Management of Nocturnal Seizures
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- Опубліковано 3 лип 2024
- Seizures associated with sleeping present unique challenges for patients and families. Sucheta Joshi, MD, Neeraj Kaplish, MD, and Nicholas Beimer, MD discuss common epilepsy syndromes that feature nocturnal seizures, the various risks and consequences of these seizures, and special treatment strategies. They will also discuss the relative value of various safety measures and approaches to detecting and responding to nocturnal seizures. NOTE: the first two minutes of the panel discussion were cut off. When the video starts, Dr. Kaplish is responding to the question "Can you describe this relationship between seizures and the sleep-wake cycle and what it is about certain stages of this cycle that makes seizures more likely?"
Mine I believe always start at the bed. A commonality is I always laid down with a lot of milk chocolate. I was hospitalized and put on Kepra. Came home and seized. As well after consuming cannabis for 50 years I had slowed way down on smoking. The neurologist said High’s and lows of cannabis can be a trigger. So I have just been using a cannabis infused olive oil. Thank God so far on just CBD I have been OK. Peace be with you all.
Wish the cannabis worked but I had nine one day back to the hospital I went. Don’t remember any of it. Cannabis might work but the dosing I don’t know. Cannabis does not go well with anti seizure meds. Felt really strange when I had a hit the other day.
I was really hoping they would touch on sepsis and epilepsy.
I'm 50. I was diagnosed with nocturnal epilepsy about 13 years ago. After going without for 11 years, last February and just last week, I had them. I recall the postictal from last year. I thought it was bad. The one I had last week was much worse. Every muscle in my body from head to toe was sore, headache, body felt heavy when I walked, balance issues, weird sensation in the front of my head/mind. These symptoms lasted until this past Tuesday. If someone here wants to study me, please do.
Hi, Jose. That sounds really difficult. I'm sad to hear that these seizures are back. If there is any way we can be of support, please feel free to contact our Here for You Helpline at 800-377-6226. Here for you.
@@EpilepsyMichiganMy brother experience same thing, i need help
I'm surprised that diet wasn't spoken about more. I had night terrors as a kid and they have almost evolved in to the odd nocturnal seizure now. Diet helps but am wondering if there is a link between night terrors and nocturnal seizures?
My daughter had Night terrors When she was younger and now she has nocturnal seizures that are brought on mostly by hormonal changes during her cycle.
Waoo I have a nightmare every time I have a seizure in my and the nightmares are always the same me stuck in a place or going down hill and as Im trying to wake up I can't I haven't been diagnosed with it but Im 100% that I have nocturnal seizure problem it always happens about 4/5 am maybe 6 am any help please if you have more knowledge than me thanks
@@funchanel1792 what I use to do (sometimes it helped) is to know when it's likely to happen and set an alarm to wake yourself up just before it's likely to happen. This could help? Apart from that when I was too much meds wasn't helpful. And change diet. Hope it's helpful
@@thefoodproject Im so thankful for your advice as this is new to me im booked to see a neurologist next week but this is so hard to believe and explain my seizure s had gotten worst after contracting COVID do you take medicine for your seizures and so do they help you and have you been tested and diagnosed Im sorry to bother you so much but this are rare case's and my life may have to change completely as I don't think I should be working in stressful job's like im at the moment I will try doing what you do and set my alarm to 4am that is wen I normally have my seizure Thanks again for your reply and Im glad to hear your okay please take care.
@@funchanel1792 Its all good. I can't work stressful jobs so try and work from home. I take Clonazepam for night disturbances but have been chatting with my Dr about medical marijuana. He's keen to try anything as it's not a common issue. Bless you. I hope u get thru it.
