Pyschogenic NonEpileptic Seizures -Advice/Support
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- čas přidán 21. 11. 2016
- Let's face it, this condition sucks! But what sucks just a tad more is feeling alone with it.
Hopefully you'll feel just a little less alone after this!
Follow me (and my servie dog) on instagram:
@reid.service.dog
Facebook support group for PNES: groups/59759... - Krátké a kreslené filmy
Hello, thank you so much for posting that u have no idea how good it feels to not be the only one to have these disorders. My name is Sienna and I have PNES . but a long time ago I used to only have anxiety and the later panic attacks and my freshman year of high school I started have what doctors call it a mental illness of PNES and supposedly its all in my head. Doctors don't know how hard it is to actually feel the pain and suffer or even pass or black out while having one. it really hurts and doctor have the nerve to tell me its all in my head and too see a Therapist or go to counseling. I just hate how the Hospital is a place to go if ur feeling sick and little things as u said a headache and they treat u give u medical attention but when ur actually physically thrusting ur body back and forth ur hand curls up,u can hardly breath ,chest pain and etc. The doctors can't do anything about it. But just look at you saying "Its all in ur head".
Hey Sienna! Unfortunately we have all heard the same speech from the docs.. Hopefully one day there will be some education out there for them! In the meantime, no you are not alone! If you ever want to talk, feel free to message me!
I'm really sorry you go through this, and same with so many others. It seems PNES can show up in hugely different ways (I am guessing a variety of underlying causes -- most of which I believe someday the underlying causes will be found and usually physical other than the standard brain chemistry issues of stress/trauma/mental illness that gets the blame now). I have seen videos where the PNES looks like someone having a horrible PTSD reaction (and the video was labeled as the PNES and movement issues being caused by trauma... If someone is screaming words that sound like flashbacks to rape or something, yeah, I could I see that as being horrible PTSD symptoms of some kind).
EEG's can't detect deep brain waves, though, science is always improving. These types of seizures might have all kinds of physical causes -- many maybe a hidden (so far) form of epilepsy and others for other reasons. Epileptic seizures can also be triggered by stress.
I have a variety of physical issues, some rare, but some very treatable and not that hard to figure out with proper testing and seeing the right specialists. Everything has been unfolding a lot for me lately -- but the thing is, if I insist on a test a doctor doesn't want to do, or prove I have a condition they say I don't have (via an expert doing bloodwork, scans, etc. where the pathologist flat out says I have the condition I suspect) doctors can be wretched to me. I am ALWAYS by certain doctors (whom I drop after this happens) told everything about me is caused by anxiety (even the horrible Bartonella rash I had which looked like terrible marks like I had been whipped from my knees up to my chest -- I have scars and it looked like on google images only worse). Cleared up by someone who actually knew what it was, but I hated having to see any other doctor during that time because they would question one of the meds I was on for it (not overly dangerous -- but traditionally used for TB more commonly; also used for Bartonella by experts).
Okay, that was a huge tangent and this will be too. Sorry! But I had a number of TLE seizures on a 24 hour EEG a few years ago. I waited over a decade to see a neurologist after the first declared I needed electroshock before even doing a standard EEG. Totally scared. But then I was diagnosed, treatment helped a while. I get horrible daily migraines during the times I go through daily multiple seizures (like now again). But I went through two doctors *after my recent proof of TLE by EEG* who told me I had pseudoseizures (and were basically like "see ya!" and were incredibly rude. I did get a new neuro, but didn't mention I was showing signs of seizures and migraines again until a month ago (they started in the spring and slowly progressed). The two doctors who took away my diagnosis made me too ashamed and scared to even mention what I was experiencing (plus I rarely am aware when I actually have the complex-partial vs. the post-ictal state vs. other weirdness and illness and migraines, etc.)
Doctors are so rude. People are so invasive -- you feel you have to prove to unqualified individuals you don't even know well that you have a disability. It is so wrong. Oh yeah, and I only was finally convinced I was back in the seizure loop because I had a recent 24 hour EEG again because of horrifying sleep issues and it showed TLE seizures on the left side.
I have PTSD, possibly other psych issues (don't really know -- I have physical illnesses that can mimic psych issues, some I am recovering from, the other non-recovering one besides epilepsy being Ehlers-Danlos). I hope to see a neuropsychiatrist because my good psychiatrist just left to do full-time research. Tons of therapy occasionally helped, usually with more typical and concrete problems or if I just needed to talk (codependency, feelings of shame, etc) but not with the most severe stuff. Therapy with the right therapist can be great for a lot of people, totally healthy people. But everyone is unique and it is simply lazy and ignoring that science is continuously improving -- many symptoms will eventually be found to have underlying physical causes NOT caused by trauma or anxiety or depression or anything else.
Ugh. I feel really really bad because I get so much abuse from doctors when I nearly always come back with crappy tests showing problems (at least if I do my research to find the right tests to get issued), and then people with conditions like yours just get ignored and not taken seriously -- I am sure treated a whole lot worse than me by the majority of doctors (in my experience the majority are pretty crappy).
