It took 2 years for me to get diagnosed. I've always felt unsure about my diagnosis until you described yours. You said almost the same things as me. During my psychological treatment I got assessed for Autism and they found that I was Autistic which contributes a lot to the stress and seizures. Only took 30 years.
I have conversion disorder which is the pseudoseizures and it’s where my emotions become too much for my brain to handle and I have the psychical symptoms of A seizure but inside my body I was find psychically fine but mentally not. I had very severe anxiety and ptsd I’m not asking for support or petty I just want everyone to know this is A real diagnosis these people are NOT faking these things I have been officially diagnosed for two years I’m only 14 my seizures and anxiety takes are completely different.
I had these too when I was 13. I’m postpartum from twins now and am experiencing them again. Do they affect your brain? Is this going to make me stupid?
@@brookelynelanee9179It is actually stupid what you’re saying. I think your pregnancy hormones fuck you up. It’s an insult the fact you say having those seizures is going to make you stupid, it’s not. Neither Epileptic or Non Epileptic Seizures make people dumb or stupid. You are going to be fine, take care of yourself and don’t carry that baby if you’re feeling a seizure is coming, as a matter of a fact try to be away from things than can harm you if you fall.
My panic attack feels like a seizure ,I get numb all over ,feel whole body stiff and chocking ,it's HORRIFIC,can't walk ,can't hold a glass of water ,it lasts for 30 minutes and than goes away
Thanks for uploading this. I have epilepsy both petit mal and grand mal - i remain conscious throughout the tonic-clonic seizures so feel my body going rigid, the mouth pull to one side, my eyes roll back, my arms extend, my legs flap like mad, jerky breathing, foaming at the mouth then hear the sort of snoring sound nearing the end of the seizure. At the end of these big seizures I'm super-emotional and headachy. When I had a psychosis (?) form of anxiety and depression so a major breakdown in 2016, i had shaking all over very much like an epileptic tonic-clonic seizure except that i could still walk and talk albeit very shakily. Just exhausting
Currently going through this. Doctors think I’m crazy, I’ve had CT scan, CT scan with dye, EKG TONS of blood work and every single time they tell me it’s stress related. Getting properly diagnosed is such a battle 😢
I was diagnosed with stress related NEAD or dissociation seizures 8 years ago. There were no forewarnings. The only physical, observable characteristics witnessed by others were a vacant, blank expression and not responding to external visual or audible stimuli. "Lights on, but no-one at home" Curiously my right arm would be raised to a half height position. Like going into a room and forgetting what you went in for. MRI and Cat scans were inconclusive. Stress was thought to be the cause and I was referred to the psychologist by a world leading neurologist in NEAD, Prof. Marcus Reuber at the Sheffield Hallamshire hospital. Psychologist was a big help. Seizure free now for 6 + years. Glad you are in a better place.
@@mediwise2474 Fluoxetine (antidepressant) and Lamotrigine. I was assured that the initial prescribed dosage was reasonably low. Also advised to consult psychologist if I was to be weened off them. I ventured to ask that the dosage was reduced after around 4 months.
@@mediwise2474 I presume that you are contacting me to further your understanding of this condition. It will allow you to get a better understanding of this particular condition and as such benefit others. Regrettably, I value my anonymity and as such I am not willing to be contacted. I sincerely hope that you have every continued success in benefitting people with this malaise.
I’m so glad that they don’t really happen anymore. It was really scary when they happened. Now they have stopped it means it hasn’t affected your normal life which is amazing ❤️❤️
Pillar Family I have dissociative identity disorder I get what's called dissociative seizures also known as pseudoseizures these happen when I dissociate into a certain alter I have no control over these because when I dissociate I lose control over my psychological and physical state it's a psychological reaction causing a physical reaction I have no memory of the moment I black out and I experience anemisa I only know from what people tell me I turn blue because I experience chronic breath holding in that state and turn blue and sometimes pass out I just try my best not to dissociate
Did anyone experience delirium after there non epileptical sezuires??? Plz tell me my sister is experiencing delerium like symtoms after having non elliptical sezuires
This really made sense to me,very well described and closest i can kind of describe what ive had. The first time you talk about one coming on is exactly how i felt a month ago and was the first time id had a seizure and felt it coming on,though every time ive had them they are more intense and cause me to blackout and from what ive heard from people around me,tense up all over and once try to climb out a moving car. Not been diagnosed with anything and have also been for the same scan and was told i was fine so this really connects with me and gives me something to look into. Thanks 👍
This describes exactly what I’ve gone through this whole month. They started around the end of august of this year. I have convulsions though, the buzzing in the face and jaw always freaks me out the most. I’m seeing a neurologist and they’re doing all the necessary tests to rule out epilepsy and spinal cord issues. Have an EEG tomorrow. Thanks for sharing your experiences
Hi, I have NEA and if I may add something : these seizures can also be a result of traumatic events. I have had these seizures for about a year now and they’re due to my traumatic past. So if anyone reading this has been diagnosed with NEA, it may also be related to a traumatic past/experience too. Anyways, thank you so much for taking the time to talk about it, it really means a lot ❤️
Connie Long Wow, I’m sorry that happened to you ❤️ Just know that I’m here for you if you wanna talk and that I believe you. You didn’t deserve what happened to you, no one does. Sending you lots of love and hugs your way 🥰
Connie Long If I could, I would hug you right now ❤️❤️ Please, know that you’re not alone, you can talk to me. I won’t judge you, I know how trauma can mess us up.
