✅ Get evaluated by Dr. Omar Danoun directly, book your online appointment below (for age 16 years and older) appointment.dromardanoun.com/ In USA, please call the clinic
I am still on meds but I have the 2nd Generation RNS from 2019. I had the 1st generation as well but finally got to time to have to change the battery, so I got the full 2nd Gen device. It has helped tremendously. It has lowered frequency and strength of my epilepsy.
I have catamenial epilepsy and I started Ketogenic diet because I had PCOS and Endometriosis. However when I was pregnant and breast feeding I had no epilepsy at all but I had a seizure whilst giving birth and it took me days to recover
Thank you so much for the information, and so kind of you.. my neurologist told me that I should get a brain surgery and I was way too scared of that then she told me about the VNS so this was very informational!
I'll be seeing neurologists at University of Oklahoma next month to discuss which surgery option is best for me. Thanks for the informative video. Needed some comfort until then. 👍
I want to get that! My Epilepsy is not controlled. I am in MA. I’m on 3 medications. I was taken off 2 recently (cold turkey)! I have had Epilepsy for 40 years and have been seizure-free. After this recent and unexpected change my seizures are back. I have generized Myoclonic Epilepsy. It used to be JME. My local neurologist doesn’t know what the heck she’s doing. She just threw me on Lamictil( which I was on in the past and was a fail). Why not a newer partial complex medicine??? I’m having partial seizures and grand Mal seizures daily, now. I need help. I really want to try the RNS!
@@altesse77I’ve tried so many medications and none have worked until I started taking XCopri this year. There are still breakthrough seizures but it works for the most part. I have complex partial seizures and would have 20 or so a day for at least a half of every month before trying it. It’s new and very expensive but the company will help those without insurance to get it. Anytime the word surgery comes up I get very scared. And even a little depressed. I’m so grateful for something that is finally working.
Fantastic video about this complicated subject. The reason why I found this video is because my neurologist suggested me VNS because we have tried so many medications and I still having seizures, even though they are very mild but it still there. According to my Dr. I have a called "Petit Maul Seizure" since I was teenage (I am 72 now) . I never had seizures that caused me to fall down, foaming or other similar issue. I only have a few seconds of "absence" and a little confusion but this happens randomly., sometimes more than one a day and sometimes none for the entire week. At this time I use two medications: Keppra XR 1500 mg twice daily and Vimpat 200 mg twice daily. Now I am wondering if VNS would be a good resource to me. I am scheduled to go to this procedure but no yet a 100% convinced that it is my last option.
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
Im scared of going to one of the centers. One I know they will trigger them to monitor your brain. Worrying about your responsibility at home job and family. It's can maybe help many or not. My pain after a epilepsy seizure is horrible. I wish one day their is a cure. Without so much pain. But thank you Dr. I may help others. Thank you for something else that can help.
It is sad that this was the ketogenic diet and fasting was the last thing on the list. I did not even hear about this therapy until after I was put on multiple medications and brain surgery. It was then that I found out about the keto diet and fasting (And not even from my doctor). I think that nothing is too strict to stick to when it matters to your health! everybody is different but a mix of both the keto diet (or at least a healthier living style and exercise) and medications was the outcome that helped me the best. Exercise and diet should be the first thing that neurologists should recommend with medications! P.S. Thank you for the information Dr. Omar
@annmarie2083 bruh, he started from most practice and “best” to worst/least effective. But then at the end he brings up “if non of these work, there is a keto diet”…even tho it is ~50% effective. That was not my point anyway. I was saying that my epileptic friends and also myself never even heard of this word from our neurologist. I had to do more research on my own(which is fair, but not good that the doctor did not bring it up over brain surgery!)
We all need to be given every option and possibility for our own wise choice after all options have been explained, as deeply and as well as Dr.Omar here who has given me more in one video than any Neurologist over 40 years. We need to self advocate and look at both eastern & western and everything in between. If yoire not being heard or your sense of self awareness is being dismissed, I strongly suggest to keep trying and always trust your gut instinct, even if it says the Neurologist is not hearing you, go somewhere else 🥰💕☺️ STAY optimistic, keep going ~ sending much love & many Blessings to all 💖🩵💫✨️💕
I’m Drug resistant Bi Temporal lobe epilepsy patient that had the RNS device implanted 2 years ago and I have not seen a reduction in seizures. (But it has a done a great job recording all of them) I’m trying to figure out my next direction.
@@Sydopath great news. NeuroPace and the neurologist notice one of the temporal lobe probes was slow to react to the seizures. They made a “adjustment “ to react faster. They also decided to try Onfi (Clobazam) (which is the 13th medication we’ve tried), and because of the side effects, I am on a very low dose (5mg). Between those two decisions, have had zero seizures in over 2 months. A record. Hope is a good thing!
@@dqdave That is great news. I have left side temporal lobe epilepsy that is treated with keppra. It stopped the major seizures I had 8 years ago, but I still get focal absence seizures about once a fortnight. Because of the high risk, I gave up driving, but I still wish for a miracle Best wishes to you 👍
@@Reeltinyphish great news. They found one of the probes was “reacting” to the seizure 10 seconds late and they “readjusted “ it and brought the seizure down to just a couple in the last year. (Also Changed medication to Clobazam light dose 10mg)
I have a scar on my left temple lobe, and I was told by my parents, and when I was school, I was in a slow kids class, wondering if the scar was the problem.
