Ive suffered these since about age 6. 1st time was at Dr watching my older sister having blood drawn. Most times now its due to medical procedures, dental work, accupuncture sometimes, vaccination and very occasionally from extreme emotional distress. Its a horrible horrible feeling, i often cant stop vomiting for an hour afterward, and I feel extremely weak and tired for at least 24 hrs. Certainly not something you could or would want to fake! Im glad to know what this condition is, and very interesting to find out some of the correlations/comorbidities. Great video, thanks!!
Dear Nicki, Thank you for sharing your experience. I hope it will help other viewers understand that this is a real condition that creates suffering and that we need to offer help and compassion wherever we can. Wishing you much courage, health, and healing. Love, Dr. May
All of my kids and my husband have what you describe and have been diagnosed with vasovagal episodes. My kids were investigated closely because I do have a daughter who had epilepsy as an infant. Have you ruled this out?
@@chocoholicaims DIfferential diagnosis can be challenging (see my second video), and it is important to have a thorough medical work-up. Sometimes similar symptoms can happen with vasovagal issues, but other times it is PNES or other conditions. A video EEG is the standard test for someone when it is unclear as to whether they have PNES or epilepsy.
PNES has a couple of working terms but i know of them as dissociative seizures and I like that term for me as apart from the seizures I also struggle with other symptoms of dissociation, like dissociative amnesia and DID. They usually pop up for a period of a couple months and then go away again. I had one for the first time in a little over a year today they always exacerbate my symptoms of dissociation and also recovered some repressed memories about my molestation
Very helpful! I will share this with my family so they can have a better understanding of what is going on with me. Thank you for doing the research and for sharing this presentation with providers. ❤
I’m so doubtful that PNES is actually a real thing. The description of what PNES is, fits the description of epileptic symptoms. EEG can be normal for 50 percent in an epileptic seizure, it depends on where in the brain the seizure occurs. And there are 60 different types of epileptic seizures. Focal seizures can be very bizarre and atypical. Epilepsy is very traumatic for the sufferers, of course these patients have trauma symptoms. And the brain of a traumatized person changes so it is not really believable that the medical professionals can diagnose PNES by the evidence of trauma brain. And stress is one of many common triggers for an epileptic seizure and depression is a side effect of epileptic seizures. Epilepsy has been misunderstood and stigmatized since history. And this possibility of a pseudo seizure diagnosis just perpetuates the problem. Now epileptic patients are not being taken seriously and they are being put in a situation where they have to prove that they are actually suffering from the disease. And then there’s the possibility of having both epileptic and non epileptic seizures? That’s so convenient for the medical community when they have a difficult case.
Why don’t you email one of the actual experts on PNES with your questions…. They could probably explain the science better than I could. There’s a lot of good free journal articles about the topic as well which might help.
I am a person with PNES they are definitely real and sometimes terefing cause you can hear everything that's going on while you can't control your body and you can't have high emotions or a seizure can be triggered and if your body goes through something new a seizure can happen
@@purplestew4000 so sorry that you have to suffer like that! That does sound terrifying. It also sounds like the symptoms of an epileptic simple partial seizure. I suspect that you were misdiagnosed with a psychological condition because focal seizures are bizarre, atypical, and complex. When you may very well be having epileptic seizures. But it’s easier on the medical professionals in neurology to send a difficult case to another practice under psychology… the psychologist is not knowledgeable about the complexities in epilepsy and will not be able to diagnose the patient with having true epileptic seizures. So your diagnosis of PNES is a one way street without the ability for a misdiagnosis to be redacted.
you are missing a key element . NEPS do not respond to seizure meds like kepra and the seizures are different even if some of the triggers are similar. Just because you don’t understand something doesn’t make it any less real
Used to send them out for physical eval. They tend not to hurt themselves. It was a psychiatric unit. We could see secondary gaines for malingring. But pnes needed to be explained by physicians. Interesting presentation.