I got diagnosed with Non Epileptic Attack Disorder in 2023. It took me a few years until I got diagnosed. Before being diagnosed I was having loads of seizures which were caused by a traumatic experience which happened 12 years ago and was having the seizures for the past 12 years and I'm happy that I've been diagnosed now
I think i might have not sure though its only pop up during panic attacks or anxiety or anything stressful or really painful i had 2 today from mouth pain
No there isn’t. They recommend CBT (cognitive behavioral therapy). It’s to get to the root of the issue that’s causing it. I had then too. It was from past trauma. Anti anxiety meds helped me some.
I've had the same pins and needles/ ants crawling on head feeling on and off for almost 10 years now. Mostly when stressed. This is the first time I'm hearing someone else talk about it. I feel less abnormal lol. I had my first PNES attack 2 weeks back. Definately anxiety related because I was going through a stressful time. I had a spinal corrections surgery (scoliosis) 13 years back though. I'm wondering if its related. Its a relief to know Im not alone. I just pray it doesnt happen again or frequently. I'll have to find ways to manage my anxiety problems then.
My mother also diagnosed with non epileptic seizure. My mother is complaining left side of her brain always heavy and also she felt less strength on her left hand and leg. Is this happening to you also?
Thank you for this great video, i'm also diagnosed with NEA. May I ask about your pregnancy, did the "seizures" get any worse, how did the NEA affect you in your pregnancy?
I went to the hospital with this and they acted like I was a joke or faking, they didn't do any tests, just gave me some ibuprofen. I have a history of severe migraines and I was twitching and convulsing out of control. I feel like something is really wrong with me because I've recently had a huge change in the way I have headaches. I'm going to try and get an MRI.
Andrea Lenardo I have the same thing. I have uncontrollable body movements happens if I don’t get enough sleep. Or somethings I won’t be doing anything and my arms will jump up. I’ll get a ringing In my ear. It’s gotten worse and I thought it was anxiety. Got Zoloft and now it’s worse. I don’t know what to do. I got an mri done years back. It was normal.
i have non epileptic attacks for almost 5 years now. at first it was just that staring to space then u hear some words and after that i experience seizure where i become stiff. i was a dancer, practicing all day + some nights might have been the cause of my NEAD. i am taking meds for my seizures.
Mine started 3 years ago after 6 months of relentless stress. They come and go in different forms, I believe mine started from lack of sleep that lasted days, at the worst I felt like I had an explosion of Tourette’s when I just wanted to scream in anger then immediately after burst into tears
Has anyone else here noticed a close relationship between PNES and muscle tension? I definitely have and if you have then obviously it's important that you address that problem.
Hi, with these seizures they can be mistaken for epilepsy but there is no medication as it won’t be effective because it’s not caused by the brain cells it’s just caused by past events, anything traumatic that happens causes the seizures they can reduce over time :)
I had these attacks when I got pregnant with my son na they didn't know what it was. Now being pregnant again they have come back and I found a name for what it is. They only happen to me when asleep and when pregnant. But the last few days I've had the same symptoms you are describing when awake aswell.
I've been through them, and I'm so sorry you have to go through it. I always feel like I was bench pressing a bodybuilder after them is it like thatb for you too?
@@mediwise2474 I would assume physical stress would play a role here as blood pressure being too high or even too low could cause physical stress on the body. Although the doctors like to pretend its only caused by psychological stress
i have nead and have had an EEG and mri, everything was normal. My right arm normally twitches before i have one, i normally get them while i'm sleeping and i tend to bite down on my tongue so i get terrible mouth sores. I was diagnosed nearly 2 years ago, the doctor kept telling me it was down to stress, i have not had one all year until yesterday and another one during the night, what can i do? Also does epilepsy medication help or not?
Have you gotten any relief? We need to get this figured out. Everything normal for 18 years except could have seizures day and night. He does not seem stressed and says he is not, but why is he still having these strange seizures. CBD Hemp oil helped alot.
I got professional medical advice for 40 years that told me I have epilepsy. Then, in my mid 50's, I saw a neurologist who said "Naaah, I'm 90% sure you've got PNES". The misdiagnosis cost me my life, my career, my licence, my friends, etc etc etc - and there's nowhere to go for a refund. ☹
Darren, were your seizures always normal on the EEG and were they different than a typical seizure? We are in that situation, my son's are very traumatic, loud, he yells different things, has walked said the most outlandish things. Most Neurologists think they are seizures but three over the years have said differently. We are trying to get them under control now. Most meds do not work or make them worse. A few have worked over the last twenty two years. Did you have a traumatic event when you were young? Are you seizure free now? This field has changed very little over the last twenty years, very sad.
