔”. It only took 3 of us to ALMOST SHOVEL the driveway out!! Lol 😂. My husband looked at me and said “OKAY YOUR RIGHT!! It’s a good thing you get an suv with ALL WHEEL DRIVE!!!!! Because you (me Kathy) are NOT SUPPOSED TO SWEAR AND YOU ARE!!!!!!!”. 😂
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Comment by Kathy S.B — September 30, 2019 @ 12:53 PM
It’s been 10 years since this article was published. I wonder what the updates are… if they’ve moved closer in finding out how to change these brain waves…
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Comment by Mai Watson — September 30, 2019 @ 11:49 AM
https://www.uchicagomedicine.org/forefront/neurosciences-articles/2019/may/new-treatment-options-for-people-with-drug-resistant-epilepsy
I have looked and looked and have not found a breakthough more promising than this. 😦
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Comment by Phylis Feiner Johnson — September 30, 2019 @ 11:54 AM
Makes me curious why they can’t work with even electricians? Because it took my “FORMER ELECTRICIAN” (husband) to FINALLY BE ABLE TO PROPERLY EXPLAIN TO ME WHY I HAVE SEIZURE IN THUNDER AND LIGHTENING STORMS!! If he knew that as an electrician then why would the scientific world be knowledgeable about it as well? Could you imagine the possibilities if only they all put their heads together and worked as a team for numerous cures for neurological disorders? Interesting 🤔
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Comment by Kathy S.B — October 10, 2019 @ 3:46 AM
Believe it or not, there are neuro engineers on some of the studies!
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Comment by Phylis Feiner Johnson — October 10, 2019 @ 10:10 AM
I believe it!! I just couldn’t get over how it took my ex election now IT TECHNOLOGIST TO TELL ME THAT AND THE DOCTORS OR NEUROLOGIST AND MEDICAL PROFESSIONALS COULDN’T!! That is SO FRUSTRATING!!!!!
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Comment by Kathy S.B — October 10, 2019 @ 5:22 PM
10 years ago? Don’t give us false hope please.
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Comment by lauraak2 — September 30, 2019 @ 12:16 PM
Research continues but some of the approvals are far away.
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Comment by Phylis Feiner Johnson — September 30, 2019 @ 12:47 PM
It’s not that it’s “FALSE HOPE” it’s being aware of what is out there and how much our scientists are limited to being able to try or even perfect so we have HOPE. This is knowledge now what can be done with it for all people with epilepsy so we have REAL HOPE! 10 years has been a long time to wait for some of us who may fall in that category, but at least we know there’s hope 🙏🏼🦅💗. Now please allow the scientists or neurologists or even epitologists to realize as “epileptics” we may all be in the same boat together. Now please allow countries, doctors and epileptic groups come together as one!! Thank you Phylis for the HOPE!! Anything is better than where or what I knew then and now. 😃💗
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Comment by Kathy S.B — September 30, 2019 @ 2:28 PM
Laura,
If it ain’t for our generation, think of our children & grandchildren who may benefit from these researches, just like we’re benefiting from the research & hardwork of the generations before us, who made it possible to combat & control seizures through medications or brain surgery.
Therefore, anything leading to the right direction in resolving this neurological disorder & medical hardship is highway to remedy, many of us should get involved & support to come to fruitation.
Let’s hope they NEVER stop researching & looking for remedy to this nightmare, Epilepsy.
Gerrie
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Comment by BahreNegash Eritrea — October 1, 2019 @ 5:16 AM
I think that research has made strides in our time. But mostly what has come to the public’s eye are meds via BIG Pharma.
But let’s not forget the VNS, RNS, TNS and other innovations that didn’t exist when WE were younger.
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Comment by Phylis Feiner Johnson — October 1, 2019 @ 9:46 AM
Of course, one of the problems is funding.
* The Federal Government spends much less on epilepsy research compared to other diseases, which affect fewer people.
* Each year the National Institute of Health (NIH) spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy. 😦
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Comment by Phylis Feiner Johnson — September 30, 2019 @ 2:41 PM
Goodevening Phylis 😊. I completely agree with you!! Funny how nobody stops to realize that a simple fall ANYWHERE ANYTIME CAN CAUSE EPILEPSY UNTIL ITS TOO LATE or THEY HAVE A PERSONAL EXPERIENCE!!!!! That hit me today as I was getting chest X-rays, bloodwork and knowing (because I was told by an internal specialist) that it was caused on account of tegretol!!!!! Almost makes me want to go “COLD TURKEY” (pardon the pun, I’m Canadian) off of the medication I’m on now!!!!!!! I apologize for venting. Thank you for for everything and all the information 😊
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Comment by Kathy S.B — October 11, 2019 @ 10:01 PM
Damn drugs. You can’t live with them and it’s unlikely that you can live without them.
I feel for you, Kathy. 😦
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Comment by Phylis Feiner Johnson — October 11, 2019 @ 10:18 PM
I think the hard part to it is waiting for results so I can have a serious talk with my husband and children. Breaks my heart, but young people now a days have values set in a way that completely differ from their parents. That’s what worries me the most!!!!! By the time they realize the value of a mother/father we may not be well enough to make those memories with them 😘.
