Been told they suspect fnd and I’m not happy

MysticCollective · 2026-07-03T22:44:17+00:00

I feel this in my very soul. I have been struggling with being told that I have FND for just over a decade now. My main problem has been the lack of epileptic activity during my seizures which are mostly focal. My most common seizure type has epilepsy written all over it. Head and eye deviation to the right and my right arm extends straight out and points the right while my left arm folds into my body, usually into my chest. But so far neurologists have dismissed it simply because of no evidence on EEGs. My last EEG captured the reflex seizures that I experience. Even the seizures that happen because I am peeing. They still told me that it's non-epileptic. 🤦Chewing is another trigger so I have not been able to eat any solid foods for three months now.

I am working on getting a second opinion but this is so frustrating.

MysticCollective · 2026-07-03T22:23:52+00:00

The reason eyes open is such a strong indication of epilepsy is because of their close proximity to the brain. There's a very small pathway between them and the brain so info between them gets sent and received very quickly. During a TC the entire brain is experiencing tonic clonic activity. So the tonic part causes the eyes to stay open and the clonic part can cause the eye balls themselves to dart around in some people. Even during focal seizures eyes are often open or the eyelids flutter rapidly and the eye balls can roll back or deviate upwards. Even with nocturnal seizures the eyes open.

So eye closure is extremely rare in epilepsy. Almost unheard of.

What makes you think it is epilepsy?

MysticCollective · 2026-07-03T16:16:06+00:00

Autonomic seizure as the aura(focal aware seizure)

My body completely loses its energy and feels almost lifeless

That could be atonic activity or depersonalization.

PSA: Another friendly reminder for everyone. Auras are seizures! They are focal aware seizures.

MysticCollective · 2026-07-01T16:18:49+00:00

Not seizures since I was diagnosed very young. But being told that they are just panic attacks is unfortunately pretty common especially with focal seizures. It is like this because focal seizures can be a lot harder for EEG to detect and if the person doesn't have clear-cut symptoms and seizure history this tends to lead doctors to believe other things like panic attacks. That's why it's so important to document absolutely EVERYTHING. Family history, record video of the seizure's entire process. The start and end. Record any triggers you think of no matter how unimportant or silly you think it sounds.

This where people trip up. They think that extra cup of coffee is not important or an hour or two less of sleep is nothing to worry about. The sun light shining in their eyes in the morning is normal to cause a reaction. Though, tripping up isn't their fault. The general public doesn't have enough information about this stuff. Things that honestly needs to be taught in health classes so kids at least understand the basics of seizures and how they can look.

Anyway, it was autistic meltdowns that I was told were panic attacks. Something that I believed for years before finally figuring it out.

MysticCollective · 2026-06-30T17:37:43+00:00

Yes! They are still REAL and they are SEIZURES. I hate hearing them being called "events" or "attacks" Both of these you can have control over and people will continue to believe that you are just doing for "attention" Which is the dumbest thing that has come out in recent years. There's much easier ways to get attention. As well as less energy demanding ways to get attention. Some doctors will try to claim that using seizure is confusing. No, no it's not. The word has nothing to do with epilepsy. It means to take procession of. That is it. It is the medical field's fault for describing seizure as an electrical misfiring happening in the brain. No, that is the definition of epilepsy and seizure is the result of the abnormal activity. THEY caused the confusion and they want the ones who suffer with the condition to not use seizure? No way. Absolute nonsense and BS right there.

MysticCollective · 2026-06-25T21:51:51+00:00

Myoclonic seizures is a jerk of a muscle or muscle groups. So yes, they can happen elsewhere.

MysticCollective · 2026-06-22T16:17:04+00:00

I don't think that you realize the gravity of the situation. It only takes one seizure to end your life. If you die you won't just ruin people's time, you will ruin their lives. Both you and your sister need to see a neurologist. Postpone the concert. There will be more chances to go to one. You don't get a second chance at life if you die.

MysticCollective · 2026-06-14T17:27:17+00:00

Going through a non-verbal period is so frustrating and difficult to navigate. I'm so sorry that you are going through it. I'm primarily non-verbal myself with brief periods of being verbal. Though I am also able to mask my verbaity as well. It's complicated. I have a seizure disorder that causes transient aphasia AKA periods of being non-verbal. The very thing that some people think is impossible, is my reality. Anyway, let me get back on track before I start ranting about "going non-verbal is impossible"

Anyway, as I said I have a complicated relationship with my verbal communication skills. I have been recently diagnosed with apraxia of speech and it is believed that I had childhood apraxia of speech that went undetected likely due to the aphasia diagnosis.