Thanks for watching! Yes, as I'll discuss in one of the upcoming PNES videos, it is usually not necessary (and often potentially harmful) to send people to the ER after a PNES event. If the episode can be managed at home or on a psych unit without physical injury, it is best to stay put. It is also common for hospital staff to blame the person, assume malingering, and insist the person is faking or "trying to get attention." (Which is why I prepared this presentation to begin with!) And while there can be factors in the environment that can be "reinforcing," it also does not mean that the person was doing it volitionally or "just trying to get attention." (Same idea with behavioral addictions such as self-injury or foreign body ingestion). I would recommend the book "In Our Own Words: Stories of those living with, learning from and overcoming the challenges of psychogenic non-epileptic seizures (PNES)" as a way to get an inside view of what it is like to have this disorder. It is a great way to build understanding. www.amazon.com/Our-Own-Words-psychogenic-non-epileptic/dp/1516836480
Thank you for making this video on PNES. It was very helpful on a professional and personal level. May I share this on my business page? I feel that this may help a lot of people to understand PNES and be more aware of it.
I’ve been having these for nearly 5 years and no one will help me because I’m not suffering from anxiety and depression, I’ve been called a lier by 2 drs and now I’m just passed around like a toy, I only seem to have them when laid down, the last few months I’ve been having them non stopped through the night that’s lasting 5-6 hours I’m absolutely exhausted and fatigued, I also have 2 heat conditions which it’s affecting giving me chest pains, terrifies me I just don’t know what else I can do to get help
I’m so sorry to hear this. Maybe try looking up a provider on this link. Many offer virtual therapy, so distance won’t be a problem: nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php#vir
My wife had an aneurysm in her frontal lobe as a child had her first seizure at 22 been dealing with them since the last 10 years her EEG have been normal we live in the Memphis area. Is there doctors here to help us please help
If you go to the following link, they have options for virtual therapy for PNES that can be available in states including Tennessee: nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php#vir
PNES is a real thing . I have PNES . Mine is do to stress. I do the blank face. And shake my head. And can’t move any of my hands or legs. And it lasts for about 10 minutes
Ive suffered these since about age 6. 1st time was at Dr watching my older sister having blood drawn. Most times now its due to medical procedures, dental work, accupuncture sometimes, vaccination and very occasionally from extreme emotional distress. Its a horrible horrible feeling, i often cant stop vomiting for an hour afterward, and I feel extremely weak and tired for at least 24 hrs. Certainly not something you could or would want to fake! Im glad to know what this condition is, and very interesting to find out some of the correlations/comorbidities. Great video, thanks!!
Dear Nicki,
Thank you for sharing your experience. I hope it will help other viewers understand that this is a real condition that creates suffering and that we need to offer help and compassion wherever we can.
Wishing you much courage, health, and healing.
Love,
Dr. May
All of my kids and my husband have what you describe and have been diagnosed with vasovagal episodes. My kids were investigated closely because I do have a daughter who had epilepsy as an infant. Have you ruled this out?
@@chocoholicaims DIfferential diagnosis can be challenging (see my second video), and it is important to have a thorough medical work-up. Sometimes similar symptoms can happen with vasovagal issues, but other times it is PNES or other conditions. A video EEG is the standard test for someone when it is unclear as to whether they have PNES or epilepsy.
❤❤❤😇 😇 😇 🤗
PNES has a couple of working terms but i know of them as dissociative seizures and I like that term for me as apart from the seizures I also struggle with other symptoms of dissociation, like dissociative amnesia and DID. They usually pop up for a period of a couple months and then go away again. I had one for the first time in a little over a year today they always exacerbate my symptoms of dissociation and also recovered some repressed memories about my molestation
Thanks for sharing your experiences and insights. I hope they will be helpful to others. ❤️
Very helpful! I will share this with my family so they can have a better understanding of what is going on with me. Thank you for doing the research and for sharing this presentation with providers. ❤
Thank you! I definitely hope it will help your family understand you better! 🙏
I’m so doubtful that PNES is actually a real thing. The description of what PNES is, fits the description of epileptic symptoms. EEG can be normal for 50 percent in an epileptic seizure, it depends on where in the brain the seizure occurs. And there are 60 different types of epileptic seizures. Focal seizures can be very bizarre and atypical. Epilepsy is very traumatic for the sufferers, of course these patients have trauma symptoms. And the brain of a traumatized person changes so it is not really believable that the medical professionals can diagnose PNES by the evidence of trauma brain. And stress is one of many common triggers for an epileptic seizure and depression is a side effect of epileptic seizures. Epilepsy has been misunderstood and stigmatized since history. And this possibility of a pseudo seizure diagnosis just perpetuates the problem. Now epileptic patients are not being taken seriously and they are being put in a situation where they have to prove that they are actually suffering from the disease. And then there’s the possibility of having both epileptic and non epileptic seizures? That’s so convenient for the medical community when they have a difficult case.
