Ask the Experts: Spotlight on Nonepileptic Seizures Part 1

[@Tara-._.-]

Thank you! I feel strongly about not using “pseudo seizures” as well. Particularly in light of the fact that these occur -to- the patient as a being and don’t originate as purposed by them. #SayNoToPseudo

[@hannahg39]

I agree! I used have PNES seizures but not anymore! Now I just have epileptic seizures. How are your PNES seizures now?

[@hipplife]

This is amazing! Thank you so much for putting together this interview. You are all unbelievable.

[@carmenmcknight3404]

This video is awesome, it explains a lot to me. I began having these "seizure" episodes right after I was diagnosed and treated for Lyme Disease. After the antibiotic treatment, I began having these episodes- I still have them- often (from two times a day to once a week or even more rare). The EEG triggered such an episode that lasted for a couple of hours while diminishing in intensity but the electric brain waves were normal. The neurologist was unsure as to why I was having these episodes. Another ER trip, recently, I was given seizure medications since I had one of these episodes and the medication worked wonders, bringing me out of it. I haven't listened to Part 2 and 3, but I was hoping you had some sort of insight into this phenomenon. It's clearly associated with Lyme and it's very real. It could be a hexing reaction manifested neurologically or it could be something else. Any insights are greatly appreciated. I know others who suffer from similar episodes would love some insight into this.

[@EpilepsyFoundationNational]

Hi Carmen. Seizures can occur in people diagnosed with Lyme disease after illness onset. If you have not already, you may want to visit an epilepsy specialist or epilepsy center to talk to them about your specific symptoms and how it may relate to Lyme: www.epilepsy.com/living-epilepsy/find-epilepsy-specialist

[@addhoc256]

@@EpilepsyFoundationNational what a strange answer: she just told you she had a seizure and had lyme. So why are you telling her that 'people with lyme can have seizures?' She just told you.

[@WorldRenownedPsychicBearMedium]

Mine developed after catching meningitis on a flight. It started with 1 sec fainting to now seizures. I dont have stress. Im in a great relationship and feel very meditative in fact the more i relax that when mine hit noise causes them and light. Iv not been tested for lymes disease but i may get checked out now. Thanks

[@didunsmuir2821]

It is important to note that not all non-epileptic seizures have a psychological cause. I had non-epileptic seizures and FND symptoms due to an adverse reaction to medication.

[@Ouchimoo]

Me too! Ironically to seizure medication.

[@bxstar5276]

They never seem to mention this? Can’t find it anywhere. Juts because they can’t see something on an image - yet they say it’s all psychological causation

[@WorldRenownedPsychicBearMedium]

I also had this from baclofen

[@01villaz]

Thank you so much! I needed to hear this. I was diagnosed with Pseudo Seizures and never loved that term. But had to get use to it. #SayNoToPseudo

[@b00ty.w4rrii0r]

Honestly, I hate that term more than the seizures themselves. It reminds me of when I ended up in a mental hospital because of my seizures or in the medical unit when I got locked up because the doctors didn’t know how to respond to my “non-epileptic seizures” not showing up on the EEG or catscans even though I tried to explain to them. I was still having real seizures, they still made me flop around like a fish, still made me blackout, still caused me endless amounts of pain, still made me bite my tongue & choke on blood and foam, they were just stress induced seizures. #SayNoToPseudo The epilepsy experts need to stop treating non-epileptic seizures with medications for epilepsy as well like Kepra. It hasn’t helped me at all and from what I’ve experienced so far, it has only created more neurological problems, much stronger (what might be non-epileptic) seizures and more consistent. I rarely leave my home these days.

[@oc3694]

Mine definitely aren't fake. I've had two brain surgeries, radio treatment to my brain and chemotherapy. It's scary as hell just walking do the street one second and then waking up in an ambulance or hospital bed. How can yall say,or tell someone they're faking a seizure 🤨?

[@Sarah.smith22]

Very well said 👏 👍... This happens to me and I got diagnosed with factitious disorder because they said I was faking it for attention..That totally destroyed mine and my families life...

[@clairerobertson4442]

Good questions good answers I have this every day on some level thank you. If its not a seizure if looks and feels like one so??? Weird v physical. No treatment for me. Topiromate did not work for me. I still think I should be tested for epilepsy to rule it out instead of just a guess.