@@tamifromvirginia4046 Hi Tami, the seizures are very infrequent - once a year or so - and so they have never been captured on eeg or even witnessed by a neurologist. But when they do occur they are full blown grand mal seizures. They are violent, traumatic and can and often do cause serious injuries. Despite the incredible suffering I'm not considered by anyone - including neurologists - to have a serious illness. I've been concussed at least 20 times in my life which is of course very serious but because I'm not having seizures every day or so I don't fit the mould of having a serious problem. I lived in an abusive family home as a child and that I believe is the main reason I got into this mess. I am 100% convinced that they are intimately tied to stress, fear and anxiety. I have a good understanding of how those 3 things tie together and most of my efforts in recent years has involved applying that knowledge to get my life under control. I'm in better shape now than I have been for a long time and I don't live in fear of having another seizure - which is good because fear is a seizure trigger (because fear causes stress which is a known seizure trigger). I have learned through my own research that my seizures are closely related to gut issues so I take gut health very seriously. In my opinion the main culprit is the stress hormone cortisol. I can't be 100% sure that I'm seizure free because I can't use the seizure frequency as a guide because they are so infrequent, but I know that I'm less stressed, fearful and anxious than I used to be so that's definitely a positive sign. Best wishes.
For anyone who might be interested in my personal journey (ie probably no one) my experience with this illness had a positive outcome. After I discovered that the health industry couldn't provide an effective treatment I began a personal search for an effective treatment, which primarily involved looking for a cause by analysing and reflecting upon the seizures. My thoughts were driven inward, to try to figure out how my mind works. Paradoxically this made the condition worse (and I knew it) because it created a nasty vicious cycle where thinking about the problem causes the problem. What I learned from that is that the problem was at least partly caused by my mind being too "busy". So then I began a search for the reason(s) for that which branched out to lots of different areas including spirituality, human psychology and our social environment. I could write a very large book about this because I learned so much from my personal search, and ended up discovering important connections between all of those things and more. One of the things I learned is that modern ("civilised") society is unnatural and puts intense pressure on people to live up to an "acceptable" image, which pushes most people beyond breaking point. Their inability to cope with that problem manifests in a variety of health problems - including psychogenic seizures. Obviously an effective treatment is to remove the cause which means accepting people as they are, which in turn means loving them instead of judging them and forcing them to be somebody who they are not. Trying to be somebody else is stressful and challenging for the human mind. For some people it's too hard and they suffer for the rest of their lives unless they can get help, either medical, psychological or spiritual to reverse the damage.
I have Epilepsy but I had my Seizure surgically removed when I was 8. It’s common for Seizures to be Tumors. Interesting enough a Brain Tumor can be misdiagnosed as stress or Alzheimer’s Disease. When it comes to panic attacks I only had one and that was scary. I was so cold that four heavy blankets wasn’t enough to keep me warm. Weirdly enough laying on a couch got rid of my panic attack.
There is therapy for it I was just diagnosed with it and I have epilepsy also for the epilepsy I take medication. For the non seizures my doctor says there is an intense therapy that helps you manage it's the therapy works pretty good but if needed there is a different medication that's not seizures medication but they prefer to give therapy intensive teaches you how to deal with stress with sometimes I do not know you have.
i was diagnoised with NEA's yesterday after having what they thought was epilepsy since 2003. I have cerebral palsy, depression and anxiety. i've been on a couple different anti-seizure meds. Now i'm on a med that is used for psych issues and seizures. it works well (most of the time) But, recently i've been having more NEA's because i've been sick. The EEGs have all come back normal.
@@doemydear9651 thanks for your reply. I ended up going on antidepressants and its stopped them happening as often but still having them. Got CT scan tomorrow too. Have you been on them long? X
my doctor has been very adamant that i don't use the term 'seizure' to describe my non epileptic seizure like episodes, so I'm not sure what to call them?
your doctor is wrong. The medical profession just don't know enough about these. They are absolutely seizures, they're just not caused by an electrical storm in the brain.
You can call them shakes. They aren't actually seizures as seizures is due to frontal lobe firing. These shakes or fits are due to deep rooted psychological issues
@@drhammad1 I was referred to Prof Marcus Reuber at Sheffield Hallamshire 8 years ago. A junior neurologist witnessed one of my "episodes". MRI and cat scans were inconclusive. I was referred to the psych dept. Stress undoubtedly was the cause in my particular case.
I'd grand mal but remained conscious. My teeth were shattered in the attack. I passed out qfter about 10 seconds. Because I remained concious I believe it was ti's.I've Horrible migraines. I was put on topamax the headaches stopped. When I read this I hated myself.I punched myself in the eyes when I found out woke up blind this morning again!. The stress caused my condition to return. People tell me to speak English.i slap myself.