Honestly, I am sooooo frustrated at this point with medication. I have tried Tegratol (SJS happened), depakote, (SJS) Dilantin (couldn’t get my levels correct. They were either too high or low), phenobarbital (didn’t help) FINALLY, Lamictal has reduced the TCs, but not completely. We’ve down to like 6/year of those kind! YAY! Used to be like a couple of times a month. Still have issues with aware and focal unaware seizures though. Only have unaware ones once or twice a month, aware ones are a lot more often. Those I don’t mind as much. The other kinda are much much more frightening, not for me, I’m not observing it😂 but my poor kiddo hates seeing them.
My youngest Sister has Epilepsy and has taken Keppra, Omega fish 3,Telgretol and Epilim but it's gets worse,seizures disturb her every month and she chews her mouth 😭😭
I had to stay in the orlando epilepsy center for 5 days and then they slowly lowered my medication until I had a seizure. They had wires taped on my head. The doctor said that I have a scar on my left temple lobe. I noticed now. Sometimes, when I talk, words just don't sound right coming out.😢
I can feel something even while on meds not shaking but feel something going on I have a burning no shaking I know what's going on but it feels nonstop
Fascinating. What came to my mind(lol) was if their are people who get after sEEG not one surgery but two or more? I assumed after the great sEEG locates that a person will get only one surgery. 🤔. I wonder if having 2 surgeries is worth the risk.
I've had epilepsy since I was 15, I'm going to 37 now, after so many yrs Its hard for me to believe they haven't been able to come up with something better than them lil devices that can only help just like the meds or probably end up worse. It scares me to get surgery, I see people's comments and people that have gotten these surgerys already still on meds still getting seizures so there's no point to me every one is different I rather stay just on meds I've put myself on God's hands than a Dr's knowing I can come out worse like lose of memory speech, ect.. I believe things happen for a reason, so i just stay strong and keep going every day. Dr's need sick people like us to make money & live their lives.
Thanks a lot for sharing useful information... My son is epileptic with focal seizures always towards right side... He has drug resistance epilepsy and not a suitable candidate for surgery... He is only 10 years old... Seizures started when he was 1year old.. Kindly suggest 🙏
Do you have any experience with treating reflex epilepsy that is focal in nature and induced by a startle response? I cannot find any help. I would greatly appreciate if you could point me in the right direction. Thank you 🙏
I take 4 meds and have a vns and still have focal onset seizures,starting in my left temporal lobe . My brain doesn't like to behave. My vns stopped my tonic clonic and drop attacks since 2009. But I still have smaller ones. Sometimes medium types.
Salam, my son have weizures because meningitis tb and since since 4 year till now the seizures almost everyday even Dr give high dose...now on topimirate and keppra
Thank you for all your videos. My neurologist and gp have provided next to nothing about my generalized epilepsy so i am relying on you for education. Recently i have started to get a different type of seizure or at least that's what i think it is. Question is, can someone have more than 1 type of epilepsy?
Hi , doctor I have a son that having drug resistant epilepsy .I'm from Kenya and I think surgery will work best for him ,he's four years now . please and kindly can I get your email address?
Hello doctor am from Kenya my son have been getting seizure when sick and with temperature since he was 3 years till know he is 6 years was recommended by doctor to give him phenobarbital but have been told stop by doc but he is still getting suizure kindly advise me the way forward
My child not eating medicine when we give by force or in mixed in some food but we failed because he feel medicine taste he stop eating and some time vomiting..
It is petty that we don't have all these opportunities in Africa. I took my son to Nigeria and Senegal lastly for treatment, but still we have no solutions, and we could not get visas for further treatment abroad.. i always think of brain surgery. We told is from prolonged labour. There is no much they can do because the brain is not growing is small he is now 23 years. Now the seizure do come three times a month towards the ends of the month. Within that period he will fell down just for few minutes, after that confusion. He always moody and quiet, what to be alone, because that he can not make friends and work. Seriously in need your medical advice
My 30 month daughter has tried prednesalone plus vigabatrin but vigabatrin caused toxicity in her brain then they put her on keppra plus clonazapam and a 4:1 keto diet, now she's on a higher dose of keppra and clobazam but she still gets 1 to 3 daily spasms. I'm worried she is drug resistant. 😢😢
My nephew is just experiencing epilepsy it started 3weeks ago after d doctor said he has meningitis.pls How do they contact u.the seizure is much we don't want to loose him.they are in Africa 😊
If would like to make a consult with Dr Omar Danoun 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
DrOmarDanoun... I am tired of having seizures... so I self medicate with alcohol. How can I get a specialist near me? I live within 2 hours of Detroit!
@@DrOmarDanoun JezakeAllahu khair for your kind reply Dr. Omar. I'm just eager to know if you have private clinic/epilepsy center which gives treatments for patients who come from abroad? 🤔
I had the sleep study they slowly took me off my medication. Of course I had one , I'm on 2 controlled substances and one other one . So the thing is i can 8 to 9 months without any. Then then other? Is I can miss one pill then I'll have one.
Would these treatment options apply to seizures related to grey matter heterotopia diagnosis? My doctors believe my complex partial seizures are connected to me having brain lesions (PVNH) they detected in my MRI but continue to prescribe meds that fail continuously and learned that I may not be a candidate for surgery due to the locations of my seizures. Would I need to consider an alternate treatment approach due to my PVNH diagnosis or would it not make any difference? I appreciate any insignt you have to offer.
I know my chances are low of getting in contact with you but I would love the ability to talk to you. I am on 4 seizure medications and I still am having seizures. I had brain surgery in 2008 to have a shunt implanted for intracranial hypertension. That is when my seizures started. I live in a small town and there are no epilepsy specialists. My 7 day camera eeg showed fluttering in my frontal lobe but I had no seizure during the testing. I need help!!
