The Epilim/Sodium Valproate debacle - Dr. Jim Morrow
HTML-код
- Опубликовано: 28 окт 2024
- I interview Dr. Jim Morrow, a former Neurologist who played and continues to play a key part in the UK Government's "Cumberlege Review" regarding the Sodium Valproate/Epilim debacle. Jim is very cool and despite the key topic, we have a real giggle!
Transcript available here. www.torierobin...
Podcast with Jim: www.torierobin...
To support us & keep our podcast and video interviews going, please donate just £3/month via Patreon: / torierobinson
Follow me on:
Twitter: / torierobinson10
Facebook: / torierobinson100
LinkedIn: / torierobinson10
Instagram: / torierobinson10
Thanks to both Dr James and Torie for this very light and insightful interview.
25:30 Torie asks something like "How are we going to improve things going forward". Has nutrition been considered? If it has, why was it not mentioned? Specifically, a state of ketosis is showing huge benefits - has this been seriously considered (not just scantily brushed off due to ignorance / negligence due to a very poor levels of nutritional training in general)?
29:40 Dr Jim says "I don't know of another drug that is as effective" - What about nutrition (ketosis)?
In general, I find it unbelievable that drugs and surgery are considered without any consideration to teh growing good science based evidence of the ketogenic state.
My father suffered with grand mal aka tonic clonic epilepsy as a juvenile and into his 20s.
He weaned himself off epilim slowly and was able to come off it completely.
He had grown out of his epilepsy it seems and hasn't suffered a seizure since. Despite plenty of alcohol/lack of sleep and the usual triggers.
I had my first tonic clonic/ grand mal seizure 2 weeks ago at 30 years old.
I had only slept for 5 hours and woke up with quite severe myoclonic jerks. I went to work and they persisted throughout the day and I drove to A&E after work and was left in the waiting room for 20 HOURS. This was on a Thursday so either it was unusually busy and their was higher priority patients or they just wanted me to go home.
I stupidly didn't sleep during this time. At some point I became confused, I was forgetting things, stuttering, unsteady on my feet, doing laps of the waiting room and having loads of myoclonic jerks. The nurses were concerned that I had a bleed/bleeds on the brain so I was CT scanned. I was sent back out into the waiting room to wait again but was told that I would need to wait for the morning doctors to come in to write the scan report.
The wait was about 3 hours.
That's when I started having drop attacks where my knees would buckle during the myoclonic jerk.
I sat down for safety and to relax and that's the last thing I remember.
I woke up with a cut on my nose, two cuts either side of my tongue and I had peed myself.
I have been sent away with epilim but I'm starting to wonder if I even need it. I still get myoclonic jerks.
I think the big seizure was due to the lack of sleep and me being determined to stay awake to be seen.
If I had gone home and slept maybe I would never have had the big seizure.
Then again I have been having Neurological issues for a few years now so I think the epilepsy is secondary to whatever the primary issue is
How are you doing now- much better I hope. Curious to know if you stayed on the epilim?
practically untreated epileptic here (only had one EEG and neurologist appointment in the last decade), because of specialist waiting times and my own laziness (missing appointments).
i have been on carbamazepine for 10 years and epilim for about 6 months because i had some pretty bad seizures earlier this year.
in the last 6 months especially my head is jerking backwards on its own literally hundreds of times a day (probably more on some days), seems like it happens every time i 'zone out' which happens a lot.
my eyes are doing something weird too, like going cross-eyed or rolling back in my head but it happens too fast to tell (whole thing only takes a split second).
the epilim or recent seizures absolutely made it worse, but it happened before too (leading up to a 'breakthrough seizure' in january).
@@laceyrose4963 I transitioned to Episenta slow release, as my sleep-wake cycle got reversed post-seizure, meaning that I wouldn't be taking the epilim at regular intervals. I now take 600mg Episenta every night at bedtime. Haven't had any other seizures. But have plenty of myoclonic feelings. Not like before where it felt like a snapshot of time went missing and my arms would jerk. But it just feels like there is all kinds of weird electrical activity going on in my head. Which seems to be worse when tired, or moving around. Almost like my visual perception is delayed or something. Sometimes I can feel jolts going down my neck and arms when laying down. I get frequent headaches too. All in all I am wrecked lol
don't have epilepsy but used to have myoclonic seizures when I'd spike a high fever with an ear infection etc. and the doctors wanted to put me on Depakote but my parents said no and were threatened by the nurse with having a Chins petition levied against them for refusing to put me on the drug/in the testing group because I'd already been slow due to lack of Oxygen at birth
Thank you for this brilliant interview. I have had the privilege of having been cared for by Beth during my pregnancy whilst on epileptic drugs and she was, and continues to be wonderful. If only we had more funding for more wonderful epilepsy nurses right across the UK.
That’s so lovely to hear Joanne! I completely agree with you re the UK needing more epilepsy nurses!
I'm delighted to say I'd already had my children when put on epilim but it turned me into a huge lump shaking fat and I eventually lost my hair as well. My weight doubled in the first year I was on them and that cost me my gallbladder. I was on them for more than twelve years because the nurologist refused to take me off them. I wish now, that I'd thrown them in her face.
Because my gallbladder was removed and my thyroid had been slowed I couldn't lose the weight after I was taken off them, no matter what I did until I was put on meds for the thyroid twenty years later.
I've spent the past five years tearing myself to pieces with Urticuria. I'm on three drugs and don't know which one or all three could be causing it.
Thankyou. Just shared your video far and wide:
Xx
Glad you liked it, thank you!
I heard people use this drug to reverse epigenetic damage. Like people with post drug syndromes. Is that possibleV suffering from post fin syndrome
@torie Robinson - what device are you referring to exactly at 20:11?
Btw thanks for your work!
Oh, it's video telemetry! Which is the fancy term for video EEG. :)
And thank you for the thanks! It means a lot!
I use Epilim EC500 . What are the negatives for men. I have been using them since 2011 after my double bypass heart operation. What would be the reason for this medication?
Some info on alcohol and sodium valproate would be useful.
❤Amazing 😊😊😊😊😊😊
Jim is one top person isn’t he!! 😀
Hi is it easy to exercise on Epilim? Do you still get endorphins while on this medication? Thankyou
Hi, I take epilim. exercise makes me feel amazing its a huge part of my life. However drinking alcohol a different matter. I turn into a complete Psychopath when I drink alcohol on it.
still on it?@@jayeye89
Only epilim worked for me but I won't live with that drug. I'd rather live with the fits.
You don't send rats and mice to school and certainly not to uni.
I would like to talk to you some time
Sarah mckeating
Worst drug on planet