Thanks for uploading this. I have epilepsy both petit mal and grand mal - i remain conscious throughout the tonic-clonic seizures so feel my body going rigid, the mouth pull to one side, my eyes roll back, my arms extend, my legs flap like mad, jerky breathing, foaming at the mouth then hear the sort of snoring sound nearing the end of the seizure. At the end of these big seizures I'm super-emotional and headachy. When I had a psychosis (?) form of anxiety and depression so a major breakdown in 2016, i had shaking all over very much like an epileptic tonic-clonic seizure except that i could still walk and talk albeit very shakily. Just exhausting
Yes I had 2 in a row slept for 2 days my kidneys stopped producing urine because the person did nothing. Left me. I had to go by ambulance and the doctors were worried about rental failure
Anyone with PNES needs this book: Treating Nonepileptic Seizures by W.Curt Lafrance, Jr. There are 2 books making a set: a workbook & a therapist guide. I have had "episodes" for 7 yr AFTER it took over 2yrs to realize i don't have epilepsy. SEVERE PTSD is the cause. I've gone from 5 episodes a day to 1 a month. YOU CAN DO IT TOO! Work on it. YOU DID NOTHING TO CAUSE THIS, IT WAS ALL DONE TO YOU!!! You are sooo smart that youf brain short circuited rather than suicide! You are amazing. I BELIEVE IN YOU! PLEASE BELIEVE IN YOURSELF. I ask GOD to come into you & direct you to healing.AMEN
Anyone tried CBD Hemp oil, I am not talking about medical Marijuana. It worked for my family member for a number of years and it made life bearable. I bought it online, there are brands and levels of strength to choose from. He took it twice a say just like medicine. I would recommend for everyone, it tastes bad but that is the only drawback.
@@Zbest1123 we took Quicksilver Scientific Hemp Extract and Blueb ird Botanicals Complete. We linceeaswd the BB a few times. Many good brands like Charlotte's Web, Haleigh's Hope and Palnetto Harmony. Many children use those brands and they have customer service people to help. We met with Dr Meyers and we were told we need to get an official diagnosis if PNES from an Epileptoligist.
I hate them. My life has changed so much after a car accident. Changed my life so bad I wish I had gone to the other side. My kids have become estranged from me. The grandkids are afraid of me so I can't be around them. Yes I get that knumb thing. I try to ignore it. I was told I am not productive in society I am a burden by my family and others it just hurts really bad. I am not included in almost anything. Why? I am still a person. Such a heartbreaking life to know everyone is camping and I am left behind.
I’m so sorry about this. I work with a young woman, she’s actually my age, and she has these. I never understood and I didn’t realize how deep it affected this community. I hope your heart heals. Sending you lots of love❤️
I keep....a way from way people...if I tell anyone..the teat like I have disease....don't want anythng do with me......hard to date.....people how as serious...it hurt a lot.....if they only knew what it's like.....
That’s not true non epileptic seizures aren’t always due to psychological issues . They most certainly can have other causes. Mine are from my terminal illness . I take cbd oil suppositories and neurontin . The combination of meds works great for me .I was advised by my doctor that diagnosed me to start doing slow breathing exercises the moment you feel one coming one coming on . Try to Remain doing the slow breathing exercises until the seizure subsides .
It took 2 years for me to get diagnosed. I've always felt unsure about my diagnosis until you described yours. You said almost the same things as me. During my psychological treatment I got assessed for Autism and they found that I was Autistic which contributes a lot to the stress and seizures. Only took 30 years.
I have conversion disorder which is the pseudoseizures and it’s where my emotions become too much for my brain to handle and I have the psychical symptoms of A seizure but inside my body I was find psychically fine but mentally not. I had very severe anxiety and ptsd I’m not asking for support or petty I just want everyone to know this is A real diagnosis these people are NOT faking these things I have been officially diagnosed for two years I’m only 14 my seizures and anxiety takes are completely different.
I have them too!!!! I hope you’re doing better 😥💜
@@Markzuckisacuck I now have depression and ptsd and now suicidal but I’m fine. Been inpatient four times this year three times in the past month
I had these too when I was 13.
I’m postpartum from twins now and am experiencing them again. Do they affect your brain? Is this going to make me stupid?
@@brookelynelanee9179It is actually stupid what you’re saying. I think your pregnancy hormones fuck you up. It’s an insult the fact you say having those seizures is going to make you stupid, it’s not. Neither Epileptic or Non Epileptic Seizures make people dumb or stupid. You are going to be fine, take care of yourself and don’t carry that baby if you’re feeling a seizure is coming, as a matter of a fact try to be away from things than can harm you if you fall.
My panic attack feels like a seizure ,I get numb all over ,feel whole body stiff and chocking ,it's HORRIFIC,can't walk ,can't hold a glass of water ,it lasts for 30 minutes and than goes away
Thanks for uploading this. I have epilepsy both petit mal and grand mal - i remain conscious throughout the tonic-clonic seizures so feel my body going rigid, the mouth pull to one side, my eyes roll back, my arms extend, my legs flap like mad, jerky breathing, foaming at the mouth then hear the sort of snoring sound nearing the end of the seizure. At the end of these big seizures I'm super-emotional and headachy. When I had a psychosis (?) form of anxiety and depression so a major breakdown in 2016, i had shaking all over very much like an epileptic tonic-clonic seizure except that i could still walk and talk albeit very shakily. Just exhausting
Currently going through this. Doctors think I’m crazy, I’ve had CT scan, CT scan with dye, EKG TONS of blood work and every single time they tell me it’s stress related. Getting properly diagnosed is such a battle 😢
The same is happening to me and its frustrating.