I was dx c SLE since 2012, and having seizure since 2017, even though im taking my meds regularly I still having seizure. Am I drug resistant? Or is it because of my SLE. Im confused.
My child starts seazure in 4mons old we go to doctcor 2 weeks after .he take eeg for now and he is diagnose infantile spasm the neuroligist give him phenobarbital. Is it ok?he is now at the hospital. I need some advise.
Lacosamide works on slow inactivation of sodium channels and Eslicarbazepine on fast sodium channels.. All antiseizure medications mechanisms are explained in the drugs video
I have epilepsy and most of the time when I have a seizure my heart rate slows down so about 9 years ago I had a loop heart rate monitor put inside me they have told me that my heart rate has slowed down but not extremely badly or for to long just before they discovered this they were continuing a VNS for me and if I remember correctly I think they said that they can't give me a pace maker and VNS and now am going through the menopause my seizures have become a lot worse so I'm thinking about asking my epileptic nurse about the VNS so would you recommend VNS for me because am sometime having 3 seizure a day and over the years gone by i have tried about 9 different medicines and now am taking 3 different medicines a day for my epilepsy
My son got diagnosed with West Syndrome when he was 7 months old. Now he is 2 years 4months old. He has drug resistant epilepsy. We did all tests like Genetic.. Mri etc.. All tests were normal. We couldn't find the cause of sezures. He has developmental delays also. Please suggest me if VNS or DBS will be suitable for him or not.
My 19 year old daughter has a temporal-occipital brain tumor that is inoperable and causes seizures. She’s on 2 high dose meds and still having breakthrough seizures. Are any of these alternative surgeries useful in her case? I imagine a surgery to remove the tumor is most likely to be effective but the vein of labbe is running thru her tumor so they found it too risky to debulk and had to close up mid-surgery.
Hi, my cousin is on lamacto 600mg since then she’s not the same: falling, fainting, fatigue, can’t speak properly can’t study she’s even thinking to leave school so what can you advise us, we leave in the uk.
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
Seizures46 yrs lady, at early mornings predominantly 4 am to 7am once a week , lasting 2 minutes to 15 minutes. Attacks after 10 am is rare. Taking drugs frissium 10-0-20, lacosam 100-0-200, tegratol 400-0-400, levocetam 1000-0-1500. Getting treated since 20 yrs. Sir, pl advice.
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
If one of your patients have been seizure free for a number of years with a combination of Dapakote and keppra then the dosage was altered due to a low level a new increase was administered and seizures became more frequent, every month, You remove Dapakote with lamotrigine 200mg 2x daily and increased Keppra to 2000mg 2x daily and still have seizures at the same frequency would you consider revisiting the two medications that worked for several years before the change? (generalized)
Assalam Alaikum, our child is sick, he is six years old and has been falling down suddenly since one month, he is not mentally well now and does not take medicine at all. And when we give medicine in food, he stops eating and often vomits. Translate text with your camera Assalam Alaikum, our child is sick, he is six years old and has been falling down suddenly since one month, he is not mentally well now and does not take medicine at all. And when we give medicine in food, he stops eating and often vomits.
Pls how can you help me for my son that has seizure disorder and many medications has been applied but still it seems not working,and the worst is happening now because when he pool he use to eat it his pool if attention isn't giving immediately.And he can't say any other word than hallelujah.pls I really need your help about his condition urgently.Your respond will really be appreciated.
Hi sir my age is 22y I have magna cisterna cyst .my radiology doctor mention that only Megna cyst and not mention size. This condition leads to can develop any memory loss .i need my condition how to cure?
Likely the cyst is not causing any issues.. Hard to tell for sure without evaluating the case.. Discuss with your neurologist for evaluation and treatment if needed
My son diognose focal epelepsy last year he take medicine 1st phonebarbetal syrup 2nd is oxcarbaziphine and the 3rd is toperomite but untill now still seizure
Valporate has caused pancreatitis in me and now medicine has been changed to levetiracetam 1000mg with clobazam 10mg twice a day... Still sciezure happens left with no hope
Why would you even mention Accupuncher I do holistic what did you do for me the medicine is not working for me and I’m not gonna keep trying and surgery will never be an option
Unfortunately there is no evidence that acupuncture helps epilepsy. Surgery is the way in cases of epilepsy that is resistant to treatment and with different types of surgery available, everyone can benefit
Hi , doctor I have a son that having drug resistant epilepsy .I'm from Kenya and I think surgery will work best for . please and kindly can I get your email address?
I had a video EEG but didn’t have a seizure, so the doctor said he couldn’t definitively say I have epilepsy, but said I probably do because he saw “slow waves” which indicates a seizure is about to happen, but didn’t. Does that make sense to you? Thank you
We are about done moving out of arkansas, my mom called an ambulance and i went away from god knows from where who knows when thursday. And i wasnt smart enough to not take the wrong drug from the hospital pharmacy. Youd think their $3000 pill would cost a bunch if theyd at least get it right!!! Now were staying at my sisters house next to the better hospital because they wont prescribe the goddamned naysilam for someone that has 7 seizures every time they drop to the floor. They always ask mom and dad “do you know how to use this” like yeah their reviving their son, they put you in the ambulance because they didn’t have any more, so they thought they wouldn’t drug me. I was delirious so i couldn’t not take the medication. I thought they were giving me a new one. Im sorry if im venting to you a little, i was just in the hospital in they are… something else. I have nothing wrong with anyone there. Id just like to meet whos in charge.
