Hey, ive been recently diagnosed in 2018 for the exact same thing. Not a lot of people understand this. I am so happy I have found more people going through the same thing. Been hoping to find a support group. I would love to talk to other people going through this.
I am having the worst time. I have been diagnosed with PNES and I am in the appeals process myself. I feel so depressed and awful. And no one seems to know anything. Thank you for making this video. It was so nice to hear someone actually talk about it. My name is Jessica and if you ever want to message, please do. I am stuck in middle of nowhere, cant drive and I honestly don't have any friends. Im 37 and lonely and confused and scared. So thank you for your comfort. It means more than you know.
We will fight this together. I'm preparing to launch my first videos on the subject. Thank you for sharing. There are answers. Please tune in. Bless you. Stay strong.
😓 I have them everyday at night time. Had everything done on me and nothing. No one can diagnose me. But I went to a chiropractor and it helped plus i have a decent med to help then they prescribed Xanax and it hate my life now 😢 I haven't had a attack in a long time. But I don't want to 😓 the seziures suck I have bad lock up In my toes and leg muscles
EMTs and ER docs mistreating you when you have one of these episodes is why PNES needs to be renamed to something like psychogenic paroxysms. They are not epileptic and they are not seizures so neither of those terms should be in the name. It will do everyone a service to have the name changed.
My 21 year old grandson has just been diagnosed with this. He has been on 2 epilepsy meds and only getting worse. My daughter does have epilepsy. But after so many trips by ambulance to ER.And a 3 day brain wave test it was not epilepsy but Pnes.it is a horrible thing to describe.
Its not great you have these too but its nice to know your not alone ..ive suffered with these years over 21 yrs n the stress it adds to you just worrying about having another .really doesn't help!!..ide had mini stroke too in beginning as scans said as bleed in brain too….recovered from all this c#@p but still worries you all the same especially the young….much love n debbi vasileiou…stay chilled.!!
Its has been a little over a year now since my tremors episodes started. And all the doc I have seen still don't know what is going on with me. Its frustrating at the same time discouraging to have your life altered and not know or understand why. Plus it don't help to feel like no one around understand or docs are giving up because they don't know or think your faking. But your video has helped a lot. I am experiencing a lot of the same things you are, thanks for the video.
I had a neurologist tell me for 2 years I was having PNES. I Finally sought a second opinion with an epilepsy clinic. They said like me a lot of epileptic seizures don't ever show up on EEG. That's not a basis to diagnose PNES. I recommend anyone diagnosed with PNES get a second opinion with an epilepsy clinic. Have someone film a seizure. My new neurologist put me on two seizure meds and I haven't had a grand mal seizure in a year. There is nothing to be ashamed of if you suffer from PNES. It is a medical condition. But if you actually have epilepsy and the seizures can possibly be controlled it is worth the second opinion.
I have days where my whole body jerks and there's nothing I can do to stop it! Im on alot of meds, eplium 800 twice a day, I have alot of disabilities and two of them are chronic pain conditions, FM and CRPS! So most of my life is spent in bed due to my conditions and im incontinent so I go through about 6 nappies a day! Xx
I was diagnosed with this illness sometime last year. I have been fighting for disability since 2014. After 3 incapable law firms, 4-5 appeals, 3-4 times denied, my case got closed then re-opened, incompetence from a few judges, and it hurts me when people in my family and other people i explain this too think because i have two arms and two legs that i can work and the ignorance pisses me off. You mentioned how you feel seizures coming on before they happen and that’s called auras (warnings). I get them each time and the recovery is like a vampire draining you. I also get absence seizures and clonic seizures. I choose not to renew my drivers license because i don’t want to take a loved one from someones family because of me committing a selfish act. I live in NYC so transportation is everywhere. Plus, it’s cheaper, faster and no ticket paranoia. Keep fighting and don’t give up on social security. If your parents are very supportive like mine are then girl you got this. Fight, survive and overcome to live. You go girl.