I was diagnosed with stress related NEAD or dissociation seizures 8 years ago. There were no forewarnings. The only physical, observable characteristics witnessed by others were a vacant, blank expression and not responding to external visual or audible stimuli. "Lights on, but no-one at home" Curiously my right arm would be raised to a half height position. Like going into a room and forgetting what you went in for. MRI and Cat scans were inconclusive. Stress was thought to be the cause and I was referred to the psychologist by a world leading neurologist in NEAD, Prof. Marcus Reuber at the Sheffield Hallamshire hospital. Psychologist was a big help. Seizure free now for 6 + years.
Glad you are in a better place.
Which medicines you took
@@mediwise2474 Fluoxetine (antidepressant) and Lamotrigine. I was assured that the initial prescribed dosage was reasonably low. Also advised to consult psychologist if I was to be weened off them. I ventured to ask that the dosage was reduced after around 4 months.
@@loafersheffield can we talk on watsap or facebook
@@mediwise2474 I presume that you are contacting me to further your understanding of this condition. It will allow you to get a better understanding of this particular condition and as such benefit others. Regrettably, I value my anonymity and as such I am not willing to be contacted. I sincerely hope that you have every continued success in benefitting people with this malaise.
I’m so glad that they don’t really happen anymore. It was really scary when they happened. Now they have stopped it means it hasn’t affected your normal life which is amazing ❤️❤️
Me toon
Pillar Family I have dissociative identity disorder I get what's called dissociative seizures also known as pseudoseizures these happen when I dissociate into a certain alter I have no control over these because when I dissociate I lose control over my psychological and physical state it's a psychological reaction causing a physical reaction I have no memory of the moment I black out and I experience anemisa I only know from what people tell me I turn blue because I experience chronic breath holding in that state and turn blue and sometimes pass out I just try my best not to dissociate
How you can get rid of this? Plz help as my sis is suffering.. thanks
Did anyone experience delirium after there non epileptical sezuires??? Plz tell me my sister is experiencing delerium like symtoms after having non elliptical sezuires
This really made sense to me,very well described and closest i can kind of describe what ive had. The first time you talk about one coming on is exactly how i felt a month ago and was the first time id had a seizure and felt it coming on,though every time ive had them they are more intense and cause me to blackout and from what ive heard from people around me,tense up all over and once try to climb out a moving car. Not been diagnosed with anything and have also been for the same scan and was told i was fine so this really connects with me and gives me something to look into. Thanks 👍
Thank you! This is the best explanation I have found on TH-cam including those given by health professionals.
This describes exactly what I’ve gone through this whole month. They started around the end of august of this year. I have convulsions though, the buzzing in the face and jaw always freaks me out the most. I’m seeing a neurologist and they’re doing all the necessary tests to rule out epilepsy and spinal cord issues. Have an EEG tomorrow. Thanks for sharing your experiences
Any updates you could share? I am dealing with them this year.
Hi,
I have NEA and if I may add something : these seizures can also be a result of traumatic events. I have had these seizures for about a year now and they’re due to my traumatic past. So if anyone reading this has been diagnosed with NEA, it may also be related to a traumatic past/experience too. Anyways, thank you so much for taking the time to talk about it, it really means a lot ❤️
Bless u x i was abused as a child
Connie Long Wow, I’m sorry that happened to you ❤️ Just know that I’m here for you if you wanna talk and that I believe you. You didn’t deserve what happened to you, no one does. Sending you lots of love and hugs your way 🥰
@@camillelemarchand ty x been crying
Connie Long If I could, I would hug you right now ❤️❤️ Please, know that you’re not alone, you can talk to me. I won’t judge you, I know how trauma can mess us up.
@@camillelemarchand ty xxx
I got diagnosed with Non Epileptic Attack Disorder in 2023. It took me a few years until I got diagnosed. Before being diagnosed I was having loads of seizures which were caused by a traumatic experience which happened 12 years ago and was having the seizures for the past 12 years and I'm happy that I've been diagnosed now
I think i might have not sure though its only pop up during panic attacks or anxiety or anything stressful or really painful i had 2 today from mouth pain
Great video iv got this had it most my life please do some updates as iv been told there is no medication for it
Will do :)
No there isn’t. They recommend CBT (cognitive behavioral therapy). It’s to get to the root of the issue that’s causing it. I had then too. It was from past trauma. Anti anxiety meds helped me some.
@@JillianNoelle are you better now ,I think mine are also from different traumas or does it have to be one trauma only???
Doesn't diazepam help?