[@aliciascott3176]

As a medical coding educator this is something that confuses many coders. Thank you for the information. I can share this with our coders to educate them on the verbiage they may see. Our goal is to get to the highest specificity.

[@sarakimm4125]

I appreciate this video so much. I have read the book and loved it too.

[@FallenMuse81]

I now refuse to go to the hospital because of how bad they treat me, even though I had around 30 seizures that day.

[@oc3694]

30 a day holy crap.🙏

[@Noname-hc1fn]

I know how you feel

[@bxstar5276]

I’ve done that as well. Ended up in A&E and was told I was having a PA and need to go back to gp. It was total hell. I was half a vegetable when I came too and treated like a problematic crazy person - told to get my meds and leave the hospital by the mask lady as I couldn’t talk in that moment. No one should be treated that way.

[@FallenMuse81]

@@bxstar5276 I'm so sorry we get treated like second class people.

[@Spacecadet499]

Yeah well calling it psychogenic makes ppl think it’s also in our heads or just a panic attack

[@amandaellis179]

Hi I stay in SA and I've tried to find out more info about this on the foundation here and Noone can help me all I get is chat to a neuro do u have info and what is the difference between pnes and tonic clonic partial sezuires ?

[@need2know739]

I have a question, Epilepsy runs in my family on the male side. My older Brother and other older brothers son have Epilepsy. I have never had this, however in the past yr anytime I get anxious, upset ,raise my voice I get weak kneed and must sit down? I had a complete leg lose with tremour or brain numbness One time at work after having to raise my voice to call over machinery to a co-worker. And just this morning after having a not often verbal dissagreement with my fiance'I lost control of my legs,slammed my chin on the counter and split my lip open?? It only last seconds and have complete awareness and surroundings but lose my legs from under me?? If im calm, im fine if upset and evertime now almost,,I lose function? Any feedback would be helpfull.

[@hannahg39]

I have temporal lobe epilepsy and I used to have PNES seizures however when my neurologist told me they were PNES seizures he told often when someone finds out they 'aren't really having seizures'(his words not mine) they go away. Thankfully I never had another PNES seizure again!

[@betot9484]

In my opinion most of PNES are a kind of Paroxysmal Kinesigenic Dyskinesia or any other kind of paroxysmal disorder that have mainly an organic origin and could be explained with a thorough scanning of genes variations or any other method, even if such method has not been discovered. However, doctors will immediately associate these seizures with psychological reasons. In my belief its such a crime to do that because patients forever get stigmatized as weak minded persons that just intend to blow some steam to deal with stress or to get the attention of others

[@bxstar5276]

I wish those doctors could experience one - for science

[@Progressive_Alien]

Is DPDR a Dissociative seizure?

[@haunnacornejo1498]

Pnes im just learning of this i just found out bout this yesterday and im quit sad to be honest I feel kinda crazy and I don't like it to be honest... ugh 😑 im glad im finding videos on these though thank u so much for putting up these videos!!

[@TheKathleenR]

Can you get injuries from NES ? I have been getting injuries and they believe I have nes

[@jeroen5736]

how do you diagnose Nonepileptic seizures ? do you go to a Psychiatrist ?

[@Noname-hc1fn]

Exactly

[@bxstar5276]

Nooooo they are the worst for this!! I was just told it was a “breakdown”

[@WorldRenownedPsychicBearMedium]

Also i know lots of people with high prolactin that have fnd and non epilepsy seizure. Some eeg are not deep rooted enough to pick up seizures one normal eeg and your diagnosis is this.

[@melissashawnmooringredfiel8634]

I have a history of childhood epileptic seizures and was diagnosed with non epileptic seizures at 28 years old. Can you have these when your sleeping as well?

[@robertdeffenbaugh9004]

Yes. In fact more Non Epileptics have seizures in their sleep than Epileptics.

[@melissashawnmooringredfiel8634]

@@robertdeffenbaugh9004 good to know because I have had some in my sleep as well and have been told I now only have non epileptic not epileptic seizures

[@robertdeffenbaugh9004]

@@melissashawnmooringredfiel8634 Ask a Doctor if Brain Surgery is a possibility. I had my Seizures surgically removed when I was a Kid.

[@Rocketgirlz]

Thank you for this video. :)

[@vidayap307]

Do you know of a doctor on Maui that could help one with PNES???