@@DrOmarDanoun My daughter was diagnosed with Epilepsy. She had her first seizure while having asymptomatic covid. Her mum and I have no history and her delivery was so normal. I am worried she might have a cause that needs to be addressed or the condition might get worse.
Can a poor diet cause seizures? Poor diet meaning processed foods(ramen noodles, frozen pot pies, hot pockets, fast food,etc), sodas, one meal, low or no fresh fruit and vegetables.
My dad was prescribed sodium valproate then they added gabapentin. Now he is taking gabapentin and phynetoin. Still has seizures every couple of months and he is taking large doses.
@@DrOmarDanoun not really helping. Sometimes he’s fine for 6 or 7 months but now he gets seizures every month and it’s always around 3AM in the morning. He was diagnosed with epilepsy after a minor stroke.
Hi , doctor I have a son that having drug resistant epilepsy .I'm from Kenya and I think surgery will work best for . please and kindly can I get your email address?
Hi , doctor I have a son that having drug resistant epilepsy .I'm from Kenya and I think surgery will work best for him ,he's four years now . please and kindly can I get your email address?
My 9yo daughter is currently in the hospital because due to COVID and an inability to tolerate her epilepsy medications by mouth. Because her current medications: Briviact, Rufinamide, Epidiolex, and Clobazam-are not available in IV form, the doctors decided on Lacosamide. My daughter has thus far has been medication resistant, resulting in the placement of a VNS about a month ago. Previous medication’s include Depakote, valproic acid, Keppra, lorazepam, and clonazepam. Her seizures are generalized-focal and drop only, 2-15 seconds in length, and with a frequency of roughly every 20 seconds to 2 minutes. So, hundreds per day. Here is the question: Is it possible that even though all of these other medication combinations failed, that lacosamide is some sort of miracle drug for her? If so, how does it work differently from the others that would cause such a DRAMATIC decrease in her seizure activity. In the past three days, I have seen only a handful of seizures per day. How is this possible?? Any guidance you can offer is very much appreciated! I am going to watch the medication resistant video as you suggested and I will also post this comment/question there. Thank you!!!!
✅ Get evaluated by Dr. Omar Danoun directly, book your online appointment below (for age 16 years and older) appointment.dromardanoun.com/
In USA, please call the clinic
I am still on meds but I have the 2nd Generation RNS from 2019. I had the 1st generation as well but finally got to time to have to change the battery, so I got the full 2nd Gen device. It has helped tremendously. It has lowered frequency and strength of my epilepsy.
I have catamenial epilepsy and I started Ketogenic diet because I had PCOS and Endometriosis. However when I was pregnant and breast feeding I had no epilepsy at all but I had a seizure whilst giving birth and it took me days to recover
Watching this made me feel really good and relaxed as i was having auras all day and me feel really scared about my condition
Thank you for these videos. As someone who is getting ready to a second laser brain surgery!
Great information. This is the best video on epilepsy I have ever watched 👍
Thank you so much for the information, and so kind of you.. my neurologist told me that I should get a brain surgery and I was way too scared of that then she told me about the VNS so this was very informational!
I'll be seeing neurologists at University of Oklahoma next month to discuss which surgery option is best for me.
Thanks for the informative video. Needed some comfort until then. 👍
Good luck
It would be great to know more about catamenial epilepsy and menopause
Please review the video on Catamenial epilepsy.. It can get better after menopause
بارك الله فيك ياغلا روعه❤
I had the RNS put in back in 2019. It is fabulous. It is working well and I feel safer.
Glad to hear that.. Thank you for sharing your experience
I want to get that! My Epilepsy is not controlled. I am in MA. I’m on 3 medications. I was taken off 2 recently (cold turkey)! I have had Epilepsy for 40 years and have been seizure-free. After this recent and unexpected change my seizures are back. I have generized Myoclonic Epilepsy. It used to be JME. My local neurologist doesn’t know what the heck she’s doing. She just threw me on Lamictil( which I was on in the past and was a fail). Why not a newer partial complex medicine??? I’m having partial seizures and grand Mal seizures daily, now. I need help. I really want to try the RNS!
@@altesse77did you already try and fail Keppra too?
@@altesse77I’ve tried so many medications and none have worked until I started taking XCopri this year. There are still breakthrough seizures but it works for the most part. I have complex partial seizures and would have 20 or so a day for at least a half of every month before trying it. It’s new and very expensive but the company will help those without insurance to get it.
Anytime the word surgery comes up I get very scared. And even a little depressed. I’m so grateful for something that is finally working.
Fantastic video about this complicated subject. The reason why I found this video is because my neurologist suggested me VNS because we have tried so many medications and I still having seizures, even though they are very mild but it still there. According to my Dr. I have a called "Petit Maul Seizure" since I was teenage (I am 72 now) . I never had seizures that caused me to fall down, foaming or other similar issue. I only have a few seconds of "absence" and a little confusion but this happens randomly., sometimes more than one a day and sometimes none for the entire week. At this time I use two medications: Keppra XR 1500 mg twice daily and Vimpat 200 mg twice daily. Now I am wondering if VNS would be a good resource to me. I am scheduled to go to this procedure but no yet a 100% convinced that it is my last option.
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
Hello. Could you please share more info? Thank you
Im scared of going to one of the centers. One I know they will trigger them to monitor your brain. Worrying about your responsibility at home job and family. It's can maybe help many or not. My pain after a epilepsy seizure is horrible. I wish one day their is a cure. Without so much pain. But thank you Dr. I may help others. Thank you for something else that can help.
