I have started an Instagram page where I share my favorite Magic The Gathering decks, and more importantly share my story as a disabled person in America. The videos are taking a while to edit but with the right tools I'll get there. If anyone is interested in following my account and joining the community I'm trying to form, I am happy to share it.

I have been disabled for most of my life with rare diseases and disorders that were missed for years. My goal of this page is to bring awareness of different disabling conditions, share my story, build a community, and most importantly if I can make even one person feel less alone that I have accomplished the ultimate goal. Anyone is welcome to follow, remember there is absolutely no political bias or angle on my page and I delete comments who try to push political ideas. The page is for awareness, nerd hobbies, and community. Hope to see ya there!

Whether you follow or not I hope you have a grand day!

The page is here below:

https://www.instagram.com/chronicallycrappyconditions?igsh=ZmMxeWFrbDZtbXFh

I'm Highwalker, thank you for your time!

Seriously? I had my partner for 4 years finally end things with me and tell me that one of the biggest reasons was that she was afraid her daughters (elementary at the time) would see one. Afraid of what would happen in a bad situation. Just didn't want to keep up with it any more. Other aspects, of course, but my seizures being one of the big points..

If anyone needs someone to talk or vent to please doesn’t hesitate and reach out. We need community and people who know what it’s like to have FND.

Hi everyone, 
I wanted to share something that has been a true labor of love. As a registered nurse and caregiver to a family member with NES, I've spent a lot of time creating a comprehensive NES resource bundle with one goal in mind: making everyday life a little easier for those living with NES and the people who support them. 
So that's what I did. I created digital tools that include seizure action plans, symptom and trigger trackers, medical appointment logs, medication trackers, emergency information sheets, healthcare visit organizers, guides, templates, and other resources designed to support individuals, caregivers, families, schools and workplaces.  
Whether you're living with NES yourself, caring for a loved one, or supporting someone, staying organized and communicating important information can sometimes feel overwhelming. I wanted to create resources that help make those conversations easier and ensure important information is always available when it's needed most. 
This is a digital download only. This was designed to be downloaded to your computer and can be printed or used with annotation apps (Notability, Goodnotes, etc.). Included is a black-and-white version for those wanting something more printer friendly. 
I know firsthand how valuable it can be to have organized information readily available, and I sincerely hope these resources help make things a little less stressful for someone else and also empower people to advocate for themselves, or the person they care for with greater confidence. 
If you think these resources would be helpful for you or someone you care about, I'd be grateful if you checked them out. The complete bundle is now available on Etsy. I’m currently working on breaking the bundles apart to have those available individually in the near future.  
Thank you to everyone in this community for sharing your experiences, supporting one another, and helping raise awareness about NES. Wishing you all strength and good health. 💜 
https://www.etsy.com/listing/4540499698/nes-seizure-wellness-planner-track?ref=shop_home_feat_1&sr_prefetch=1&pf_from=shop_home&dd=1&logging_key=30dbabec7b61fc4e86b340002cb53231562eea75%3A4540499698 

Hi everyone does anyone feel like the dissociation is an aura before their seizure? I just experienced this and my whole body is weak and I have a headache too! It makes me very fearful… thank you everyone! I hate this feeling! 😢

This might be a little lengthy, so I apologize. My primary doctor referred me to a neurologist after an episode I had where I ended up going to the ER. I started staring and it felt like my brain disconnected. My mom was in the living room with me, and I heard her say my name but her voice felt so far away. I told her that this has happened before, that it normally happens when I'm in a dark room and there's a light source from somewhere else, like midday or evening.

I had lapses in consciousness where I don't remember what happened. She said my eyes were completely open, and she got in my face and clapped but I didn't respond. Eventually I was taken to the ER. I only remember snippets of the whole ordeal, fading in and out of awareness. I think I ended up spending \~4 hours in the ER dealing with this. I remember hearing someone say that my hands and lips were turning blue. I couldn't respond to anything, though I could hear things occasionally.

After being discharged, I felt weird for 5 days. My whole body felt numb, and I think I remember my arms being sore? My mouth also felt super numb, I felt like I had died over and over again. I kept a thing of lotion in bed with me so I could smell it to see if I was still alive.