Thank you for sharing your experience. I was diagnosed with PNES a few months ago after many years of frequent episodes. I cannot work, and I would like to be on disability but people around me keep saying “oh surely there’s SOMETHING you can do.” 😔 I have CPTSD and experienced a TBI in my late teens…I’ve been told I need therapy but I’m struggling to find the resources for it. Lately I’ve been having a lot of episodes when waking up from bad dreams, but sometimes they’re just out of the blue when I’m feeling ok. I wish there were more obvious triggers….sometimes I get a crawling sensation on my scalp, but not always. Anyway, I’m a new subscriber and hope to hear more about your experience. Thanks again. 🦋
I have seizures, I went to a neurologist and she did an egg, it didn't pick up anything, but I didn't have a seizure during it. The neurologist basically told me that my seizures are from my anxiety and said she couldn't do anything for me and sent me home. I have complex PTSD and a lot of mental health issues. I go through a lot of stress at home with my mom. Stress brings them on. I need to get an egg where I stay, because I had the half hour one done before and didn't have a seizure during it. One of my online friends has PNES, so I think that's what I have. My counselor diagnosed me with them, but my parents don't think my counselor can diagnose me with something, even my PTSD. My seizures have Been getting worse overtime, I get them in stores and restaurants. I am going to be 18 this month and my dad is trying to pressure me into driving. I know I can't drive with my seizures, but my parents don't think they are seizures because they ruled out Epilepsy. In the future when I move out I really want to get a service dog, I have 7 different disabilities that qualify for a service dog, and having a service dog will make daily life easier for me. There is this online course that I want to take after I graduate in May, and the job I will have after that course will be remote.
Thank you for sharing. Is PNES also confused with Narcolepsy? My wife is having these issues too. The Neurologist is saying it is PNES but the Neuropsychologist thinks it could be Narcolepsy.
I recently developed this condition and it’s so unknown that it’s difficult for people to understand much less treat. I appreciate you sharing what it’s like for the world.
Did you ever get your disability? Just wanted to know. I was told in Feb of 2020. that I have it, and I'm trying to get disability now myself. And I couldn't find a video of yours saying if you ever did or not.
I use CBD Oil and Neurontin to help with my non epileptic seizures. It helps me tremendously.. I still have seizures once While but before I was having them daily three or more times a day.
Hi, this is an amazing heart warming video. Thanks for making and sharing this. A friend of mine is having seizures(PNES) from the past 8 days. How are you doing now? And, do you know of people who got completely cured of PNES?
My G/F got diagnosed with this today. I got a long road ahead of me trying to make sense of it all.
Has anyone been diagnosed with PNES as well as epilepsy? Looking for any and all possible help
Hey, ive been recently diagnosed in 2018 for the exact same thing. Not a lot of people understand this. I am so happy I have found more people going through the same thing. Been hoping to find a support group. I would love to talk to other people going through this.
I am having the worst time. I have been diagnosed with PNES and I am in the appeals process myself. I feel so depressed and awful. And no one seems to know anything. Thank you for making this video. It was so nice to hear someone actually talk about it. My name is Jessica and if you ever want to message, please do. I am stuck in middle of nowhere, cant drive and I honestly don't have any friends. Im 37 and lonely and confused and scared. So thank you for your comfort. It means more than you know.
We will fight this together. I'm preparing to launch my first videos on the subject. Thank you for sharing. There are answers. Please tune in. Bless you. Stay strong.
😓 I have them everyday at night time. Had everything done on me and nothing. No one can diagnose me. But I went to a chiropractor and it helped plus i have a decent med to help then they prescribed Xanax and it hate my life now 😢 I haven't had a attack in a long time. But I don't want to 😓 the seziures suck I have bad lock up In my toes and leg muscles
EMTs and ER docs mistreating you when you have one of these episodes is why PNES needs to be renamed to something like psychogenic paroxysms. They are not epileptic and they are not seizures so neither of those terms should be in the name. It will do everyone a service to have the name changed.
Thank you for sharing you’re story, I’m just beginning my journey and your experience through this is helping understand mine. Have a bless day.
I feel you.. I have PNES and PTSD..
I have this too and it is very hard! Thank you for sharing
My 21 year old grandson has just been diagnosed with this. He has been on 2 epilepsy meds and only getting worse. My daughter does have epilepsy. But after so many trips by ambulance to ER.And a 3 day brain wave test it was not epilepsy but Pnes.it is a horrible thing to describe.
My 15 yr old was diagnosed with PNES. This video really helped me.
Thank you for sharing
When you have it in your sleep what happens?
Also commonly known as Pseudo-Seizures, aka Fake Seizures.
Its not great you have these too but its nice to know your not alone ..ive suffered with these years over 21 yrs n the stress it adds to you just worrying about having another .really doesn't help!!..ide had mini stroke too in beginning as scans said as bleed in brain too….recovered from all this c#@p but still worries you all the same especially the young….much love n debbi vasileiou…stay chilled.!!
Thanksa lot for your thoughts. You are very strong woman. Take care.
Thank you so much for your bravery in sharing. Your story is so valuable to us.
