If you would like to make a consult with Dr Omar Danoun, age 16 years and older, please call or email the International Patient Services at Henry Ford Hospital and get your appointment if you are outside the USA: Office Hours: Eastern time 8:00 am -5:30 pm Mon-Friday, excluding holidays Phone: +1-313-916-8443 Email: InternationalPatientServices@hfhs.org In USA call the clinic www.henryford.com/physician-directory/d/danoun-omar
AGE 30y WEIGHT 120kg AED's that I am using right now : Morning dose: 1 Brevipil 100mg 1 LACOSAM200 mg 1 Zeptol CR 400mg 3 celetoin 100mg Afternoon dose: 1 Brevipil 100mg 1 Zeptol CR 200mg Night dose: 2 FRISIUM 10 mg 1 Brevipil 100mg 1 LACOSAM200 mg 1 Zeptol CR 400mg But still having epilepsy based seizures 😢😢😢😢
In 19 years of my daughter having intractable epilepsy with multiple daily seizures, this drug has had the most profound positive effect in her life. Dramatic decrease in seizures. I’m thankful for it in ways I cannot explain.
Xcopri is a miracle medicine. Intractable epilepsy since 2011, tried vns, and over 20 meds, nothing worked. I'm now on 350mg, got my driver's license back. I was having up to 50 seizures a day. Xcopri was a godsend
I was recently placed on Xcopri. In my third week of titration. Noticed a major difference with my seizures after years of other medicines. Please, contact your neurologist and ask if this drug is for you. 😊 Thank you Dr. Omar for the excellent explanation!
Thanks for explaining this. I’ve had epilepsy all my life and am now on Cenobamate. So far it’s worked better as a combination with my other drugs than anything else
As I was the first person in Canada on Clobazam (the late dr Andermann put me on it experimentally in 1989) my body has adjusted to it where it doesn't assist anymore. I have a VERY strong body for taking medication I presently am on 50mg no problems
I have just started this medicine, in addition of Trileptal and Clobazam. I have epilepsy since I was a child, had a brain surgery, and already tried a lot of antiepileptics. Hopefully, this is gonna help
I've just started Cenobamate at the start of August. It seems to be working well, have had 2 seizures during the night. Usually have 2 seizures during the night everyday. Hope the Cenobamate continues to reduce my seizures. 2 seizures is a lot better than 14.
I wasn’t born with epilepsy, but started having them around age 23. I have been through multiple medications, and am now on briviact, aptiom, and xcopri. I take additional medications, but prescribed through my psychiatrist. I’ve been on xcopri for about/over a year. It has helped, although there are side effects…
My husband has had seizures since 96, has been through pretty much every med. He recently started xcopri....I am afraid to get my hopes up...but I am hopeful.
My epilepitologist put me on xcopria, and even with the max dose, it didn't help. I understand the percentage of patients it helps (21%) and barely slowed done my seizures (partial). The cost is outrageous! But it was worth trying it.
28 years post surgical. Have kept on taking Carbamazepine, Diphantoine, Vimpat but developed auras aswell as absences. On Cenobamaat now for three months 200mg. Am down by 80% on auras, no absences. Unbelievable.
They tried this medication and tried taking me off of Clobazam and Lacosamide, it was terrible. I got to 100mg and I started getting so dizzy and off balance I fell down multiple times in a day. It interacted terribly with other medications. I absolutely don't recommend taking it with Lacosamide if the person taking it doesn't live with another person to monitor them for falls. Just my experience.
Correction: Cenobamate was approved after two Phase II trials and a large safety trial with no large Phase III trials, which is usually required. Ask me any questions you may have about this medicine or epilepsy in general. To learn more about all different antiseizure medications in an easy way: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-TzjmXWBVKTM.html To answer the most important questions about epilepsy: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-E_oSPKPnQUk.html Epilepsy treatment during pregnancy: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-RsE1bUqrt14.html And more in the library
If you fail cenobamate and are not a good surgery candidate, would Neuromodulation or keto diet be the next recommended step? Would be interested to hear any data or results of xcopri + DBS or VNS
Im taken Vimpat and Xcopri right now. When I started the Xcopri I still have seizures but they aren't as bad. I haven't had a seizure so bad that I bit my tongue since I started taking Xcopri. I stay mostly conscious now. My brain damage is on one side and the seizures don't get to the other side of my brain now.