Please find a way or something that can stop this sickness for good it's very stressful
Total time taken partially to recover fully after right frontal lobe resection for drug resection epilepsy
It is sad that this was the ketogenic diet and fasting was the last thing on the list. I did not even hear about this therapy until after I was put on multiple medications and brain surgery. It was then that I found out about the keto diet and fasting (And not even from my doctor). I think that nothing is too strict to stick to when it matters to your health! everybody is different but a mix of both the keto diet (or at least a healthier living style and exercise) and medications was the outcome that helped me the best. Exercise and diet should be the first thing that neurologists should recommend with medications!
P.S. Thank you for the information Dr. Omar
Amen 🙏🏼
It’s not the last one. He started from the last to first
@annmarie2083 bruh, he started from most practice and “best” to worst/least effective. But then at the end he brings up “if non of these work, there is a keto diet”…even tho it is ~50% effective.
That was not my point anyway. I was saying that my epileptic friends and also myself never even heard of this word from our neurologist. I had to do more research on my own(which is fair, but not good that the doctor did not bring it up over brain surgery!)
We all need to be given every option and possibility for our own wise choice after all options have been explained, as deeply and as well as Dr.Omar here who has given me more in one video than any Neurologist over 40 years. We need to self advocate and look at both eastern & western and everything in between. If yoire not being heard or your sense of self awareness is being dismissed, I strongly suggest to keep trying and always trust your gut instinct, even if it says the Neurologist is not hearing you, go somewhere else 🥰💕☺️ STAY optimistic, keep going ~ sending much love & many Blessings to all 💖🩵💫✨️💕
I’m Drug resistant Bi Temporal lobe epilepsy patient that had the RNS device implanted 2 years ago and I have not seen a reduction in seizures. (But it has a done a great job recording all of them)
I’m trying to figure out my next direction.
Good luck to you David. Please update us of your progress 👍
@@Sydopath great news. NeuroPace and the neurologist notice one of the temporal lobe probes was slow to react to the seizures. They made a “adjustment “ to react faster. They also decided to try Onfi (Clobazam) (which is the 13th medication we’ve tried), and because of the side effects, I am on a very low dose (5mg).
Between those two decisions, have had zero seizures in over 2 months. A record.
Hope is a good thing!
@@dqdave That is great news. I have left side temporal lobe epilepsy that is treated with keppra. It stopped the major seizures I had 8 years ago, but I still get focal absence seizures about once a fortnight. Because of the high risk, I gave up driving, but I still wish for a miracle
Best wishes to you 👍
How are you doing now brother?
@@Reeltinyphish great news. They found one of the probes was “reacting” to the seizure 10 seconds late and they “readjusted “ it and brought the seizure down to just a couple in the last year. (Also Changed medication to Clobazam light dose 10mg)
Thank you doctor I love your videos but I hate my VNS I live in California and I'm going to Stanford in California for brain surgery here soon
I have a scar on my left temple lobe, and I was told by my parents, and when I was school, I was in a slow kids class, wondering if the scar was the problem.
Honestly, I am sooooo frustrated at this point with medication. I have tried Tegratol (SJS happened), depakote, (SJS) Dilantin (couldn’t get my levels correct. They were either too high or low), phenobarbital (didn’t help) FINALLY, Lamictal has reduced the TCs, but not completely. We’ve down to like 6/year of those kind! YAY! Used to be like a couple of times a month. Still have issues with aware and focal unaware seizures though. Only have unaware ones once or twice a month, aware ones are a lot more often. Those I don’t mind as much. The other kinda are much much more frightening, not for me, I’m not observing it😂 but my poor kiddo hates seeing them.
My youngest Sister has Epilepsy and has taken Keppra, Omega fish 3,Telgretol and Epilim but it's gets worse,seizures disturb her every month and she chews her mouth 😭😭
What about neurofeedback therapy? It was developed to help people head off seizures.
A friend cured her son's seizures with Chinese medicine herbs by detoxing his liver. That's something! A number of his autism symptoms improved, too.
What were the herbs?
Please share!
Yes please
Please share❤
Could you please share more info? Thank you
Thank you!
I have VNS, every medication and nothing works.... keto is my last option and only hope 😢
Think about ganaxolone or zuranolone it's neurosteroid for epilepsy and fda approved
I had to stay in the orlando epilepsy center for 5 days and then they slowly lowered my medication until I had a seizure. They had wires taped on my head. The doctor said that I have a scar on my left temple lobe. I noticed now. Sometimes, when I talk, words just don't sound right coming out.😢
How about a video on the drug ONFI?
I can feel something even while on meds not shaking but feel something going on I have a burning no shaking I know what's going on but it feels nonstop
very informative videos doctor
thanks
Thank you!
Fascinating. What came to my mind(lol) was if their are people who get after sEEG not one surgery but two or more? I assumed after the great sEEG locates that a person will get only one surgery. 🤔. I wonder if having 2 surgeries is worth the risk.
I cannot understand But iam facing problem since 22 yrs now 36 half life gone what happens if we die no matter in this bloody world Thanks Doctor 🙏🏻
Don't lose hope ! Stay strong 💪
I've had epilepsy since I was 15, I'm going to 37 now, after so many yrs Its hard for me to believe they haven't been able to come up with something better than them lil devices that can only help just like the meds or probably end up worse. It scares me to get surgery, I see people's comments and people that have gotten these surgerys already still on meds still getting seizures so there's no point to me every one is different I rather stay just on meds I've put myself on God's hands than a Dr's knowing I can come out worse like lose of memory speech, ect.. I believe things happen for a reason, so i just stay strong and keep going every day. Dr's need sick people like us to make money & live their lives.