Its has been a little over a year now since my tremors episodes started. And all the doc I have seen still don't know what is going on with me. Its frustrating at the same time discouraging to have your life altered and not know or understand why. Plus it don't help to feel like no one around understand or docs are giving up because they don't know or think your faking. But your video has helped a lot. I am experiencing a lot of the same things you are, thanks for the video.
I had a neurologist tell me for 2 years I was having PNES. I Finally sought a second opinion with an epilepsy clinic. They said like me a lot of epileptic seizures don't ever show up on EEG. That's not a basis to diagnose PNES. I recommend anyone diagnosed with PNES get a second opinion with an epilepsy clinic. Have someone film a seizure. My new neurologist put me on two seizure meds and I haven't had a grand mal seizure in a year. There is nothing to be ashamed of if you suffer from PNES. It is a medical condition. But if you actually have epilepsy and the seizures can possibly be controlled it is worth the second opinion.
I have days where my whole body jerks and there's nothing I can do to stop it! Im on alot of meds, eplium 800 twice a day, I have alot of disabilities and two of them are chronic pain conditions, FM and CRPS! So most of my life is spent in bed due to my conditions and im incontinent so I go through about 6 nappies a day! Xx
I was diagnosed with this illness sometime last year. I have been fighting for disability since 2014. After 3 incapable law firms, 4-5 appeals, 3-4 times denied, my case got closed then re-opened, incompetence from a few judges, and it hurts me when people in my family and other people i explain this too think because i have two arms and two legs that i can work and the ignorance pisses me off. You mentioned how you feel seizures coming on before they happen and that’s called auras (warnings). I get them each time and the recovery is like a vampire draining you. I also get absence seizures and clonic seizures. I choose not to renew my drivers license because i don’t want to take a loved one from someones family because of me committing a selfish act. I live in NYC so transportation is everywhere. Plus, it’s cheaper, faster and no ticket paranoia. Keep fighting and don’t give up on social security. If your parents are very supportive like mine are then girl you got this. Fight, survive and overcome to live. You go girl.
Thank you for sharing your experience. I was diagnosed with PNES a few months ago after many years of frequent episodes. I cannot work, and I would like to be on disability but people around me keep saying “oh surely there’s SOMETHING you can do.” 😔 I have CPTSD and experienced a TBI in my late teens…I’ve been told I need therapy but I’m struggling to find the resources for it. Lately I’ve been having a lot of episodes when waking up from bad dreams, but sometimes they’re just out of the blue when I’m feeling ok. I wish there were more obvious triggers….sometimes I get a crawling sensation on my scalp, but not always. Anyway, I’m a new subscriber and hope to hear more about your experience. Thanks again. 🦋
I have seizures, I went to a neurologist and she did an egg, it didn't pick up anything, but I didn't have a seizure during it. The neurologist basically told me that my seizures are from my anxiety and said she couldn't do anything for me and sent me home. I have complex PTSD and a lot of mental health issues. I go through a lot of stress at home with my mom. Stress brings them on. I need to get an egg where I stay, because I had the half hour one done before and didn't have a seizure during it. One of my online friends has PNES, so I think that's what I have. My counselor diagnosed me with them, but my parents don't think my counselor can diagnose me with something, even my PTSD. My seizures have Been getting worse overtime, I get them in stores and restaurants. I am going to be 18 this month and my dad is trying to pressure me into driving. I know I can't drive with my seizures, but my parents don't think they are seizures because they ruled out Epilepsy. In the future when I move out I really want to get a service dog, I have 7 different disabilities that qualify for a service dog, and having a service dog will make daily life easier for me. There is this online course that I want to take after I graduate in May, and the job I will have after that course will be remote.
Need help. Im literally going through this alone… nobody knows how it feels
Thank you for sharing. Is PNES also confused with Narcolepsy? My wife is having these issues too. The Neurologist is saying it is PNES but the Neuropsychologist thinks it could be Narcolepsy.
I recently developed this condition and it’s so unknown that it’s difficult for people to understand much less treat. I appreciate you sharing what it’s like for the world.
Did you ever get your disability? Just wanted to know. I was told in Feb of 2020. that I have it, and I'm trying to get disability now myself. And I couldn't find a video of yours saying if you ever did or not.
My triggers are : sleep deprivation, being sick Orr missing my seizure medication.
I use CBD Oil and Neurontin to help with my non epileptic seizures. It helps me tremendously.. I still have seizures once While but before I was having them daily three or more times a day.
Hi, this is an amazing heart warming video. Thanks for making and sharing this. A friend of mine is having seizures(PNES) from the past 8 days. How are you doing now? And, do you know of people who got completely cured of PNES?