I wish you the best. I am so sorry you deal with all this. How devastating to not know what to do to improve the situation :-( You and other PNES sufferers are in my thoughts.
I'm so grateful that you shared your experience and with such honesty. I have really struggled with this diagnosis after many years of being treated for epilepsy it was a shock. I found it hard to accept and had an element of shame, wondering if it was all my own doing. Regardless of the diagnosis it still affects my life in so many ways. Lost my independence, my career, my job, family and friends, became reclusive and isolated and of course depressed. Life has changed so much. I'm a different person. I don't recognise myself at times. Thank you so much for sharing and may I ask it has been a while since you have uploaded but it would be fantastic if you could upload another as to how things are for you now?
I agree with the idea of not going deep into explanation of the condition; when there is the need to give the explanation to those who are not doctors, it only creates confusion and doubt. My son has PNES. And, when we had to give an explanation on the type of seizures he had, especially when dealing with paramedics, ER doctors, employers, school staff, etc., we used the term "non-epileptic seizures." And, I have had to reassure that they are the type of seizure that doesnt hurt the brain. Although, handling events are more difficult for him, because he is 6'3" and 200#s. KEEPUPRESEARCH.
I have had arguments with many doctors on how they present themselves to my son. Many don't understand or live with the condition day in and day out. I have been told that its all in his head, only because they dont know what really causes PNES or how to control it. He has had a record of sudden drops in blood pressure and blood sugar during his events, but they normalize/stabilize when he comes out of them. So, they ARE also physiological.
My son is also treated for migraines-with and without auras, and hemipelegic.
My so also has a motor tic and experiences muscle spasms in all areas of the body and they vary in intensity -- from ripples under the skin to severe jolting movements. Fortunately, he doesn't experience them on a full time basis. But, he has seriously pulled muscles in his back from time to time and he sees a physical therapist, and trusted chiropractor/osteopathologist. PNES interferes with his quality of life and social involvement.
WEMUSTSOCIALIZE
thank you so much for posting the above video I have been true this the same way it's being I can remember one time is in the emergency room and a shoulder dislocated and I had a seizure or pnes indeed nurse came in and she said stop faking they aren't real seizures so in like it really did it annoy me. also u right the understanding of pnes that people is crap i have been there so mean times in the ae
i have pnes just over the last 3 half years.
it did stop me doing things and can i just say you have help me by showing me that it just not me that have pnes
Writing my comment as I hear you talk....
You are NOT alone, luv. I had a small seizure just 30 mins ago. I've done just what you did. Research, test requests, everything. Exactly, you wanna be validated, and the neurologist I saw at the Alfred Hospital just yesterday was quite dismissive although I had a seizure RIGHT IN FRONT OF HIM when he asked me to stretch my arms out and count backwards from 100 in groups of three. I got to 97, and seized. He says, "there's nothing wrong with you neurologically". So, he was keen to shake my hand and ship me off to a psychologist. SIGH. No. It's not a need for attention. I'm pretty comfortable in my skin. But I'm a spoonie. I've been sick so often and so hard that something HAS to be broken. They just haven't found it yet. But I fear that when they do, it will be too late. I'm just resigned to it now, and am just living life between seizures. But you are not alone. We ARE valid. We are NOT faking, and we ARE here for each other. Follow me on Instagram @arvoguard. Luv from The Down Undah Yank in Melbourne, Australia!
This is so me. It makes you feel so lonely. And makes me feel overwhelmed and like a burden.
Mine started up after a year of chronic migraines. I ended up having a hemiplegic migraine and half of my body didn’t work. My headache Neurologist said it’s absolutely possible when your body is going through so much stress or pain.
I have had migraines all my life it started when I was 4 I got hit in the head and it nocked me out i have been only have seizures for a little over a year and i am struggling to understand how this could be happening to me
Hey Molly, I have NES too an I appreciate your videos. Soon I’ll be making some myself. How are you doing now a days?
I have had this condition for 6 years now, but I honestly don know what to do anymore and its crazy that I also had chronic headaches for 7 years and most of the time they listened. I have suffered from ER doctors or certain doctors being misunderstanding and very rude. I ended up with 2 concussions, in the hospital so many times, and being taken advantage of on multiple occasions. I really just want to live my life and go to college without worry. My family isnt always as understanding either, and I felt the same exact ways you explained. How did you or anyone find an service dog for PNES? Was it expensive? People say I should get one.
Sound advice.
I was just diagnosed with PNES plus I have another neurological condition called dystttonia, and I have PTSD. I was wondering what treatment methods have you gotten? I had a good team of neurolgist and psychiatrist that are going to do a 12 week coping and therapy program that is supposed to help to cope. WHat has helped you?
I have epilepsy and non epileptic seizures and panic attacks
18 years trying to understand this
Still kinda confused
Can you drive?
Unfortunately, I see patients like you and it is difficult to deal with it
Epileptic seizures is different to non epileptic seizures thay are you very different
I have a both of them and you carnt say you have epilepsy when you don't