Setting the alarm is to only break the sleep cycle. Try going back to sleep after so u don't get over tired. Sleep deprivation is a trigger 😊
I was diagnosed w frontal nocturnal seizures about 6 years ago. Was under control using lamotragiene 100mg er for 5 years. As of a year ago i started to feel super tired every day. No change in diet or exercise ( 27 years old 205lbs 6ft). The last 3 months i have been wetting the bed 1-2 times a month. Assuming this was a seizure i went to neurologist. He order blood work and came back at 1 for my lamotragiene level. He doubled my dose and i continue to have these bed wetting and extreme tiredness. Im trying to seek 2nd opinions but its impossible to get an appt. Im terrified by sudep and want to get this figured out. If you can help i would appreciate
Hello, Andres. My name is Renee Roederer, and I'm the Community Care Director for the Epilepsy Foundation of Michigan. Thank you for connecting with us about this. I'm sad to hear that you've been experiencing this, and that it's been raising questions and causing stress for you too. I'm wondering if you might give us a call at 1-800-377-6226. We could talk about this in more detail, and we could recommend some places to go for a second opinion. We'd be glad to do that. -- Renee
Ive been suffering from nocturnal seizures for four years now. I really am not getting the help I need. I recieve disability pay but that isnt helping. It has changed my whole life around. I just sit to myself lots. I can say...before I started having seizures four years ago, I would have vivid dreams and speak about them online. Also milk chocolate and white bread is not good before sleep.
@Shug Kapone Damn bro.. I genuinely hate to hear about your situation.. My son has been having them for about 5 years now... Have you tried CBD oil?? It worked for him but it's just high...
@@LouisianaNiiji wooooow maaaan Im sorry to hear that Bro!! How old is your Son?? I look at it as a blessing now. If you havent PLEASE READ EZEKIEL IN THE BIBLE. He suffered from seizures. Harriet Tubman was epileptic. Tupac had one. Rick Ross and Lil Wayne have em. Many others. I try cbd but the bud kind. It helps. Four months without a seizure. I kept staying up late one week then blam had another one. So what I eat, food, sleep, less stress. Learning myself better and thankful. Onnnllly thing I hate is I was 33 when mines started. Now Im out here going through it. Fake friends and so much others. Man. Its tough but Im learning life better.
@@ShugKapone_ShuggieSeize he's 15 and his started out as what they call "tornado seizures" and when he stopped the he stopped taking the depakote and the keppra they slacked up alot but now it's nocturnal... I don't think I read about that in Ezekiel I'll make sure to check it out, but I know Matthew17 :14-21 and Mark 9:14-29 speak on it or at least in my opinion they do...
@@LouisianaNiiji hey Bro I would Love to connect with you somehow. I have a 15 year old Son as well. It seems since Ive been having seizures, our connection has been falling. Im not able to provide like I want and should but I still do my best. The fact you have a 15 year old going through it, I CAN ALMOST GUARANTEE YOU WOULD RATHER IT BE YOU HAVING IT HAPPENING TO YOU AND NOT HIM. Its tough Bro. Praying for yall daily.
Mouth guard with help with sleep apnea or anyone with snoring problem great for when you have seizure or after seizure too..it help stops you biting your tongue when your roll on your side and bite your tongue also after you use it to talk proper as you cannot when you tongue is so sore because the wound on your tongue constantly rubbs on your teeth is so painful for 2weeks ...so mouth guard helps try it..silicone types melt in hot water..cost is $2
Please what mouth guard product?
@@amyamy1727sports rugby mouth type
I'm a bit late but I do have some questions and info about my past that might help.
general info: I have nocturnal seizures that, as far as we know started at 18, I'm 29 now. My father has grand mal seizures that started when he was 18. I was told my left frontal had the most activity in a test and it was later on said to be centrencephalic. Along with the seizures I sleep walk. I also have some type of aphasia.
past: stayed up late constantly, various common drug use including psychedelics from 14-18 years old, and near death experiences as a child.
questions I've already asked my neurologist that haven't been answered or always forget to ask:
I've been told my aphasia came from the seizures, will it get worse and is there something similar to that for reading? There are short instances where I feel like I have dyslexia now.
Every time I tried melatonin I would have a seizure. If melatonin was the reason for the seizures, why would that be? overload maybe? plus if I can't take that what would be safe to take?
Would nightmares and or stress activate seizures since both also activate panic?
Why would left frontal get changed to centrencephalic?