I've had the same pins and needles/ ants crawling on head feeling on and off for almost 10 years now. Mostly when stressed. This is the first time I'm hearing someone else talk about it. I feel less abnormal lol. I had my first PNES attack 2 weeks back. Definately anxiety related because I was going through a stressful time. I had a spinal corrections surgery (scoliosis) 13 years back though. I'm wondering if its related.
Its a relief to know Im not alone. I just pray it doesnt happen again or frequently. I'll have to find ways to manage my anxiety problems then.
My mother also diagnosed with non epileptic seizure.
My mother is complaining left side of her brain always heavy and also she felt less strength on her left hand and leg.
Is this happening to you also?
I have PNES and Epilepsy. I was just diagnosed in Feb 2022. I am trying to get my head around all this. I am seeing so many specialists for the.
How to get an EEG in my brain the going to test me epilepsy I have seizures😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊
I have any appointment on Thursday morning😊😊lachelle
NEAD sucks! My worst day was when I had 15 attacks in 1 day😬
Thank goodness I only have them in crowded places!😂 if I stay at home I'm good!
This is amazing my partner is going through a similar thing I’m glad you are doing well
Yes the hospital not the one that said it Nonepilectic seizures but a different one found that I had high blood pressure.
Thank you for this great video, i'm also diagnosed with NEA.
May I ask about your pregnancy, did the "seizures" get any worse, how did the NEA affect you in your pregnancy?
I went to the hospital with this and they acted like I was a joke or faking, they didn't do any tests, just gave me some ibuprofen. I have a history of severe migraines and I was twitching and convulsing out of control. I feel like something is really wrong with me because I've recently had a huge change in the way I have headaches. I'm going to try and get an MRI.
Andrea Lenardo I have the same thing. I have uncontrollable body movements happens if I don’t get enough sleep. Or somethings I won’t be doing anything and my arms will jump up. I’ll get a ringing In my ear. It’s gotten worse and I thought it was anxiety. Got Zoloft and now it’s worse. I don’t know what to do. I got an mri done years back. It was normal.
Same
Any updates?
i have non epileptic attacks for almost 5 years now. at first it was just that staring to space then u hear some words and after that i experience seizure where i become stiff. i was a dancer, practicing all day + some nights might have been the cause of my NEAD. i am taking meds for my seizures.
Mine started 3 years ago after 6 months of relentless stress.
They come and go in different forms, I believe mine started from lack of sleep that lasted days, at the worst I felt like I had an explosion of Tourette’s when I just wanted to scream in anger then immediately after burst into tears
I just had one 3 days ago its really scary.
My worst day I had 94 (convulsive types). I’m 16.
Has anyone else here noticed a close relationship between PNES and muscle tension? I definitely have and if you have then obviously it's important that you address that problem.
They’re just gunna say “yeah the mind does some weirrrrrrd things, hahahaha but good news there’s therapy”
If I pretend when I have a panic attack and or seizure...it worse. I accepted that I'm having one and breathe it will go away.
I've never had seizures. But today but today I had 2 attacks this afternoon scared the hell out me
I had one yesterday for the first time and it was terrifying..
did u take any medication for attack after your diagnosis can u tell specifically how ur attack reduced over time
Hi, with these seizures they can be mistaken for epilepsy but there is no medication as it won’t be effective because it’s not caused by the brain cells it’s just caused by past events, anything traumatic that happens causes the seizures they can reduce over time :)
I had these attacks when I got pregnant with my son na they didn't know what it was. Now being pregnant again they have come back and I found a name for what it is. They only happen to me when asleep and when pregnant. But the last few days I've had the same symptoms you are describing when awake aswell.
I've been through them, and I'm so sorry you have to go through it. I always feel like I was bench pressing a bodybuilder after them is it like thatb
for you too?
My 16yo explains hers like this too. She's extremely sore and exhausted afterwards.
I was diagnosed with non epileptic seizures/ attacks I got but on a med that lowers my blood pressure and now the seizures have mostly stopped.
What is relation with blood pressure
@@mediwise2474 I would assume physical stress would play a role here as blood pressure being too high or even too low could cause physical stress on the body. Although the doctors like to pretend its only caused by psychological stress
i have nead and have had an EEG and mri, everything was normal. My right arm normally twitches before i have one, i normally get them while i'm sleeping and i tend to bite down on my tongue so i get terrible mouth sores. I was diagnosed nearly 2 years ago, the doctor kept telling me it was down to stress, i have not had one all year until yesterday and another one during the night, what can i do? Also does epilepsy medication help or not?
Have you gotten any relief? We need to get this figured out. Everything normal for 18 years except could have seizures day and night. He does not seem stressed and says he is not, but why is he still having these strange seizures.
CBD Hemp oil helped alot.
Do you take meds???