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Comment by Kathy S.B — October 11, 2019 @ 10:24 PM
Goodmorning Phylis 😊. May I please ask if you’ve ever hear if an epileptic can be weaned off the medication or what medication or plants have you ever heard of in combating the neuropathy caused from the epileptic medication (Dilantin, tegretol, and clobazam)? I was seriously thinking marijuana because it comes directly from the ground or is grown. If it does would that epileptic be able to be weaned off of the medication their on? Thank you and please have a very good day today 😘
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Comment by Kathy S.B — October 12, 2019 @ 10:06 AM
As for marijuana, I don’t have any personal experience.
My husband uses Lydoderm for neuropathy and Gabapentin and they do very little.
In terms of weaning yourself off of drugs, be careful:
The Perils of Discontinuing Your Meds
https://epilepsytalk.com/2019/01/16/the-perils-of-discontinuing-your-meds/
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Comment by Phylis Feiner Johnson — October 12, 2019 @ 10:14 AM
Thank you Phylis 😊. I ended up taking a (non brand name) form of ativan at the ABSOLUTE LOWEST DOSE .05 and oddly all numbing went away and the shooting pain i never used to have on the left side of my head also went away with the ringing, but MOSTLY IT WAS ALMOST AS THOUGH I WAS ABLE TO FINALLY FEEL AGAIN!! Funny how a brand name version of “Ativan” made me crawl the walls and a non brand name never did that!! Thank you 😊
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Comment by Kathy S.B — October 12, 2019 @ 10:23 AM
Generics have 80% of the original formula in them, with 80% of “filler”. That may be why you’re experiencing the difference of effects.
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Comment by Phylis Feiner Johnson — October 12, 2019 @ 11:24 AM
It’s almost like there comes a point in time when even the WORLD GOVERNMENTS, NIH, AND SOCIETY have to realize MAYBE ITS TIME TO CHANGE OUR POISON TO A DIFFERENT ONE OR HELP US SO WE CAN BE WEANED OFF OF IT SO WE CAN LIVE!! For ourselves and our lives and those we love the most!!!!! Because WE WANT TO BE HERE FOR OUR FUTURE WHEN THEY NEED US TOO WITH OUR FUTURES FUTURE!!!!!!! In this day and age there is absolutely NO REASON WHY A PERSON SHOULD HAVE TO POISON THEMSELVES JUST TO BE ABLE TO LIVE!!!!!!!!!!! SHAME ON THEM ALL!!!!!!! All they have to do is just a little shake, bang their head on a headboard, or simply get an illness that leads to epilepsy!! Even THE MOST RENOWNED HISTORICAL FIGURES OF OUR PAST GAVE US LIGHT, POWER AND A LIFE WITH EPILEPSY AS PART OF THEIR OWN LIVES!!!!! I.E. EINSTEIN!!
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Comment by Kathy S.B — October 12, 2019 @ 11:27 AM
Epilepsy Hall of Fame
https://epilepsytalk.com/2009/09/13/epilepsy-hall-of-fame/
Celebrities Supporting Epilepsy
https://epilepsytalk.com/2018/11/02/celebrities-supporting-epilepsy/
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Comment by Phylis Feiner Johnson — October 12, 2019 @ 11:34 AM
Wonderful discovered evidence!
Thanks for sharing.
My son’s epilepsy is caused by DNA sequence tests revealed 1base pair deletion.
But research is advancing for Dravet Syndrome as well.
HOPE us ALWAYS with research and scientist THANKS TO ALL OF THEM TOO!
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Comment by Pam — September 30, 2019 @ 3:14 PM
Yes, thanks to Dr. Orrin Devinsky, tremendous strides have been made for Dravet Syndrome.
We can only hope for more doctors as dedicated and brilliant as him!
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Comment by Phylis Feiner Johnson — September 30, 2019 @ 3:21 PM
This is great news but sadly just like so many
amazing research breakthroughs, we hear nothing further.
Big pharma won’t be able to push their drugs
on us if there is ever really a cure for E.
I have seen so many “new” developments but
nothing becomes of it.
Strange… we have so many announcements of
progress and then nothing happens.
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Comment by Tami — September 30, 2019 @ 3:38 PM
Follow the money! 😦
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Comment by Phylis Feiner Johnson — September 30, 2019 @ 3:46 PM
To gain fair-share of funding for Epilepsy research & remedy from the political administration, powerful vocal voices are needed to advocate for Epilepsy & hold the politicians accountable for Epilepsy patients medical hardships in the ballot box.
Expanding national & international Epilepsy support groups advocating & demanding for Epilepsy research funds can certainly make a whole lot differences than hoping & waiting for political goodwill from politicians least affected by Epilepsy.
Gerrie
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Comment by BahreNegash Eritrea — October 1, 2019 @ 7:40 AM
Right you are! More people need to speak up and speak out and advocate for themselves before we can expect any ground swell of research and dedication to a cure. (If such a thing exists.)
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Comment by Phylis Feiner Johnson — October 1, 2019 @ 9:53 AM
It takes a community to raise a child. Maybe our communities need to remember everyone will ALWAYS BE CHILDREN OF OTHERS!! Even when they are adults. Once my baby always my baby. That’s where some cultures differ. Because I’m my culture (Canadian First Nations people) “it is my job to be there for whatever baby needs me. Even when it’s not my own. It’s my job to always be there for a child and eventually an adult child as well if needed. 😘
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Comment by Kathy S.B — October 11, 2019 @ 10:31 PM
As Crosby, Stills & Nash said:
“Teach your children well,
You who are on the road
Must have a code that you can live by
And so become yourself
Because the past is just a good-bye.”
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Comment by Phylis Feiner Johnson — October 12, 2019 @ 10:03 AM