I didn't sleep walk before the seizures. The sleep walking was ridiculous. There were times where I'd wake up fully clothed at work. Would the seizures I have bring the sleep walking about or would stress be the more likely cause? (Don't worry the sleep walking stopped after being medicated and I have things to stop me if it were to happen again).
my husband has horrible seizures only at night. and doctor's have no idea whats causing them. the increase his script with every new seizure. he is now on the highest dose. we have figured out on or own that cutting out carbs completely from his diet and only eating completely fresh and all natural foods has helped a lot but its really had and he still has some seizures. the seizures cause him to be very violent as he is coming out of the seizure. do you have any ideas or recommendations for us?
I'd be happy to talk with you about this over the phone. Please contact Epilepsy Foundation of Michigan at 800-377-6226. If you're not from Michigan, you can find a local Epilepsy Foundation affiliate at epilepsy.com.
Get of the meds he needs sleep he might have a bleed on the brain and may need mri .& angio gram to see brain in 3d ...get off the meds they will make it worse and he will get psycho on them when you increase
Keppra would best and safe but if he get migraines behind eyes then he needs to take marijuana cookies or cake if he could just eat half a cookie mix in butter put on Toast he might be old school gamer or got head injury when he was younger which will cause this ...the brain might have old scaring and be bleeding from there ..need to have pressure released as it could be the blood causing it
Might be brain bleed and could be growing needs to have removed as the pressure will cause night seizures have a scan find if theres any old scaring on brain the bleed might be under it the scar or from old head injury ....best meds medcinal marijuana ...keppra knocks you out and stops you from eating as most of them do you will hate food and only like certain foods fruit etc but I will make you so emotional
There is a “flight” mechanism that kicks in when they are coming out, this is common and well documented, so it sounds normal. It’s important you do what you can during that phase to 1. Not get hurt, 2. Secure the home so he can’t hurt himself, like going off a balcony or something. They’re in a very vulnerable state and not themselves in those minutes. Our son can go through this state for about 15 minutes following a strong seizure episode. But this is not the result of the medication he’s on, it’s just a bi-product of the seizure. Be well
I had my first nocturnal seizure when I was 26. I was put on Dilantin and slowly was weaned off of it after 2 years. I then had another seizure. I was on Dilantin for 20 years and purposely did not have children because Dilantin was known for causing birth defects. Every EEG after my first one showed normal brain function. I was told I had seizure disorders, not epilepsy. I also lived in a very old house with a lot of dust. And I was in a very stressful marriage. I divorced, moved out of state, and slowly weaned myself off of the Dilantin. I am now 69 years old, happily remarried, and haven’t had a seizure in over 30 years. I always wondered if my nocturnal seizures were from the dust in the older home, perhaps from the air ducts not being clean, and the stress from an unhappy marriage.
GOD bless im so happy that u overcome your seizure hopefully i also overcome my seizure in the night. nd for how many years until now I always pray to GOD above to lift me up in this kind of disease. what do u do to overcome ur seizure
@@novinaruales7539 I think my nocturnal seizures were mostly caused by stress from an emotionally abusive marriage. After my divorce, I SLOWLY weaned myself off. But seek a Doctor’s advice to see what is causing your seizures, and see what he recommends. Do NOT ever go off your medication cold Turkey!
@@novinaruales7539how?
What was wrong with your home? I might be going through the same
@@mataperro818 it was over 40 years ago, and it was a home built in 1918. I was young and knew nothing about air ducts and cleaning them. I do remember dust would build up very often even after dusting the day before. I now wonder if the ducts needed to be cleaned and if years of breathing dust, especially at night, proved toxic. Best to get your home checked.
I've had my nocturnal seizures, first time in 2013. Second one Dec 2020. Third was last night 20.10.2021. What do you make of this frequency? kindly advice. what should I do?
I had a Ct scan on the second one, the results were okay according to the physian.
If you are not currently diagnosed with epilepsy and being treated for it, you should definitely see a neurologist. Even if seizures are infrequent, it's still important to get a proper diagnosis and appropriate treatment. A negative CT scan does not rule out epilepsy. Many people have normal CT scans or MRIs and still have epilepsy. Similarly, a normal routine EEG does not rule out epilepsy.
Is there any point in seeking treatment?
From what I understand, these seizures don't pose a risk for personality changes and medication doesn't always cure it.
Also, I have temporalmandibular joint dysfunction and have noticed that I am more likely to have seizures when my TMJ syndrome is more severe.