I got professional medical advice for 40 years that told me I have epilepsy. Then, in my mid 50's, I saw a neurologist who said "Naaah, I'm 90% sure you've got PNES". The misdiagnosis cost me my life, my career, my licence, my friends, etc etc etc - and there's nowhere to go for a refund. ☹
Yep, lonely life and your treated like your a child. Very sad
Darren, were your seizures always normal on the EEG and were they different than a typical seizure? We are in that situation, my son's are very traumatic, loud, he yells different things, has walked said the most outlandish things. Most Neurologists think they are seizures but three over the years have said differently. We are trying to get them under control now. Most meds do not work or make them worse. A few have worked over the last twenty two years.
Did you have a traumatic event when you were young? Are you seizure free now?
This field has changed very little over the last twenty years, very sad.
@@tamifromvirginia4046 Hi Tami, the seizures are very infrequent - once a year or so - and so they have never been captured on eeg or even witnessed by a neurologist. But when they do occur they are full blown grand mal seizures. They are violent, traumatic and can and often do cause serious injuries. Despite the incredible suffering I'm not considered by anyone - including neurologists - to have a serious illness. I've been concussed at least 20 times in my life which is of course very serious but because I'm not having seizures every day or so I don't fit the mould of having a serious problem. I lived in an abusive family home as a child and that I believe is the main reason I got into this mess. I am 100% convinced that they are intimately tied to stress, fear and anxiety. I have a good understanding of how those 3 things tie together and most of my efforts in recent years has involved applying that knowledge to get my life under control. I'm in better shape now than I have been for a long time and I don't live in fear of having another seizure - which is good because fear is a seizure trigger (because fear causes stress which is a known seizure trigger). I have learned through my own research that my seizures are closely related to gut issues so I take gut health very seriously. In my opinion the main culprit is the stress hormone cortisol. I can't be 100% sure that I'm seizure free because I can't use the seizure frequency as a guide because they are so infrequent, but I know that I'm less stressed, fearful and anxious than I used to be so that's definitely a positive sign. Best wishes.
@@tamifromvirginia4046 th-cam.com/video/wpY1_RxjZQ8/w-d-xo.html
For anyone who might be interested in my personal journey (ie probably no one) my experience with this illness had a positive outcome. After I discovered that the health industry couldn't provide an effective treatment I began a personal search for an effective treatment, which primarily involved looking for a cause by analysing and reflecting upon the seizures. My thoughts were driven inward, to try to figure out how my mind works. Paradoxically this made the condition worse (and I knew it) because it created a nasty vicious cycle where thinking about the problem causes the problem. What I learned from that is that the problem was at least partly caused by my mind being too "busy". So then I began a search for the reason(s) for that which branched out to lots of different areas including spirituality, human psychology and our social environment. I could write a very large book about this because I learned so much from my personal search, and ended up discovering important connections between all of those things and more. One of the things I learned is that modern ("civilised") society is unnatural and puts intense pressure on people to live up to an "acceptable" image, which pushes most people beyond breaking point. Their inability to cope with that problem manifests in a variety of health problems - including psychogenic seizures. Obviously an effective treatment is to remove the cause which means accepting people as they are, which in turn means loving them instead of judging them and forcing them to be somebody who they are not. Trying to be somebody else is stressful and challenging for the human mind. For some people it's too hard and they suffer for the rest of their lives unless they can get help, either medical, psychological or spiritual to reverse the damage.
I have Epilepsy but I had my Seizure surgically removed when I was 8.
It’s common for Seizures to be Tumors.
Interesting enough a Brain Tumor can be misdiagnosed as stress or Alzheimer’s Disease.
When it comes to panic attacks I only had one and that was scary.
I was so cold that four heavy blankets wasn’t enough to keep me warm.
Weirdly enough laying on a couch got rid of my panic attack.
There is therapy for it I was just diagnosed with it and I have epilepsy also for the epilepsy I take medication. For the non seizures my doctor says there is an intense therapy that helps you manage it's the therapy works pretty good but if needed there is a different medication that's not seizures medication but they prefer to give therapy intensive teaches you how to deal with stress with sometimes I do not know you have.
i was diagnoised with NEA's yesterday after having what they thought was epilepsy since 2003. I have cerebral palsy, depression and anxiety. i've been on a couple different anti-seizure meds. Now i'm on a med that is used for psych issues and seizures. it works well (most of the time) But, recently i've been having more NEA's because i've been sick. The EEGs have all come back normal.
Did you have to take antidepressants ? My gp wants me to try them. Having the same sort of experiences as you did at the moment x
I am on venlaflaxine really no help I don't think just gets you fatter
@@doemydear9651 thanks for your reply. I ended up going on antidepressants and its stopped them happening as often but still having them. Got CT scan tomorrow too. Have you been on them long? X
I have the exact same symptoms as you do
my doctor has been very adamant that i don't use the term 'seizure' to describe my non epileptic seizure like episodes, so I'm not sure what to call them?
You could call them attacks or dissociative attacks?
your doctor is wrong. The medical profession just don't know enough about these. They are absolutely seizures, they're just not caused by an electrical storm in the brain.