[@jettavr6power]

I believe I suffer from these. The episode came on like a panic attack and then I locked up and started shaking uncontrollably. Weird thing is I know it's going to happen, I can feel it creep up on me. After my first episode, I looked up what it could possibly be and found NES. Upon reading the description I immediately had another episode, same as the first. The anxiety of discovering I might have this put me into an episode!! How can I tell that to a doctor without sounding crazy?

[@b00ty.w4rrii0r]

Whatever you do, try your best not to worry. Being overwhelmed from anything stress, anxiety & fear related is going to trigger your nonepileptic seizures. I suggest buying one of those composition notebooks📓to write down all of your experiences in because your brain is not going to remember every episode, it’s not going to remember every event leading up to the seizure, your brain is probably going to do the opposite and isn’t going to want to remember any of it and will probably try to flush that memory down the drain or do what my brain does: hides all the traumatic experiences or anything leading up to my anxiety attacks or seizures in little locked pockets & refuses to unlock them which makes it really hard for me or my doctors to understand what’s going on but my it’s just my brain trying to protect itself in the only way it knows how to since all the people in my life who were supposed to protect me or help treat the problems have only caused more problems or brain damage. If you ever need to talk to someone who understands and is experiencing similar problems without fear of being judged or called crazy, feel free to send me an email: [e-mail]

[@moniquedewyk6341]

That is exactly the kind of thing they ask me about. If you meet a doctor who makes you uncomfortable or you are not confident about their qualifications I would suggest that you look for another opinion. It's not their job to judge you. They are supposed to help. That is what they are paid for.

[@dutes333]

can NPES happen while sleeping? (one time out of 7)

[@kuroiflyerneko]

I was confused about that too. I tend to have most (but not all) of my events when I think I'm sleeping. My vEEG actually showed I was just waking up. I just got diagnosed with PNES (this month) but I lucked out with my Psychiatrist spending time working with people with PNES while she was in private practice. She suggested that a possibility was that either while in REM I was having dreams that cause heightened anxiety and that the process of waking up, in which your body uses the hormones/neurotransmitters Norepinephrine, acetylcholine, serotonin, and histamine among others, was enough to send me into an event. This is only a theory though. So basically my understanding is if we reduce the amount of anxiety I have (even if I don't realize I'm anxious) then the normal processes the body does when waking up will not trigger an event. It'll be interesting to see how the psychologist handles this. I know you posted a year ago but just tossing that out there.

[@christinayates2496]

Yes I’ve had it happen I couldn’t move but was conscious and aware

[@idtxb]

I really need help I had 2 non epileptic seizures and felt horrible pain during them I was awake but my mind was away from my body. I could see things. The first time it was like infinite anxiety i was a ball rolling down a infinite hill. The second one was 2 gears grinding together i screamed in pain. I was very dizzy and spinning during them.

[@nadaghazawy7068]

Can prescribed glasses help lessen non-epileptic seizures , as I was told I had non-epileptic seizures which I don't believe but I have discovered my prescription glasses have stopped my seizures from progressing including reducing my myclonic siezures I get some slight movements through but not as severe as when I take my glasses off. I have mild hyperopia and astigmatism so my eye shape isn't round like most but is oval shaped.

[@Samo-73]

My eeg came back abnormal but they still diagnosed me with NEAD. I no that if a eeg comes back abnormal it’s epilepsy coz it’s effecting the brain. I think these people need 2 do more research. A seizure is seizure no matter if it’s epilepsy or not. So am gona call mine seizures & i dont care wot anyone says.

[@believeinjesus2677]

I agree with you 😊

[@Noname-hc1fn]

Totally agree the same with me my EEG came back normal and my seizures are getting worse they said it non epilepsy I had 7 back to back seizures after the EEG and I'm still getting seizures it's now effecting my speech and walking

[@patricianebe9885]

Can a person have both epileptic and non-epileptic seizures?

[@doemydear9651]

Mine came after I hit my head in a car accident and needed spinal cord surgery on my neck

[@jennarotella9036]

Is that aslo knowen as phesdoseizures?

[@believeinjesus2677]

Yes but that's a outdated term

[@jennarotella9036]

Savannah, my Dr. wanted to rule out this term phesdoseizes and I'm a Myoclonic epileptic, so the pheso part was definitely ruled out

[@kathyc3190]

Is it possible that changes in normal sleep schedules can cause PNES events?