I presently am on the 50mg dose to where I am weaning off my clobazam (I am the late dr Andermann's patient where I was the 1st in North America experimentally tried on it in 1989 post surgically where my body has adjusted to it)2 neuros have been done,where it seems as though control is starting as I only have had one since 12.5mg
I will be put on cenobamate in two weeks. I am on fycompa, tegretol,clobazam briviact.I have been on every other medications none seem to work. I have a vns also.
Thanx doctor this is very useful video. I have one query how come US FDA approved it without 3rd phase trial and is phase 3 trial out ? If yes, then what is the effectiveness of it in phase 3 trial?
The FDA approved it after two phase II trials and large safety trial and did not require large phase III because of the great efficacy. Of course continuous monitoring is undergoing
Im currently at 50mg of cenobamate but also on clobazam and keppra but this so far working well for my main seizures im still not at my target dose of 100mg and i dont know if when they drop clobazam completely as they said was just for short term i will need to go up a dose for cenobamate or not as if they drop my keppra which is at 2500mg a lot but i have taken way supratherapeutic levels prescribed wrongly and tried ketogenic diet everything under the sun but xo far so good it is jiccjjng jn i have balance and sleepiness and drooling, balance issues and go to the bathroom a lot but my fellow epileptic friends on same drug im on say it is the same for them but hoepfuyll i will be okay and will be able to complete my PhD ❤
Wow!!! 🎉 on this Halloween 2022 nothing as frightening as hope and love. Great job Doc. I am a veteran and prior Corpsmen of a war. I hope the USA Veterans Administration has this soon. If ever out here in Oregon, check out Cubanisimo Winery, he’s a retired Cuban neurosurgeon . Please do a video on Level 3 and 4 Epilepsy Centers. Viva OHSU but my Doc went to Mayo. 😉
I have 13yrs old very close relative with intractable epilepsy after EB encephalitis. He is with seizures for 3-4 days every 3-4 days for 6 years already. Is this prescribed for children already?
Lifestyle changes and breaking free of the illusions of our modern society being Life, and regaining our natural ways of Harmony within and with Nature. Stress is #1... try this n try that n suffer from side effects and seizures still, is their way. Look to indigenous responses/views on seizures. Like Heart Disease, humans have gotten so far into darkness just for modern society/cultures expectations and indoctrination. Soul sickness can't be addressed by lab coats,and they tiptoe around to avoid it. 35yrs old with epilepsy since 2007 (every single test and study has been 100% normal) Not discrediting physical lesion or tumor but even with them, the spiritual aspect and way of believing and living effects greatly! We are organic beings not meant to be in this artificial 'concrete jungle' . Against our deepest truest self. Become aware and heal ourselves before too late ❤
My finance hasn’t had seizures since he started taking Xcopri. He has a lot of the side effects though. He will get ahold of his doctor, however any thoughts when it comes to lessen the side effects? Headaches are the biggest thing. It’s been over 5 months so I would assume the headaches should be gone, but I am not a doctor. Any thoughts?
I never knew I had epilepsy. I was diagnosed with epilepsy at 57 years old. I had seizures before 57 but no one ever told me that it was epilepsy. In August of 2023 I had my 4th grand mal seizure so I went to Weston Cleveland Clinics epilepsy clinic. I have tried 6 meds and they make me feel really bad. Some made me want to hurt myself. But as soon as I got off them I felt better but the seizures immediately go bad again. I have asked Dr Garcia for different medications they have not worked either. I’m on lococimide and it’s ok but I still am having small seizures.
Hi Doctor, My daughter is having more than 25 seizures/day. She has generalized seizures along with a genetic condition. It’s been horrible. My little princess is in constant struggle just to take a breath. She is on Lamictal 300mg and Xcopri 400mg/day. She is also on Diamox for Hyperventilation and breath holding spells. She Hyperventilates and hold her breath to the point of turning blue. She has been on the Ketogenic diet. She was better at some point but now, nothing seems to works. We have tried more than 10 different medications and nothing works. Please help.
I'm scared to take it. I am 37 and have had epilepsy since I was a teen bc my seizures are based on my hormones. I've been on Topamax and Lamictal for about 15 yrs and now the Epidiolex now for 4 yrs. I was a tester patient for Briviact and that was horrible. Vimpat made me twitch. Onfi made me have more seizures. I also take amlodipine for hbp. So this medicine will make me feel funny?
Hi Justina, had the same experience with Briviact, it was horrible. Anxiety, depression, anti-social behaviour, no appetite. I understand you're scared, and, yes, you always have to discuss it with a professional. I just can tell for me and others I know, that Xcopri doesn't make psychiatric problems (just in my and my known cases!) and that was the only thing relevant for me, now taking it for 1,5 years. Don't know if that was what you were scared of. But yes, there are things like double seeing, light clumsiness etc. in the beginning or if you take it without eating. I'm just so thankful not having to take Briviact anymore. For me Xcopri works. I'm not seizure free, but a reduction about 50% and starting extremely slow. And that also in the time, when I was reducing briviact. Maybe now its going to stabilize. Good luck!