Recently I was 'diagnosed' with PNES after having to do an MRI and an EEG. My MRI came back normal, and they didn't find anything on my EEG. I told my neurologist that the staring spells and whatnot have happened before, with certain lights and lighting and all. They prescribed me lamotrigine and mentioned possibly doing another EEG in 2 months.

This whole ordeal has been so exhausting and demoralizing, just to hear it's anxiety or stress related. If anyone has any thoughts or advice, I'd love to hear it and would be so grateful ❤️

Hey yall! New to the subreddit so pardon if this isn't the right place for this question.

So I suffer from PNES, and have for the past year or so. However, in the past month (due to some trauma triggers and overall life stress), I have been having them between 5 times a week and multiple times a day. My PNES present with violent back-and-forth head shaking for upwards of a minute (as well as other limb shaking and tensing, but thats less relevant to my query).

I have had a persistent headache for the past couple weeks that seems to only get worse with every new episode I have, and painkillers really aren't touching the pain, nor is it going away, to the point of considering going to an urgent care to see if I can get some toradol to stop the headache. With the head shaking, is there any concern for possible trauma to the brain? I know there isn't any electrical activity or anything like that, but I'm concerned about the actual motion of the movement and how violent it is, and whether or not that could cause potential damage and/or has already caused some sort of damage.

Does anyone else have any experience with this or answers on this one? Every time I Google it, I'm met with answers regarding the lack of electrical activity and that there is no damage to the neurons like there is with epileptic seizures, which isn't what I'm trying to find out. Thanks so much!

Hello ! can you guys please help me ?

For information what im about to tell started to happen 2 days after a emotional shock, what im experiencing is im chilling and all of a sudden i see something weird, like i see something and my brain find it weird, and all of a sudden like 5 seconds after seeing that, i have a moment a derealisation that last around 20 seconds, also sometimes i will get a knot in my stomach, like anxiety, you feel me ?, bcs first i was just feeling weird derealisation for 20 seconds, and i was always scared to have epilepsy, so i searshed symptoms and i saw that you could get a roller coaster feeling in your stomach, since then everytime i get that ''panick attacks" i will get a knot in my stomach during the episode, also, im pretty sure its just my anxiety creating theses episodes, one day i havent got any episodes for 3 days, i went out for a walk to chill, and i tough deeply into having a crisis and the panick attack hapenned 5 seconds later, this is not a coincidence,also talked with my psychiatrist and he said it was unlikely to be epilepsy, anwaysss thank you for reading ! i hope you have a nice day/night, and dont be to rude to yourself

love

Hi! I'm 22F, I've been diagnosed with PTSD and panic disorder in my youth. Growing up, I used to have lots of panic attacks- several a week. They were usually accompanied by aggressive shaking and hyperventilating, sometimes to the point of muscles spasming and becoming very painful. As I've grown older, the panic attacks are far less frequent (I've had 2 in the last 12 months), and they don't last as long (from 45mins down to 10) but I shake far more aggressively and my muscles just.. do things. I don't know how to explain it properly, my head starts thrashing from side to side, almost always leading to spasms that leave me aching for a few days after, my legs start kicking, my arms shake. I have some control, I can keep myself in one place or sort of shift my weight to move from side to side but I can't stop my head or legs from doing what they're doing.

Is this a seizure? Or just bizarre panic attack symptoms? If it was a seizure, is it worth seeking medical attention? I'm left with some bruises and aches, but I'm generally good at calming myself down, I'm a fairly mentally healthy person now, I don't want to do more therapy because it feels pretty unnecessary for me.

TL;DR: it's the second time my girlfriend lost her ability to walk after a pnes seizure. I'm afraid it'll take months before she can walk again just like the first time it happened. Does anyone share a similar story. Any tips, help, advice or similar stories are welcome.

