✅ Get evaluated by Dr. Omar Danoun directly, book your online appointment now (for age 16 years and older) appointment.dromardanoun.com/ In USA, please call the clinic
Hello, Dr. Danoun. I would like to first say thank you for the videos you post here on YT. They have been very helpful to someone like myself, who has recently been dealing with such things. I was delighted to see that you work out of the very Henry Ford system I have been receiving treatment from. My current Neurologist is at the West Bloomfield hospital office. My first question: Is it possible to have Myoclonic jerks during sleep, that result in intermittent tongue biting? Second question: Is it possible to have Myoclonic jerks that don't show up on an EEG? Thank you for any advice or feedback.
My family and I were diagnosed with genetic juvenile myclonic epilepsy. From my experience in caretaking, my parents and my sister, 1. the jerks in the sleep DEFINITELY happen. I have woken up with teeth ridges embedded in my tongue, and so have my parents and sister. It's very painful. No mouthguard seems strong enough for seizures, either. My jaw is almost completely locked. I'm on 5 200mg of Topamax, Clonopin, and Delta (the "diet weed" 🤣) and the grace of God (God the most. 🙆🏻♀️🙏🏻) 2. Absolutely 💯! They told my parents that they were "fine" and had them believing they didn't have epilepsy anymore. 😳 My mom died in January. 😭💔 I appreciate doctors, but they don't know everything, and they are not God. I pray that this helps. I pray that you and everyone heals. God is our Great Physician. Doctors help us when we need them. I pray that He guides them. 🥰🙏🏻🤟🏻🕯🕊
Since writing my original post, I have been officially diagnosed with Nocturnal epilepsy, and am currently being treated as such. The medicine prescribed to me have been so far effective. I am still in the process of getting full control over my seizures, but have been getting positive results. Thank you for sharing your story. May God be with us all.
@@Great-Beard-of-Zeus I am keeping you and everyone in my thoughts and prayers along with your families and medical teams. I'm so glad you got a diagnosis, answer, and positive results. I pray that you continue upwards! Thank you for being so wonderful to my reply, too (I get talkative during the moon phases and have no idea where I am 🙈. So thank you for being kind at my rambling at you.) 🥰🤟🏻🙏🏻🕯🕊
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
I have Epilepsy and I have either GTC’s or Absent type, It’s due to my EDS. Ehlers- Danlos Syndrome is known to cause Epilepsy in people. As well as possibly the head injury that I sustained in a car accident. Myoclonic seizures are more common in people with EDS, too. I take Topamax for Migraines.
I’m 27 and was diagnosed with JME in feb 2023. Sucks so bad. Lost my job and my “friends” there were the only friends I had. I have the best family to support me. But man it really sucks
What did you do for work? I have a friend who’s in the middle of getting diagnosed with JME. About to lose his career. Anything you can do to salvage your career once diagnosed? Thank you
@@StrictlyFacts24 i was in sales. A very good and easy position but couldn’t handle it. It affects everyone differently. It doesn’t just make people incapable of their duties.
I had jme for 10 years and I through college and have a job now . I do IT - it was so hard to get used to the medication. After time I am now married and l have kids. Focus on yourself . Health , food, sleep .
@@MKunstoppable i had when i was 9 month came back when i was 22 and then disappeared for two years came back 2021 I got a bit worse i am really terrible with my medication i do take them but l wasn’t very good at following them i take them late and i sometimes forget and it comes back Can you advise me how i can get better at following my medication But to be honest for the last past months i was good with medication but i get attacks which I don’t why i guess as the doctor said it’s lack of sleep I want help so i can get better I want to work and go out etc can you give me some advice
First of all, thank you so much for sharing your knowledge for free. I got diagnosed with JME in January (I'm 22 years old). My seizures happen only during my sleep and when I wake up I have a headache and feel weak and clumsy. I'm currently on medications but despite that I had a seizure only yesterday. I woke up at 2:00am because of it and felt the same clumsiness. There wasn't a headache this time though. And over the past few incidents the intensity of the seizures and it's after effects have decreased. I wanted to know what this means. Is it just my body getting used to it or are the seizures actually getting less intense? Is this a good or a bad sign?