I’m still having epilepsy and on 5 medications I don’t even remember what my seizures are called because it’s so rare. I have a VNS.
Surgery was not an option. It would have made my Cerebral Palsy worse
Thanks a lot for sharing useful information... My son is epileptic with focal seizures always towards right side... He has drug resistance epilepsy and not a suitable candidate for surgery... He is only 10 years old... Seizures started when he was 1year old.. Kindly suggest 🙏
Please discuss the new information with the neurologist
Have you tried the keto diet yet? The VNS is approved for 4 years or older in the USA, the others are 18+ I believe
Hello. Im experiencing side effects from my medicine and im looking for natural ways ro help ky epilepsy
Do you have any experience with treating reflex epilepsy that is focal in nature and induced by a startle response?
I cannot find any help. I would greatly appreciate if you could point me in the right direction.
Thank you 🙏
I take 4 meds and have a vns and still have focal onset seizures,starting in my left temporal lobe . My brain doesn't like to behave. My vns stopped my tonic clonic and drop attacks since 2009. But I still have smaller ones. Sometimes medium types.
Thank you for sharing your experience
what about xcopri? your thoughts
The only medication that has worked for me after trying SO many!
Salam, my son have weizures because meningitis tb and since since 4 year till now the seizures almost everyday even Dr give high dose...now on topimirate and keppra
Hope the information in the video is helpful
Thank you for all your videos. My neurologist and gp have provided next to nothing about my generalized epilepsy so i am relying on you for education. Recently i have started to get a different type of seizure or at least that's what i think it is. Question is, can someone have more than 1 type of epilepsy?
I'm on 3 different seizure medications and still having breakthrough seizures.
Hi Doctor started to have epilepsy 2015 after i was having Tb minengitis can i be cured?
My son has LGS and is autistic he is on 6 medication and a VNS and still having seizures. We are now looking into brain surgeries :( .
Did you find the epilepsy center for you and is surgery an option?
Hi , doctor I have a son that having drug resistant epilepsy .I'm from Kenya and I think surgery will work best for him ,he's four years now . please and kindly can I get your email address?
Is there anything I can do to tell if the VNS is working?
I'm using VNS and taking 2 meds. Still having seizures everyday.
I’m close to Boston, MA. I didn’t find the one for me, yet. I got tests done at one as a teen. Went once. Surgery is not an option, unfortunately.
Hello doctor am from Kenya my son have been getting seizure when sick and with temperature since he was 3 years till know he is 6 years was recommended by doctor to give him phenobarbital but have been told stop by doc but he is still getting suizure kindly advise me the way forward
My child not eating medicine when we give by force or in mixed in some food but we failed because he feel medicine taste he stop eating and some time vomiting..
It is petty that we don't have all these opportunities in Africa. I took my son to Nigeria and Senegal lastly for treatment, but still we have no solutions, and we could not get visas for further treatment abroad.. i always think of brain surgery. We told is from prolonged labour. There is no much they can do because the brain is not growing is small he is now 23 years. Now the seizure do come three times a month towards the ends of the month. Within that period he will fell down just for few minutes, after that confusion. He always moody and quiet, what to be alone, because that he can not make friends and work. Seriously in need your medical advice
I have grand mal epilepsy, I was wondering if brain wave can help reduce epilepsy
What about split brain surgery?
My 30 month daughter has tried prednesalone plus vigabatrin but vigabatrin caused toxicity in her brain then they put her on keppra plus clonazapam and a 4:1 keto diet, now she's on a higher dose of keppra and clobazam but she still gets 1 to 3 daily spasms. I'm worried she is drug resistant. 😢😢
I have vocal and grandmal seizure im on depakote vimpat and abivact, zonisamide and many more, my nero thinks that it's normal.
We are working on phase 2 test for other options. I'm already on 3 anti epileptic medications. Henry Ford is a wonderful hospital
Glad to hear that
My Dr said I have a scar on my left temple lobe.
Really cool and useful information, random question how often with the 1-5 Day VEEG catch epileptiform activity?
Thank you..very high about 90 percent of more in epilepsy patients
My nephew is just experiencing epilepsy it started 3weeks ago after d doctor said he has meningitis.pls
How do they contact u.the seizure is much we don't want to loose him.they are in Africa 😊
What about fixing dysfunctional mitochondria as the cause of seizures?
crickets.
Didn't you hear doc? Treatment. Treatment. Treatment. Treatment.
Reversing/curing or preventing are not words used in the industry.
My son is on epilizine 500 but still experiencing seizures what can we do
Dr i need to discuss with you.. About myself
If would like to make a consult with Dr Omar Danoun 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
DrOmarDanoun... I am tired of having seizures... so I self medicate with alcohol. How can I get a specialist near me? I live within 2 hours of Detroit!
If you are in Michigan you can be seen by myself even via video.. You can call and get your appointment... Alcohol worsens epilepsy
Can bilateral fronto area epilepsy treated successfully by surgery
God bless you for this very informative video.
I just want ask you if fasting good to decrease seizure?
Can be in some cases but very important not to miss medications.. Ketogenic diet is a proven treatment for epilepsy
@@DrOmarDanoun JezakeAllahu khair for your kind reply Dr. Omar. I'm just eager to know if you have private clinic/epilepsy center which gives treatments for patients who come from abroad? 🤔
I don't.. I work at a hospital in the USA
@@DrOmarDanoun Hello doctor,I live in Wisconsin,which state and hospital you work? I would like to make appointment and come to visit.Thanks
@@DrOmarDanoun💐😊
Can we contact with you sir.
What is the best treatment for infantile spasm?
Does the DBS wires in the brain connect to the device in the chest ?