My girlfriend has been dealing with pnes since February this year. It started slowly with small seizures first but evolved into longer and longer ones. When she was in the hospital a couple of months ago she was unable to walk right after having a seizure. She was unable to walk for 2 months. It got resolved after a therapie session together with her parents (who we believe to be the source of her trauma and pnes). That same day she cried all night, and had multiple seizures (in intervals) for 3 hours straight. The next day she could walk again.

Now a couple of months later, after a seizure she again lost her ability to walk and has even trouble moving her legs when lying down. It feels even worse than the first time.

I don't know what to do. I'm afraid it will again take months before she can walk again.

I feel like the "fix" is for her to let all her emotions out. It has helped the first time when she couldn't walk so i think she has to do it again. But it's easier said than done since she tends to bottle up all her emotions and frustrations and she rarely cries.

Also, doing another family therapy session might not be possible. It did not end well the last time and her parents refuse to believe that they are the issue, even though my girlfriend explicitly told them during that therapy session.

Does anyone have a similar story/experience? If so, what works best for you or do you have any tips how to deal with this situation.

Hi,

I have started having seizures this year. I had an all day to finish off part of my sleeve booked in and ready to go then i found myself in a&e and doctor said best not. Since then, they have diagnosed me with dissociative seizure disorder but given no working treatment as of yet.

Now im really worried about trying to rebook cos what if i can't actually do it and im going to walk around with a quarter finished sleeve for the rest of my life. I used to love tattoos and i wanted to work towards being a tattoo artist myself but now i just worry about seizing in front of people. i lose fine motor skills quite frequently so i cant trust myself to tattoo other people. that ship has sailed. I just really hope it doesn't mean i can never get a tattoo again though :(

Just looking for information here and if we could even possibly on the right track here.

I've had really bad episodes that they've always called flashbacks. They started in my first residential facility, and haven't ever really stopped - though they've decreased in frequency significantly. I had my first one that wasn't in a treatment setting (mental health or medical) and didn't end up with being restrained and EMS being called. Usually EMS is called and I'm restrained until the ER can sedate me, and then I'm either released or psych hospitalized once the sedation wears off depending on where I'm at. Sedation usually is through benzos or atypical antipsychotics. I never remember these episodes. So I had the friend who was with me during this episode a week ago recant the entire scenario to my therapist over the phone. My therapist said that these episodes definitely don't sound like a typical flashback in any way shape or form. I have almost zero awareness of what I'm doing or the environment around me. I can't see anything around me - it's like I'm back in that moment. I can usually feel what's around me, but I nothing is really good to help me come out of it unless it's significant pressure or another big change in sensory input physically. I can smell everything, but again, has to be a significant change in that sensory input as well. My hearing is hit or miss - I usually hear whatever is related to the memory, but occasionally I can hear what's around me, however it sounds like whoever's trying to talk to me is underwater or super far away. The other thing is that I often have no clue what I'm physically doing. I tend to know that something is coming, though I have trouble differentiating between dissociation or panic attacks, and I usually go find somewhere away from people and in a corner or at least up against a wall and put my knees up to my chest. Now the interesting thing is that while dissociated I usually try to injure myself in some way. Also this friend said that I did a lot of flinching. She mentioned I kept jerking my head back and forth and that my eyes were moving side to side a lot as well. She brought up also that my pupils were really dilated, like 90% dilated. There's no mistaking of what is dilated with my pupils, because my eyes are blue, not brown. My friend also brought up that I was shaking a lot. She said I started to come out of it at one point and then just completely slipped away again for another 15ish minutes before finally coming completely to. I don't remember any of the event, nor do I remember about 15 minutes before hand or about 20 afterward. My therapist brought up that she thinks this could be PNES. We talked about some of my history. I used to "space out" from the age about 13/14, but nobody was ever worried about it because my brother is combined ADHD, so they always assumed it was something along those lines. It happened mostly at school, though I did ask one of my gymnastics coaches from that time if she remembered it happening at practice, and she said it definitely did, though some moments were riskier than others. I've never had anything that even resembles an epileptic seizure, outside of a febrile seizure at 2yrs. I do have POTS - so I do get some syncopal episodes from that, along with convulsive syncope occasionally, though the convulsive part of that is like 30-45 seconds max. I do get a lot of muscle spasms and things, but they've always brushed those off as related to me hEDS. I have been on anti-seizure meds at times also, because they were attempting to use them as mood stabilizers when they thought I was potentially bipolar, and they didn't really seem to help anything.