I started having seizures when I as 11 years old with absent seizures. Then I got PNES a year later and got tonic clinic seizures and from that point on I’ve been having seizures early in the morning until before bed. All week and every month.
i have just had my first seizure , I'm 18 years old from Austin texas , Monday night December 11th after feeling sick , and having a long aching headache from when I woke up that day , I blacked out from my memory , but from what my mom and dad told me , they found me falling out of my bed head first seizing , while fully stretched out foaming from the mouth , an ambulance took me to the ER , and I went into another full on seizure in the hospital , its still foggy to me , and hard to believe it even happened , and no diagnosis when I left , just the tests with no conclusive result , eeg / MRI , let me know if you could help me even get a rough idea of whats going on , please let me know
Dear Dr. Omar Danoun, I have generalized epilepsy and I have a treatment called keppra. Do you know if there is a cure in the pipeline for generalized epilepsy, any promising research and trials that you know of? Many thanks.
Hello I live with generalized photosensitive epilepsy and unfortunately there is no cure for our specific condition unlike focal epilepsy where seizure activity happens in one part of the brain and depending on that some patients can have that part removed Keppra is an okay medication I e currently being weened off Keppra has a lot of side effects that effects your psychological health speak to your neurologist about other treatments if you are experiencing these symptoms also research the modified Atkins diet at the adult center for epilepsy at Jhon Hopkins
Hello!!! I've been playing phone tag with nurses trying to schedule to see you and for my EEG. I had another grand mal/tonic clonic seizure and was in Beaumont Taylor overnight the 10th/11th. Wanted to talk to you about possible reasons, maybe meds. Sorry to hunt you down. Hope you, wife, and babies are well!!
Sir..i have jerk issues while sleeping like my leg feet fingers bent automatically and my hand ja automatically lifting that and my body is jerking..djring that time my sleep.got totally disturbed.. this is got after my 5th month abortion during high bp..doctor checked afteer eeg and said no issues and he told that it will be cured within 10 days but jts been 6 months.no improvement.. im taking brainvitgold topzene hanalol and lonacare tablet..will it be permanently cured?? Kindly advise
Hi, my 11 years old daughter is having the same symptoms, we are giving Keppra, Valparin and Clobazam. She is getting a seizure in the early morning. Please help me how to control her Seizure.. I don't want to put her on a Keto diet.
Hey Doc can you do a video on Zeiss 1 lenses for photosensitivity epilepsy? I have generalized JME with PSE The Mark 2 spectacles under the research of Graham F.A. Harding was never brought to production but the Zeiss Z1 lenses are the most updated lens with medical research I would love to hear your opinion while I continue to research more as well thanks as always ☪️💜
I have these i think but is rare that a doctor sees it because it doesnt happen everyday either it doesnt happen on call it happens sometimes when I wake up it really sucks i had a ekg egg blood sample analyzed but each have concluded with negative results but i believe cause at the time of testing i wasnt having any i take devaporex medication
Hi Dr., I'm from the Philippines. My 18 months old has Atonic Epilepsy according to the Doctor base on the result that I gave. I was thinking, if we can do another EEG test for 2nd time?
Hi sir im from india 22 yrs old im having trouble falling asleep because whenever i try to sleep i wake up with a jerk im not getting good sleep ive been having this problem for almost 6 months.
Self harm during sleep having no consciousness, i.e injury on the forehead, face, elbows and knees. Fallen on the floor during sleep from bed, with no consciousness. Immense pain in head after awakening. But remembrance of nothing what happened. What type of epilepsy is that?
I call my myoclonics terrified dog syndrome. Those poor guys. Things would go flying out of my hands, litteraly across the room. They were so afraid they wouldn't come near me in the morning when they were brutal.
The neurologist i saw said i had eyelid myoclonia and drugs dont really work for it. I think mines realitively mild from what ive read, really only an issue when i close my eyes and never lost consciousness, had it for20 years now
I have jme I’ve had it since I was 10 and I’m 21. Last year I had vns therapy surgery. When I was around 12 they gave me topamax worst idea. I became a robot and changed so much. I’m thankfully off that.