@@lukasmoma1 Yes that's exactly why I'm scared! Those other three new medications just gave me a paranoia problem with trying anymore new medication I guess. I also take Lorazepam occasionally if I have an aura, after a seizure or if I have more than one in a day. Lorazepam may be in the same category with some of these new meds but it's an old drug and they always use that or Diazepam when I've had a grand Mal seizure. I appreciate your response and I am glad it's working for you.
Hello Sir My Name Is Varnit Verma I have a Simple Partial Epilepsy from 2015 But Not Recover as Much Weekly 2-3 times I get it epilespy sir. I regularly takes a medicine .
Doctor, do you know if this would help with nocturnal seizures? I was on Depacote first and now am on Locasamide - had a killer seizure in my sleep this week, even the rescue medication didn't work :(
@@DrOmarDanoun my neurologist just prescribed it for me, she said that it has very high reviews as well - thank you for making this video Dr Omar, I cant thank you enough! I am still recovering from last weeks seizures, they were the worst I have had and my wife captured all of it on video.
My brother has JME since 2018 I m from pakistan Under treatment of dr fozia soddiqui But after 1.5 year again hr suffer from fitz Any advanced treatment for frontal lobe epilpsy JME I m soo tensed Pls need advise
It is now 4:45pm on 7-15-23. I went to see my neurologist on 7-7-23. On that same day he sent Ina prescription for 200mg of X-Copri tablets. I still haven't seen them in the mail...it is now 8 days later. My doctor isn't in on Saturdays and I am completely out of X-Copri. My mail order has already been paid for and still haven't come. I want to get to my Kroger pharmacy before they close. What should I do??
Thank you for an interesting video. I have had epilepsy for 49 years and have been on 8 medications so far. Am currently weaning off Pregabalin for the next 2 weeks, but been on Phenytoin for several years. I have taken this name down to speak to my Neurologist about it in the next few months. Would this interact with Phenytoin 200mg. once daily?
Great Experience I had with you DOC OKOUGBO RU-vid channel after using his herbal product & get cured from Epilepsy totally. Thanks so much DOC OKOUGBO RU-vid.
As per research, topamax can be helpful for certain types of seizures, especially Atonic or drop seizures. However, Topamax can also raise risk of kidney stones. Keppra is good for myoclonus and tonic clonic, but can also exacerbate seizures in some people so you need to communicate with your child's neurologist if you see any reported and known side effects of prescribed meds. Keppra can also increase aggression in some people. Be aware and discuss with your sons neurologist. God bless you.
I have simple partial seisures and take 1200 mg of depakene solution per day..i still get a seisure once a year..my current weight is 72 kg.. can this dosage be too low for me ? Thx
There is no reason why not to start from the beginning... However, when we study a new drug we start with the difficult cases first then move to every one after
My daughter is 14 years was not born with seizure please I need help because since she started having seizure she has lost a lot of weight and she can remember her past and she is very aggressive now she is on tegretol lamotrigin phenobarbone and diazepam please what can I do to make her remember her past and be calm again
Please read the information list about the side effects of each medicines . My daughter also was aggressive under lamotrigin...Would you try to find a clever doctor who should understand the influence of menstrual periods on epilepsy seizures and hormonal status at all.? Generally , for last 30 years it may be just the next representative of new generation of anti epileptic drugs that attempts to be the best . We have just to hope on it.
Ok. I take Briviact and Depakote but I’ve still had two GTCs this year. I know that’s not a lot compared to others but I’m desperate for total seizure freedom.
Right now I’m on Lamictal that’s it. It has no side effects I think it helps with about 50% on my seizures. I really want brain surgery. I’m so tired of this I don’t even get excited anymore when I go seizure free I might take this my but, you said only 25% of people go grandma Free? I don’t know what to do anymore my seizures are nocturnal anyway that’s only reason why I’m safe because I’m in bed when they happen
I can't provide medical advice online or evaluate patients over the internet. But feel free to ask your questions in New comments on the videos and I will answer to the best of my knowledge.. There are so many very informative videos on the channel that will likely answer your questions
@@DrOmarDanoun I understand I just wanted to know, my son is 15 turning 16 in February. Is cenobamate no prescribed to kids bc of height and weight? What's the reason.