Correct
I had the sleep study they slowly took me off my medication. Of course I had one , I'm on 2 controlled substances and one other one . So the thing is i can 8 to 9 months without any. Then then other? Is I can miss one pill then I'll have one.
Asalamalykom sir can I contact with you?
Would these treatment options apply to seizures related to grey matter heterotopia diagnosis? My doctors believe my complex partial seizures are connected to me having brain lesions (PVNH) they detected in my MRI but continue to prescribe meds that fail continuously and learned that I may not be a candidate for surgery due to the locations of my seizures. Would I need to consider an alternate treatment approach due to my PVNH diagnosis or would it not make any difference? I appreciate any insignt you have to offer.
Hi , pls doctor can you recommend a good epilepsy center in the UK? Million thx
I am not sure but UCL is a good center
I know my chances are low of getting in contact with you but I would love the ability to talk to you. I am on 4 seizure medications and I still am having seizures. I had brain surgery in 2008 to have a shunt implanted for intracranial hypertension. That is when my seizures started. I live in a small town and there are no epilepsy specialists. My 7 day camera eeg showed fluttering in my frontal lobe but I had no seizure during the testing. I need help!!
Is it normal to have a seizure standing up.
I was dx c SLE since 2012, and having seizure since 2017, even though im taking my meds regularly I still having seizure. Am I drug resistant? Or is it because of my SLE. Im confused.
My child starts seazure in 4mons old we go to doctcor 2 weeks after .he take eeg for now and he is diagnose infantile spasm the neuroligist give him phenobarbital. Is it ok?he is now at the hospital. I need some advise.
Plz explain the mechanism of action of lacosamide combined with eslicarbazepine acetate
Lacosamide works on slow inactivation of sodium channels and Eslicarbazepine on fast sodium channels.. All antiseizure medications mechanisms are explained in the drugs video
ua-cam.com/video/TzjmXWBVKTM/v-deo.html
I have epilepsy and most of the time when I have a seizure my heart rate slows down so about 9 years ago I had a loop heart rate monitor put inside me they have told me that my heart rate has slowed down but not extremely badly or for to long just before they discovered this they were continuing a VNS for me and if I remember correctly I think they said that they can't give me a pace maker and VNS and now am going through the menopause my seizures have become a lot worse so I'm thinking about asking my epileptic nurse about the VNS so would you recommend VNS for me because am sometime having 3 seizure a day and over the years gone by i have tried about 9 different medicines and now am taking 3 different medicines a day for my epilepsy
My son got diagnosed with West Syndrome when he was 7 months old. Now he is 2 years 4months old. He has drug resistant epilepsy. We did all tests like Genetic.. Mri etc.. All tests were normal. We couldn't find the cause of sezures. He has developmental delays also. Please suggest me if VNS or DBS will be suitable for him or not.
Do you know about “slow waves”?
Yes.. What is the question? Please write it in a new comment not a reply here
My 19 year old daughter has a temporal-occipital brain tumor that is inoperable and causes seizures. She’s on 2 high dose meds and still having breakthrough seizures. Are any of these alternative surgeries useful in her case? I imagine a surgery to remove the tumor is most likely to be effective but the vein of labbe is running thru her tumor so they found it too risky to debulk and had to close up mid-surgery.
My son who is 9yrs still have seizures and take 4 medication, am not into surgery what other way
Please discuss with your neurologist.. If medications fail.. Then surgery is the way
I don't know if we have medication that boost cognitive as they take this epileptic medicine.
Hi, my cousin is on lamacto 600mg since then she’s not the same: falling, fainting, fatigue, can’t speak properly can’t study she’s even thinking to leave school so what can you advise us, we leave in the uk.
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
Do you know if there is an epilepsy neurologist in South Africa?
I am not sure. Probably there should be in the major hospital. Please ask and let us know
Epilepsy specialists in South Africa are at Constantia Hospital in Cape Town.
Seizures46 yrs lady, at early mornings predominantly 4 am to 7am once a week , lasting 2 minutes to 15 minutes. Attacks after 10 am is rare. Taking drugs frissium 10-0-20, lacosam
100-0-200, tegratol 400-0-400, levocetam 1000-0-1500. Getting treated since 20 yrs. Sir, pl advice.
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
If one of your patients have been seizure free for a number of years with a combination of Dapakote and keppra then the dosage was altered due to a low level
a new increase was administered and seizures became more frequent, every month, You remove Dapakote with lamotrigine 200mg 2x daily and increased Keppra to 2000mg 2x daily and still have seizures at the same frequency would you consider revisiting the two medications that worked for several years before the change? (generalized)
Sorry can't provide medical advice online
Assalam Alaikum, our child is sick, he is six years old and has been falling down suddenly since one month, he is not mentally well now and does not take medicine at all. And when we give medicine in food, he stops eating and often vomits.
Translate text with your camera
Assalam Alaikum, our child is sick, he is six years old and has been falling down suddenly since one month, he is not mentally well now and does not take medicine at all. And when we give medicine in food, he stops eating and often vomits.
Pls how can you help me for my son that has seizure disorder and many medications has been applied but still it seems not working,and the worst is happening now because when he pool he use to eat it his pool if attention isn't giving immediately.And he can't say any other word than hallelujah.pls I really need your help about his condition urgently.Your respond will really be appreciated.
Please see a pediatric neurologist for evaluation and treatment. I can't provide medical advice online
Hi sir my age is 22y I have magna cisterna cyst .my radiology doctor mention that only Megna cyst and not mention size. This condition leads to can develop any memory loss .i need my condition how to cure?