Are there any studies that have examined a possible link between TMJ syndrome and nocturnal epilepsy?
@Dude Sweet Thank you for the information, your kind words, and for sharing your story
Yea, the potential for addiction with those drugs scares me, but perhaps trying to quiting and the withdrawal scares me more. I'll take your words to heart
Honestly, thank you for your reply. I wish you all the best
I have a venous malformation that is suspected to be the cause of these N/S. My night seizures are triggered by high stress in my life. Recently I lowered my medication and had a seizure during the day - with no added stress in my life at the time. Most calm day, not a care in the world. I know there's not a neurologists out there that can figure out why it happened other than my brain is now dependent on medication.
My son has had two of these over the past 3 years and I’m very concerned about him dying, if he sleeps alone. He is on Kepra now, but can someone talk to me about dealing with this lifestyle? I’m totally new to this. And I can’t leave my child alone at night now.
The risk of SUDEP (sudden unexpected death in epilepsy) in children is very low. The best thing you can do to reduce his risk is to see an epileptologist at a comprehensive epilepsy center (if you're not already doing so) and keep working toward the goal of "No Seizures, No Side Effects." If two appropriate and well-tolerated medication trials have not brought his seizures under full control, it's time to start considering other treatment options, including brain surgery, neurostimulation therapies (vagus nerve stimulation or responsive neurostimulation), or dietary therapies (ketogenic diet, modified Atkins diet, etc.). In the meantime, it's important for children to have privacy and a chance to develop independence, so sleeping alone should be a goal to work toward. A variety of devices exist that can alert caregivers to a seizure (some are listed here: epilepsymichigan.org/page.php?id=360 under "Useful Links/Seizure Detection & Alert Devices). If your son consistently makes any noises during a tonic-clonic seizure, even a simple baby monitor can be effective in alerting you. Please feel free to call us at 800-377-6226 to discuss this further.
Get a mouth guard ..does he have xbox ps4 or any device he uses till early hours of the morning ?get him off these do not take keppra or lamictal or lamytrogine meds get him good sleep exercise & diet.. cbd oil is awesome but not needed ..ihave 20years first hand experience with epilepsy and have recently seen a rise in friends who are top gamers in there 30s to 50s having sleep seizures ...including myself .. so yes understand he wont die your son and can live a great life ..hope this helps
I am on the night shift of watching my daughter. She had a 20min actual grand mal seizure. Its scary.
wow, you are really like my father, he is really really sad and crying alot when i waking up again, he think that i died because i am not breathing 1,5hours because choking on my saliva. my dad come to my bedroom when my mouth already full of saliva.
@@groundbreaker5525 wait?, but my doctor give me lamictal 50mg, she said that is my therapy med (lamictal 50mg 1 dose per day) need to be consumed alteast 3 years without another seizure. then i could stop the meds.
I’ve had 5 seizures back to back in my sleep non provoked.
,, seizure free for 4 years,,,, should I still be on my medication? Lemotrigen ?
How did your seizures stop ?
My wife began having seizures all the sudden this past January following gull bladder surgery . Her seizures only happen 10-15 mins after falling asleep and they only happen when she is having her menstrual cycle . Her first time having seizure she had 3 grand mals in 1 day and in the time since has had 3 more seizures making a total of 6 seizures since January . We are in sept. Now . I can’t seem to get any answers from anyone as to what’s going on. What I’m hearing in this video sounds spot on as to what’s happening with my wife however we have seen 2 neurologists and 1 says they saw epileptic activity in the frontal lobe and the other said they saw nothing so no medication has been prescribed . I’m at a loss at this point as to what to do .
If they gave antibiotics after surgery then that can be the cause. Gut Microbiota may have gotten out of balance and candida may have built up. Gut damage is a huge cause of seizures, but dr.’s don’t seem to address this. Building the gut back after antibiotics can take extremely long to heal.
@@DRUEX23 we definitely thought it was related to the surgery however all her blood work shows normal aside from thyroid function . They diagnosed her with Hashimoto’s thyroiditis and have prescribed a thyroid medication however this doesn’t explain the seizures
@@DRUEX23 she also came down with jaundice before gull bladder was removed her bile ducts were plugged and needed a stint for 8 weeks my initial concern was brain infection from jaundice however 2 ct scans have shown no lesions on brain .