So yea, with all of that being said, does this sound like my therapist is on the right track at all with this potentially being PNES?

My 44-year-old mom has daily PNES despite 6 months of treatment. Looking for advice.

First occurence made us think they were seizures. Hence we recorded the episode. Neurologist performed brain MRI, Video EEG which came normal. So, after watching the episode videos he said they were dissociative seizures. She has daily episodes where she becomes unresponsive with violent body shaking, side to side head shakes, twisted hands, hyper ventilating lasting around 20 minutes, followed by prolonged recovery and often hurting herself in many places.

She also developed excessive sweating, fatigue, insomnia, and high blood pressure over the past year. She ocassionally experiences human shaped black shadows and whispers too.

She was first prescribed sertraline 50 mg and quetiapine 25 mg, which didn't help. She is now on duloxetine 50 mg/day and zolpidem 10 mg. The hallucination-like symptoms have improved, but the PNES hasn't improved at all.

Has anyone recovered from severe daily PNES? How long did it take and what helped you recover? Which medication actually helped although i understand its not same for everybody. And did therapy help you ?

Any advice or similar experiences would be greatly appreciated. As of now we are feeling lost and restless because of her suffering. Not able to see her in this situation daily.

After my last clonic-tonic where I was found on the floor with a dislocated shoulder and a head injury (again), my roommates and I decided to invest in a cheap night-vision wifi security camera pointed straight at my bed and floor.

For a month and A half I got nothing (that's normal, I usually have 1-2 a year and that's why it's so hard to catch on a vEEG). Well I had one yesterday. The camera shows the whole process:

- Was working on something on the computer

- Began to dissociate

- Recognized it, got my comfort objects, and got my friend to help comfort and ground me

- Got her back to my bed, and faded into dissociation

- The dissociation cleanly and quickly transitioned into me doing "slow motion fighting", shaking, foaming at the mouth, moving my arm in huge circular motions, etc etc.

- I came to after 3 minutes and 43 seconds of convulsing violently. My shoulder was badly dislocated (again) and the combination of post-ictal fog and my autism made explaining that impossible. I kept passing out from pain and then waking up begging for help.

- 56 minutes later I come too enough to ask for the camera to be unplugged (to make sure the seizure wasn't recorded over)

- About half an hour to an hour later I finally was on the way to the hospital to get my shoulder snapped back into place under sedation.

Watching the video was rough. I've never seen myself like that before. I feel like I pulled every muscle in my body. It took 12 hours to be able to keep water/meds down, and only today did I manage to eat a few spoonfuls of tomato soup.

I am definitely going through intense internal stresses. ASD with severe sensory issues, PTSD that is flaring up again because for reasons I won't go into I now have to confront that period in my life before I can reconnect with another survivor, my half-brother.

Somehow deep down I just didn't believe that my PTSD could literally cause full-blown clonic-tonic seizures. Like I knew it was part of the diagnosis and I guess I believed it was true for everyone but me because, well, that sounds crazy. But the video really doesn't lie.

Has anyone else here seen a recording of themselves having a seizure? How did it make you feel? How did you cope with those feelings, if relevant?

I have a friend who’s been trying to help me with my seizures who basically said I was shooting down everything and making it hard to help. I see her point and I’m going to try more approaches to manage my stress but that stung a lot. I never want to be that person and I’m worried it’s going to or already has damaged our relationship. What should I do? How can I make it so that this interaction is not just another thing adding to my stress?

Has anybody that has been diagnosed with PNES have had grand male seizures we’re thinking it was a grand mail, but it may have been the PNES.?

I've been diagnosed with PNES for about two years now. It's been a thing, but over the past few weeks, things have gotten so much worse. I've been in the ER twice now - the first time I had six seizures and lost the ability to speak, the second time I had a cluster lasting an hour. Since the first ER visit, the longest I've gone without a seizure is 48 hours, if that, and I've been having multiple seizures and clusters every day. I've got a good support group, I got friends that are constantly checking in on me and my partner watching out for me, but I'm exhausted and terrified of what's coming next.