Why don’t you email one of the actual experts on PNES with your questions…. They could probably explain the science better than I could. There’s a lot of good free journal articles about the topic as well which might help.
I am a person with PNES they are definitely real and sometimes terefing cause you can hear everything that's going on while you can't control your body and you can't have high emotions or a seizure can be triggered and if your body goes through something new a seizure can happen
@@purplestew4000 so sorry that you have to suffer like that! That does sound terrifying. It also sounds like the symptoms of an epileptic simple partial seizure. I suspect that you were misdiagnosed with a psychological condition because focal seizures are bizarre, atypical, and complex. When you may very well be having epileptic seizures. But it’s easier on the medical professionals in neurology to send a difficult case to another practice under psychology… the psychologist is not knowledgeable about the complexities in epilepsy and will not be able to diagnose the patient with having true epileptic seizures. So your diagnosis of PNES is a one way street without the ability for a misdiagnosis to be redacted.
@@evalisabowers8898 they told me I have both epilepsy seizure and pnes seizures
you are missing a key element . NEPS do not respond to seizure meds like kepra and the seizures are different even if some of the triggers are similar. Just because you don’t understand something doesn’t make it any less real
Used to send them out for physical eval. They tend not to hurt themselves. It was a psychiatric unit. We could see secondary gaines for malingring. But pnes needed to be explained by physicians. Interesting presentation.
Thanks for watching! Yes, as I'll discuss in one of the upcoming PNES videos, it is usually not necessary (and often potentially harmful) to send people to the ER after a PNES event. If the episode can be managed at home or on a psych unit without physical injury, it is best to stay put.
It is also common for hospital staff to blame the person, assume malingering, and insist the person is faking or "trying to get attention." (Which is why I prepared this presentation to begin with!)
And while there can be factors in the environment that can be "reinforcing," it also does not mean that the person was doing it volitionally or "just trying to get attention." (Same idea with behavioral addictions such as self-injury or foreign body ingestion).
I would recommend the book "In Our Own Words: Stories of those living with, learning from and overcoming the challenges of psychogenic non-epileptic seizures (PNES)" as a way to get an inside view of what it is like to have this disorder. It is a great way to build understanding.
www.amazon.com/Our-Own-Words-psychogenic-non-epileptic/dp/1516836480
Thank you for making this video on PNES. It was very helpful on a professional and personal level.
May I share this on my business page? I feel that this may help a lot of people to understand PNES and be more aware of it.
Thank you. And yes, please feel free to share. This is the first of 3 parts, so you’re welcome to share the playlist if you’d like.
@@jennifermayph.d.2761 Thank you 😁👍
thank you♡
I’ve been having these for nearly 5 years and no one will help me because I’m not suffering from anxiety and depression, I’ve been called a lier by 2 drs and now I’m just passed around like a toy, I only seem to have them when laid down, the last few months I’ve been having them non stopped through the night that’s lasting 5-6 hours I’m absolutely exhausted and fatigued, I also have 2 heat conditions which it’s affecting giving me chest pains, terrifies me I just don’t know what else I can do to get help
I’m so sorry to hear this. Maybe try looking up a provider on this link. Many offer virtual therapy, so distance won’t be a problem:
nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php#vir
My wife had an aneurysm in her frontal lobe as a child had her first seizure at 22 been dealing with them since the last 10 years her EEG have been normal we live in the Memphis area. Is there doctors here to help us please help
If you go to the following link, they have options for virtual therapy for PNES that can be available in states including Tennessee:
nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php#vir
How do we find a specialist?
Take a look at this link. It lists specialists by state:
nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php
PNES is a real thing . I have PNES . Mine is do to stress. I do the blank face. And shake my head. And can’t move any of my hands or legs. And it lasts for about 10 minutes
Your description matches the description of a partial seizure.
❤❤❤❤❤