@@DRUEX23 she had her gull bladder removed in nov. 2020 but had to keep stint in for 8 weeks following surgery . She had stint removed in January 2021 a week after stint removal is when seizures began and have been happening ever since . I’ve been with my wife since we were 14 yrs old and she has never had seizures before .
If a neurologist saw epileptiform discharges on her EEG, she likely should have been started on an antiseizure medication. The fact that another neurologist did not see anything abnormal does not mean that she doesn't have epilepsy. Because an EEG is just a brief glimpse into the electrical activity of the brain, some EEGs may not catch any abnormalities, while others may. If she hasn't already, I would recommend that she see an epileptologist at a comprehensive epilepsy center. You can find a list of comprehensive epilepsy centers at the National Association of Comprehensive Epilepsy Centers: www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/. You can also call the Epilepsy Foundation at 800-332-1000 or visit their website at epilepsy.com.
I'm from Manipur, India. I've been suffering from nocturnal seizure, I'm also a sleep walker in my childhood days. My first time seizure experience was in 2016, 2nd time is 2017,and 3rd in Dec 2021. My doctor (neurologist) gives some medications i.e topiramate and levetiracetam since 2016 sometimes lowered the medications milligrams. That control from seizure. But I can't stand or walk for a long time, due to my back pain,my doctor said it's because of my seizure, sometimes I use painkiller to lower my sore in back. Please give me some advice/tips to get rid of this back pain. 🙏🙏🙏
How you control your seizure
Are they medications for nocturnal seizures? My 14yr old has them.
Whether seizures take place during sleep or during the day typically has little bearing on medication selection. It may, however, impact the dosing schedule. Please feel free to call us at 800-377-6226 if you have further questions.
I have a deep sleep seizure
Night majority even if i sleep in day once it was happen
How to overcome from this
I have them. Currently looking for new medication
Keppra or lamotrigne works very well with me. Those are 2 id recommend to you
I'm also a nocturnal seizure patient but my doctor give me topiramate and levetiracetam.These would help me for about 5 years.Please try this.From India
My Elder brother is 36 years old. He has seizures every night. Three to 4 times a day. He has been suffering from this from the last 35 years. Is there any cure possibility? Would highly appreciate a revert.
First, you need to determine if his diagnosis is correct (misdiagnosis is surprisingly common). Second, you need to determine if he is taking his medication as prescribed. Third, if he's still having seizures despite trials of two appropriate and well-tolerated antiseizure medications, the chances of a third or fourth medication working are low. If this is the case, he needs to explore other treatment options, including epilepsy surgery, neurostimulation therapies (VNS, RNS, or DBS), or dietary therapies (ketogenic diet, modified Atkins diet, or low glycemic index treatment). These options can bring hope of significant improvement. With temporal lobe surgery, for example, 60 - 80% of patients become free of disabling seizures. I'm not sure where you live, but if you have access to a comprehensive epilepsy center, that would be a good place to start.
Is he on a ketogenic diet? That can help limit seizures.
Are there permanent cures to nocturnal seizures?
What we always hope for are the best possible interventions for a given person having nocturnal seizures -- medications or surgery -- so that people can become seizure free. About 2/3 of people can become seizure free on an anti-seizure medication or multiple medications, but sadly about 1/3 of people continue to have seizures.
Should people with epilepsy be considered disabled or is that a given?
There are different definitions of disability. Epilepsy is considered a disability under the Americans with Disabilities Act (ADA), for example; and the Social Security Administration has different levels/types of epilepsy in their "Blue Book" that is used to determine eligibility for Disability benefits. Individuals with epilepsy also have their own personal definitions. Some with epilepsy identify as having a disability, while others don't. So, it really just depends. Please feel free to contact Epilepsy Foundation of Michigan at 800-377-6226 if you'd like to discuss this further.
Ive just started receiving disability but it doesnt help. I suffer from nocturnal seizures for the past four years. Im from Atlanta. I reached out to Myler Disability out of Utah to help me receive my disability approval