Assalamualaikum doctor I was using carbamazipine for 5 years I face alot of skin rash problems on such medicine 💊 after this I switched to limotrigen from last 5 months I face alot of side effects on taking limotrigen like headache legs weakness and heart beat doctor suggest me to take Triomega Fish oil for heart problem and also taking folic acid tablet with also rivortril tablet Clonazepam in this running period. When I was taking carbamazipine I was just taking only this tablet which cause only one side effects skin rash in my head no more then this The main purpose of comment is to why not I quite these all medicine and shift again to carbamazipine what's your suggestions doctor plzz reply ???? I have Generalized seizures in my EEG report
Sir,, my son have an epilepsy ,in his left side of the brain .,He is 17 yrs old..,sometimes he fall down to the ground ,.Dr told me that he have generalised epilepsy .,what kind of epilepsy he have.???
Sir i was diagnosed epilepsy about 4 years ago when i was 18.At that time i was not know much about it ,My doctor used to gave me valproic acid along with vit D supplements.I was not taking med regularly so seizures were increasing day by day.After 2.5 years Doc replaced the med with levetiracetam.Now I'm taking it regularly twice a day yet I'm not seizure -free completely.Also I'm trying my best to follow do and don't-s of disorder.Can you plz tell me what the actual problem is??
Extremely important to follow medicine regimen same time each day and getting proper sleep self discipline when it comes to the “don’t” is a challenge within itself but life is too important to let the dont’s win
My son 9 y/o (28.5 kg) started with daily tonic clonic complete episodes during sleep time, partial events (he laughs and shakes during activity) during daytime. He’s taking keppra, started one month ago, 1.5ml one week, 3ml other week, still had daily events and Dr said go to 4.5 (nothing happened) and now we are at 6ml twice per day. Can you talk about How long does the medicine to inhibit the seizures? Or when is time to consider other option? I’m confident the dosis was little and 6ml will do the trick but I want to know how long should we be seeing the 100% results on keppra. My Dr doesn’t communicate very well 😒 p.s. thank you for al this info! You are making me useful for my son, sometimes I feel hopeless and I see your videos and feel more informed 🙏🏼
Can builmia cause seizures? With messed up electrolytes because I’ve had this ED for 5 years and my seizures are getting worse and I have had eeg and it didn’t say I was
Yes. ED are not just a psychological problem... they also lead to potentially life threatening physical problems. This is why eating disorders are the psychiatric illness with the highest mortality rate... about 10% of people with an Eating disorder die. Starvation, malnutrition, dehydration, electrolyte imbalances, bradycardia (very low heart rate), muscle loss and all lead to the brain not getting the nutrients is needs. This can lead to brain fog, cognitive changes, even seizures. These things can also independently effect your heart. Low iron levels in your diet can deplete your bodies iron store and result in anaemia... being anaemic means your blood cannot carry as much oxygen. If your heart doesn't pump enough blood to your brain (eg due to low heart rate, arhythmia, or loss of heart muscle due to insufficient protein, unhealthy or extreme weight loss, malnutrition, starvation, electrolyte imbalance or low blood volume as in dehydration), your brain doesn't get enough nutrients to function and seizures can occur. Provoked seizures due to malnourishment and nutritional state are not epilepsy, and are not treated by a neurologist or epilepsy medications. EEG will likely not show unusual brain wave activity unless you are having a seizure while being tested. The only treatment for provoked seizures is to fix the problem causing lowering of the seizure threshold. in the case of ED is most likely due to the effects of disordered eating, and rectified by treating the cause.😢
Carbamazapine caused me atonic episodes to n daytime. Keppra caused my tonic clonic seizures at night. Valprouc acid caused me distonia during ng the night.
Omg.Kepra sucks. I’m so depressed and anxious and bipolar. I don’t know if it’s the medicine that makes me sick. But man it sucks. The worst part is I was fired because of the time I missed from being sick. I couldn’t have a dr retroactively give me time off. So I don’t have a doctor to talk to or be treated by and I don’t have insurance anymore. Without a doctor I can’t try another medication
@@mumofcuties5873Sorry to hear about that, as soon as I got diagnosed I was put on Keppra and raged all the time and didn’t do anything but get home and sleep and not want to work. Thank god I did not have hallucinations though but I was off that after two weeks. Worst two weeks of my life…
My oldest nephew takes it and it does well with controlling his seizures so that’s all that matters to me. I have Epilepsy and I take a sister drug to Keppra called Briviact. I have either Absent seizures or Generalized Tonic Clonic ones. Mine is due to my Ehlers- Danlos syndrome ( EDS).