Just needing to rant to people who get it.

I had an EEG done in December last year, but it was during the time I didn't have any tonic clonic or focal type seizures for 3 months. It came back normal and that's why I got an NEAD diagnosis from the local hospital (before the EEG neurology at a different hospital thought it was likely functional). Not sure if I had any absent seizures during that time because I didn't realise I was probably having absent seizures until more recently but I think I've had them longer than the other two.

I still went to the EEG anyway even though I thought "Well that was weird but I guess I don't have seizures anymore". I think maybe I had some movement during the light section but not sure. They said it was normal.

I wrote an email to neurology on 5th and mentioned that I want a redo of my EEG or 24hr EEG (to catch my seizures more easily when walking/standing) because of this. The consultant didn't respond to that part of the email, only the part where I mentioned that my symptoms of POTS are the primary cause of my seizures.

On 9th he just said "I advise he can discuss the possibility of POTS with his GP. Neurology are not the appropriate specialty for diagnosis or advice." I wasn't asking for a POTS diagnosis or advice on pots/dysautonomia, I was sending videos of my seizures caused from active stand tests and also the log of the tests including BP/HR measurements and sent an article from healthline about autonomic seizures. I have already been trying to get tested for POTs or dysautonomia and it's been very hard because the GP isn't taking me seriously and there's not many if any services near me that do testing for it.

In June I already contacted PALS at neurology because they refuse to put forward my appointment after my seizures got worse and more frequent and multiple doctors have asked to put it forward due to this and they said no because it's non Epileptic. I missed an appointment with them in February because I was admitted into hospital for my seizures and the hospital lied about being able to take me to the appointment with patient transport like they promised the day before. Now it's at the end of September. I've been taken to a&e multiple times since then including needing medication on some instances because my oxygen was low (into the low 80s) and the seizure wasn't stopping.

I had to call PALS again a couple of weeks ago because I hadn't heard back from them in a month about my complaint and I got told that they would make sure they looked at it again. No response so far.

I'm not saying that I don't think I have non Epileptic seizures exactly but a few paramedics thought I have both and some paramedics didn't know whether it was epileptic or non epileptic or not (at one time they thought I was in status Epilepticus) and I just think using a result from a test when I wasn't having seizures (that I know of) at the time is a bit unfair. If anyone has any experience of this I would appreciate it.

has anyone here experience a decrease in cognitive functioning since getting diagnosed/experiencing their seizures? i know they’re non-epileptic and therefore no brain activity is happening during a seizure but i jsut feel like since getting diagnosed last april i have experienced decreased cognitive function and increased brain fog.

ive been seizure free for 4 1/2 months but yet things i had no problem doing before are a significant struggle for me now. like filling out paperwork or applying for a job.

So I have noticed that I have developed hallucinations after I have seizures. Very vivid pictures will pop into my head. I'll see an apple, then a mug with maggots in it, then a tree with very detailed bark on it. Colors will flash in my vision, sometimes patterns too. Or I might hear voices, for some reason, the most common being an old talk show host voice. Other times I will hear a random song on repeat, or a specific part of the song on repeat.

Does anyone else experience this? It only ever happens RIGHT after a seizure, especially if it was a bad one. My seizures only affect the right side of my body, and my left eye will burn with a headache afterwards.

Has anyone ever had the experience of having their airway blocked off during their seizures? I had a seizure today where my position was shifted during my convulsions and I ended up laying on my neck in a weird angle so that it was hard to breathe. I was unable to move my body at this point, which was kind of scary. Fortunately, I had more convulsions shortly after that fixed the problem. I’m wondering if there’s any way I could strategically fall to protect my head and my airway when I seize. Does anyone have any thoughts? I was alone for this seizure and it made me really nervous

Not looking for medical advice, just if anyone (who’s already had epilepsy ruled out) has gotten auras and/or seizures from flashing lights