You can call them shakes. They aren't actually seizures as seizures is due to frontal lobe firing. These shakes or fits are due to deep rooted psychological issues
@@drhammad1 I was referred to Prof Marcus Reuber at Sheffield Hallamshire 8 years ago. A junior neurologist witnessed one of my "episodes". MRI and cat scans were inconclusive. I was referred to the psych dept. Stress undoubtedly was the cause in my particular case.
@@loafersheffield Thank you. This is useful info for other people who have similar experience
Thank you, Thank you...now I know what I've experienced.
Jesus Bless praying for you guys much love you will be healed
I'd grand mal but remained conscious. My teeth were shattered in the attack. I passed out qfter about 10 seconds. Because I remained concious I believe it was ti's.I've Horrible migraines. I was put on topamax the headaches stopped. When I read this I hated myself.I punched myself in the eyes when I found out woke up blind this morning again!. The stress caused my condition to return. People tell me to speak English.i slap myself.
Thanks for uploading this. I have epilepsy both petit mal and grand mal - i remain conscious throughout the tonic-clonic seizures so feel my body going rigid, the mouth pull to one side, my eyes roll back, my arms extend, my legs flap like mad, jerky breathing, foaming at the mouth then hear the sort of snoring sound nearing the end of the seizure. At the end of these big seizures I'm super-emotional and headachy. When I had a psychosis (?) form of anxiety and depression so a major breakdown in 2016, i had shaking all over very much like an epileptic tonic-clonic seizure except that i could still walk and talk albeit very shakily. Just exhausting
Do you get migraines often?
I do and my body aches sometimes
Do you feel super tired immediately after having an episode?
Pretty sure you can. I felt very weird and groggy. My body felt fuzzy and I was quiet for a solid hour. No idea what I just experienced
Yes I had 2 in a row slept for 2 days my kidneys stopped producing urine because the person did nothing. Left me. I had to go by ambulance and the doctors were worried about rental failure
really exhausted
YES , extremely
These seizures are due to psychological issues and not an actual pathology. I hope you get appropriate psychological care
Thank you captain obvious
Are you a neuropsychologist? I'll wait.
Anyone with PNES needs this book: Treating Nonepileptic Seizures by W.Curt Lafrance, Jr. There are 2 books making a set: a workbook & a therapist guide. I have had "episodes" for 7 yr AFTER it took over 2yrs to realize i don't have epilepsy. SEVERE PTSD is the cause. I've gone from 5 episodes a day to 1 a month. YOU CAN DO IT TOO! Work on it. YOU DID NOTHING TO CAUSE THIS, IT WAS ALL DONE TO YOU!!! You are sooo smart that youf brain short circuited rather than suicide!
You are amazing. I BELIEVE IN YOU! PLEASE BELIEVE IN YOURSELF. I ask GOD to come into you & direct you to healing.AMEN
Do u feel like u dont know where u are? I get that
Pl talk
i have NON EPILEPTIC ATTACKS AND SEIZERS ALL THE TIME.
Anyone tried CBD Hemp oil, I am not talking about medical Marijuana. It worked for my family member for a number of years and it made life bearable. I bought it online, there are brands and levels of strength to choose from. He took it twice a say just like medicine.
I would recommend for everyone, it tastes bad but that is the only drawback.
Are you able to share the brand and the strength as I need it for a family member who is suffering due FND.
@@Zbest1123 we took Quicksilver Scientific Hemp Extract and Blueb ird Botanicals Complete. We linceeaswd the BB a few times. Many good brands like Charlotte's Web, Haleigh's Hope and Palnetto Harmony. Many children use those brands and they have customer service people to help.
We met with Dr Meyers and we were told we need to get an official diagnosis if PNES from an Epileptoligist.
I have and it's worked wonders for me I went from having more than 5 a day to maybe 1 or once a month
@@Zbest1123 the one I use the brand is Cali cbd and its 1000mg 5 drops 2 times a day:>
I hate them. My life has changed so much after a car accident. Changed my life so bad I wish I had gone to the other side. My kids have become estranged from me. The grandkids are afraid of me so I can't be around them. Yes I get that knumb thing. I try to ignore it. I was told I am not productive in society I am a burden by my family and others it just hurts really bad. I am not included in almost anything. Why? I am still a person. Such a heartbreaking life to know everyone is camping and I am left behind.
I’m so sorry about this. I work with a young woman, she’s actually my age, and she has these. I never understood and I didn’t realize how deep it affected this community. I hope your heart heals. Sending you lots of love❤️
I keep....a way from way people...if I tell anyone..the teat like I have disease....don't want anythng do with me......hard to date.....people how as serious...it hurt a lot.....if they only knew what it's like.....
That’s not true non epileptic seizures aren’t always due to psychological issues . They most certainly can have other causes. Mine are from my terminal illness . I take cbd oil suppositories and neurontin . The combination of meds works great for me .I was advised by my doctor that diagnosed me to start doing slow breathing exercises the moment you feel one coming one coming on . Try to Remain doing the slow breathing exercises until the seizure subsides .
Yeah seizures can be caused by drug withdrawals too but i doubt in this girls case.
Do you remember your seizure?
❤️