Likely the cyst is not causing any issues.. Hard to tell for sure without evaluating the case.. Discuss with your neurologist for evaluation and treatment if needed
My son diognose focal epelepsy last year he take medicine 1st phonebarbetal syrup 2nd is oxcarbaziphine and the 3rd is toperomite but untill now still seizure
Yes this is refractory epilepsy and might need the other treatments we mentioned in this video but discuss this with your neurologist
Hi is valproate suitable for simple partial seisures? I was on tegretol but had a serous rash so i was put on valproate..thx
Yes Valproate treats all types of Seizures. Please review the video on Valproate for full informations. Thank you
Valporate has caused pancreatitis in me and now medicine has been changed to levetiracetam 1000mg with clobazam 10mg twice a day... Still sciezure happens left with no hope
I’m on 3 medications… I’m so done!!!🤦♀️
look into deficiencies, if not already.
Why would you even mention Accupuncher I do holistic what did you do for me the medicine is not working for me and I’m not gonna keep trying and surgery will never be an option
Unfortunately there is no evidence that acupuncture helps epilepsy. Surgery is the way in cases of epilepsy that is resistant to treatment and with different types of surgery available, everyone can benefit
Hi , doctor I have a son that having drug resistant epilepsy .I'm from Kenya and I think surgery will work best for . please and kindly can I get your email address?
@DrOmarDanoun everything isn't cut cut cut
I had a video EEG but didn’t have a seizure, so the doctor said he couldn’t definitively say I have epilepsy, but said I probably do because he saw “slow waves” which indicates a seizure is about to happen, but didn’t. Does that make sense to you? Thank you
Hard to tell without evaluating the EEG... But we can see slow waves locally for so many reasons not just epilepsy
Just wow
Where are you located?
From Palestine.. Now in USA. Search Dr Omar Danoun for full information
@@DrOmarDanoun 😂 Judah won’t like that.
We are about done moving out of arkansas, my mom called an ambulance and i went away from god knows from where who knows when thursday. And i wasnt smart enough to not take the wrong drug from the hospital pharmacy. Youd think their $3000 pill would cost a bunch if theyd at least get it right!!! Now were staying at my sisters house next to the better hospital because they wont prescribe the goddamned naysilam for someone that has 7 seizures every time they drop to the floor. They always ask mom and dad “do you know how to use this” like yeah their reviving their son, they put you in the ambulance because they didn’t have any more, so they thought they wouldn’t drug me. I was delirious so i couldn’t not take the medication. I thought they were giving me a new one. Im sorry if im venting to you a little, i was just in the hospital in they are… something else. I have nothing wrong with anyone there. Id just like to meet whos in charge.
Salam dr. Omar, does Covid cause epilepsy?
Mostly not.. My own research showed that COVID-19 can cause seizures but in extreme cases having to be in the ICU
@@DrOmarDanoun My daughter was diagnosed with Epilepsy. She had her first seizure while having asymptomatic covid. Her mum and I have no history and her delivery was so normal. I am worried she might have a cause that needs to be addressed or the condition might get worse.
Best to get her evaluated by a neurologist
I keep getting them in my sleep 😴
Same
Can a poor diet cause seizures? Poor diet meaning processed foods(ramen noodles, frozen pot pies, hot pockets, fast food,etc), sodas, one meal, low or no fresh fruit and vegetables.
Yes they can trigger seizures. Please review the video on seizure triggers for more information
Charlotte web CBD water soluble worked for many.
Nerve damage in 1% of people is rare??
My dad was prescribed sodium valproate then they added gabapentin. Now he is taking gabapentin and phynetoin. Still has seizures every couple of months and he is taking large doses.
Hope the treatments mentioned here will be helpful
@@DrOmarDanoun not really helping. Sometimes he’s fine for 6 or 7 months but now he gets seizures every month and it’s always around 3AM in the morning. He was diagnosed with epilepsy after a minor stroke.
I also have same problem as your father
Doctor to reply us all or you choose some.
There is no epilepsy centre in my country Doc and epileptologists are rare to find that why i really need this help.
Hi , doctor I have a son that having drug resistant epilepsy .I'm from Kenya and I think surgery will work best for . please and kindly can I get your email address?
Drug-resistant epilepsy?? Sure, blame the epilepsy! Lol. Call it what it is - useless chemical coctails!
Hi , doctor I have a son that having drug resistant epilepsy .I'm from Kenya and I think surgery will work best for him ,he's four years now . please and kindly can I get your email address?
I am sorry I cannot provide medical advice online without evaluating the patient in my clinic... Please discuss with your neurologist
My 9yo daughter is currently in the hospital because due to COVID and an inability to tolerate her epilepsy medications by mouth.
Because her current medications: Briviact, Rufinamide, Epidiolex, and Clobazam-are not available in IV form, the doctors decided on Lacosamide.
My daughter has thus far has been medication resistant, resulting in the placement of a VNS about a month ago. Previous medication’s include Depakote, valproic acid, Keppra, lorazepam, and clonazepam.
Her seizures are generalized-focal and drop only, 2-15 seconds in length, and with a frequency of roughly every 20 seconds to 2 minutes. So, hundreds per day.
Here is the question: Is it possible that even though all of these other medication combinations failed, that lacosamide is some sort of miracle drug for her? If so, how does it work differently from the others that would cause such a DRAMATIC decrease in her seizure activity.
In the past three days, I have seen only a handful of seizures per day. How is this possible?? Any guidance you can offer is very much appreciated!
I am going to watch the medication resistant video as you suggested and I will also post this comment/question there.
Thank you!!!!