[@EpilepsyFoundationNational]

Lack of sleep or dramatic changes in a sleep schedule can be a trigger for all people living with seizures.

[@angelblue7779]

The condition also includes uncontrollable movements during an episode as well as very often speech. Wouldn’t these be considered neurological? How can a neurologist decide what is psychologically wrong with a patient when an actual Psychologist disagrees with the diagnosis? Sounds as if there is a problem here of not understanding exactly what they should be looking for. No answer, no problem. 😡

[@hazelmaguire8447]

I was diagnosed with epilepsy aged 3 and subsequently have been on anti convulsants since. Along with that aged 13 had to go to a residential school for epileptics, living away from my family. Medication, hospital appointments, admissions have played a part of my life for all of my life. In the last couple of years I have been told I have NEAD. Along with epilepsy I have a genetic condition called Charcot Marie Tooth Disease, also a neurological condition for which anti convulsants are used to help with the symptoms as I have muscle contracture, spasms, nerve pain etc I am not happy with this diagnosis NEAD, I feel it is all a part of my Cmt? I have no mental health issues. The neurologist wants me to come of some medications which I was prescribed by other consultants eg geneticist and my rehab medicine consultant. Please can you advise?

[@hannahg39]

I'm sorry you had to had to go through all that. How is your health now?

[@nadaghazawy7068]

My advice trust your instincts if you don't agree with the diagnosis then your probably right I would find a different neurologist but keep taking your meds advised by the other doctors till you get a definite diagnosis.

[@lynnebehrend9587]

Has there been any research in having hypnosis and then getting PNES? Hypnosis started mine.

[@b00ty.w4rrii0r]

I would love to talk to you about your experience with hypnosis & nonepileptic seizures if you would be kind enough to share with me. I am easily triggered, I have a lot of anxiety, mostly social anxiety and very depressed so I understand completely if you don’t want to talk about any of this because you don’t want to trigger an episode. It’s hard enough to talk to friends, family, “so-called specialists” that ultimately don’t know shit about what we’re going through, so I understand not wanting to talk to another stranger about your experiences. Sending lots of love! & hoping tomorrow is a better day

[@nadaghazawy7068]

That's interesting what kind of hypnosis were you doing?

[@WorldRenownedPsychicBearMedium]

Was this past life regression?

[@kathyc3190]

It's been 20+ years of numerous doctors, ER Visits, Hospitalizations, EEGs, MRIs, CT Scans that never showed ANYTHING...and thousands of doses of medications with adjustment after adjustment that never seem to control these "seizures". Funny that it took a PA watching a video of my son's "seizure" to mention the possibility of PNES. She said it didn't look like a normal epileptic seizure and I should show it to his psychiatrist this week when we go. Would have thought that his neurologist might have mentioned this possibility at some point. I also thought it was just my son who had experienced these episodes while sleeping or possibly just waking up. It seems like at least half of these episodes occur when waking. However, until the neurologist, psychiatrist and psychologist get on the same page it seem like nothing will get accomplished and patients will be doomed to a life of uncertainty. Thanks for all the information and for listening.

[@ZaneIsOkey]

Please help me, I have had undiagnosed "seizures" since I was 15, I'm now 41. They can range from various types, i get flickering eyes, where my eyes rapidly side to side everyday. I get others where the eye movement goes from that, to me getting extremely fatigued, my heart will get a sharp pain, my eyes roll back and will jolt /shake , breathing is hard and sometimes stopped for few seconds. My hands are shaky alot when im having a mild one with very rapid eye movement and rolling back. I am completely aware the whole time. I have been for every test imaginable but they never find anything. No one will try medication on me .

[@b00ty.w4rrii0r]

www.epilepsy.com/living-epilepsy/find-epilepsy-specialist

[@b00ty.w4rrii0r]

I’m sorry you’re going through this living hell... I have been dealing with something that sounds very similar since I was 10 (now 26) and the only thing that has helped me has been to treat the underlying problems like my PTSD, anxiety, depression & agoraphobia. Klonopin has been a life saver because its an anti-convulsant as well as an anti-anxiety medication. Maybe it will help! Sending lots of love your way & hoping tomorrow is a better day xxo🖤💋

[@ZaneIsOkey]

Thanks Montana x I'm glad you found some answers. I will look into that medication , thanks for your response x

[@Noname-hc1fn]

If you ask me they need to do more research psychiatry is one field and neurology is another if you ask me they really aren't doing anything for people who really need help for seizures

[@doemydear9651]

What about gray matter on white matter. After head injury. They minimized it. Hmmmm

[@WorldRenownedPsychicBearMedium]

Anyone else have cavum vergea on brain with this as adult?

[@Rob-dh3rp]

What if you only had one case of an Aura of intense fear but been two years since it's happened

[@EpilepsyFoundationNational]

You might want to consider seeing a neurologist or epilepsy specialist to talk about this concern to see if you may or may not require any treatment.

[@Rob-dh3rp]

@@EpilepsyFoundationNational can it a panic attack just last 10-20 second was all there no memory confusion and nothing happened after

[@EpilepsyFoundationNational]

@@Rob-dh3rp Some type of seizures can feel similar to panic attacks and intense feelings of anxiety. A neurologist or epilepsy specialist can help you determine what your symptoms are specifically and whether or not they are seizures. It may be helpful to create a detailed log of what is happening to then discuss with your doctor.

[@addhoc256]

Read nobelprize winner Kandel and the website of Harvard's Centre for Childdevelopment. Neuroscience has changed a lot after this video. This is old and not accurate. The term "psychogenic seizure" is no longer in use and never really has been. Harvard explains on their site exactly how trauma causes changes in the brain and how this effects the stressresponse. There is also an online course of Alberta Family Wellness about current neuroscience that went to a major paradigm shift. And that made neuroscientists around the world loose that term once and for all: it is not called psychology anymore if you are dealing with seizures you need a medically trained person or a pedagogic that took the online course Brainstory or the latest Harvard newsletters.

[@moniquedewyk6341]

I have to disagree about your comment about terminology. About one month ago I heard an ER nurse and a paramedic using the term psycho genetic in their discussion about my case.

[@addhoc256]

@@moniquedewyk6341 Harvard Child development centre has info leaves on their site and some explaining video's

[@moniquedewyk6341]

@@addhoc256 I was only making a comment, not asking for advice. I was stating that I heard the discussion by two medical professionals at a hospital though I did not mention that it was a regional seizure clinic. It was in May of 2021 so that would indicate that at least in some places that terminology is still in use.

[@doemydear9651]

Some ime doctors say malingering . Far from it. I wish that day I never was in that car accident . I had life long pip but my state took away all my life long health care and attendant care. My doctors say I probably have epileptic also. They side my life span is limited now. Had 4 more concussions. With this disability have no rights. They say your faking. Michigan will have the blood of those on there hands, they even cut off quadriplegic's. . My doctors were spot on 15 years. So sad they passed the law in the dark of the night.

[@Sarah.smith22]

I have just been diagnosed with this.. Event's?? Sorry but you should suffer this debilitating illness .. I go into a proper seizure that's why it's called seizures... I don't know they are happening and never remember them.. But they distress my family when they happen and it destroys lives...

[@junipersnow1]

Yah, obviously they learned more since these out of date Phycologist put this up and Yes "Events" is more Doctor BS, I severely bite my tongue (cause im missing some teeth, not cause its a Epileptic Seizure) and did have one in my sleep, but don't have Epilepsy in my family) ... Good info but it is almost a Info-commercial for psychology... Yes a good psychologist will help with our PNES but for me I notice it was only happening during PTSD moments, Yet both times it happened to me so far, My diet was not very good/bad, Soon as i started taking large amounts of "Trace Minerals" daily, intense Exercise regiment and eating a very good pre made meals Healthy diet, My migraines went away and I feel I can manage my unhealthy PTSD situations better... I have not made it a whole year yet, but I do feel I can prevent them easier.. My MRI was clean, still waiting on EEG. I am educating my local doctor, look to meet a Neurology doctor soon.

[@sopansopiansagala8682]

seizures = the head/brain lock epilepsy = sea salt epilepsy seizures = swallow a tooth

[@pamzietv6672]

i think that a patient with PNES should also be told that with this condition, your making this up. and to late them know that they will be OK. because some patients are left with the Question. why me why dosen"t anyone believe me.

[@Spacecadet499]

Wrong stress is not the root cause

[@guardianangel5013]

Non epileptic first aid book