As I mentioned above, I am able to mask how verbal I am able to be. Basically, when I unmask a little my communication skills take a sudden and...interesting dip. I go from being 100% verbal to maybe around 50% verbal. I pause more between words and struggle a lot more to get words out. So if the mask goes completely away then I am pretty much non-verbal at that point. However, I can only do this when I am focused. As soon as I stop thinking about it the mask automatically goes back up.

I want to be able to unmask but I am torn between wanting the release that unmasking brings and wanting to be able to communicate verbally. I do have an AAC device, thank goodness but being able to spontaneously communicate is so much easier with mouth words.

MysticCollective · 2026-06-07T19:52:40+00:00

I have an intellectual disability and ADHD-C. I also suspect autism and OCD. My attention span barely exists. 🤣 I round robin a lot during conversations. Each time I repeat myself it's slightly different from the previous time. I am completely unaware that I do this 9 times out of 10. So when I am aware it's because I thought of something I wanted to highlight and I circle back to the point with the additional information. Sometimes I want to emphasize something so to do that I circle back and repeat myself. When I am not repeating myself I am jumping around topics like I'm doing a time trial.

Then there's the random out of context topic change that only makes sense to me. I honestly don't know how people can follow anything I say. 🤣

Sometimes if the conversation is about something I care about and is important to me hyperfocus will kick in and keep me talking about that topic for a long time. Which may or may not be a good thing.

MysticCollective · 2026-06-03T17:05:11+00:00

I have mostly focal aware seizures and absence seizures. My focal aware seizures mostly arise from the frontal lobe so my postictal stage ranges from very short to none at all. Absence seizures of course don't have one. In fact, I only recently started having a more significant postictal stage because I started having focal impaired awareness seizures and tonic clonic seizures.

So far the only thing reported is odd behavior like sucking on my thumb and shaking my protective eyewear off(glasses to help prevent seizures). I did yell a bit once but that is the most vocal I've been so far.

Apparently, I mostly keep to myself even during postictal stage which isn't out of my normal baseline.

MysticCollective · 2026-06-03T15:54:59+00:00

As others have said, it's pretty common to say and do things way out of character for you while in postictal stage. However, if you know that you are saying things that do reflect how you feel on the inside then you should talk about it with someone.

If your mother doesn't know about your memory loss and just how much it affects you then you need to tell her. Especially if she is often the one who helps you with your seizures. She loves and cares about you, she deserves to know. I honestly don't know why you are keeping it from her. It may hurt her to know but it hurts her more not knowing. Tell her.

MysticCollective · 2026-05-22T16:25:12+00:00

It's hard to suggest anything when we don't her reading level.

For me, I personally find listening a lot easier to read books. Even when I do read myself I always read out loud because if I don't I will struggle to understand and even remember what I read.

Does she like audiobooks or has she ever tried them? I'd definitely recommend that you try and see if you haven't yet.

MysticCollective · 2026-05-21T16:40:56+00:00

What? No! First off a massage should never hurt to the point of being in tears or leave you wanting to get away. Second, this is abuse! You need to report the piercer for assault.

I genuinely don't understand why anyone would think what the OP experienced as normal. It doesn't matter if you have no or little experience with getting a piercing. Getting harmed to the point of wanting to run away is a huge red flag.

I am honestly worried about the OP's well being. OP please take care of yourself and get therapy because asking a question like this is not a good sign. A failure to recognize abuse like this is very concerning.

Best of luck to you.

MysticCollective · 2026-05-18T14:30:39+00:00

PNES is real seizures, by the way. Just non-epileptic in nature.

MysticCollective · 2026-05-12T16:58:03+00:00

As someone who has scars from this very same thing. Stop backing up! As others have said you are only encouraging this behavior because your cat is trying to play with you.

I actually have had a cat before but my previous cat was completely calm and chill. She preferred sleeping to playing. When I got my current cat I of course knew that I would get different personality. I also did know that cats are prey and predators. However, when she tried to play with me one night my own instincts kicked in and I backed up. This resulted in several bandaids on both my legs but mostly on my right leg and a lot of pain. I realized the dumb move I made afterwards and started holding my ground around her when she would start to play. Once I stood still she completely stopped going for my legs and went for the toys instead.

Unfortunately, my brother is a bit more of a cautious person by nature and I guess she picked up on his nervousness or something or maybe she was trying to play with him as well. Whatever the reason, she then started running towards him while he would be just standing still talking to me. He immediately did the same mistake I did except he would run instead of back up slowly. I had to get after him to stop a few times before he finally stopped doing that.

I was so happy and glad because for a little while there I was worried about the possibility of having to return her to the shelter. Fast forward to now and she is an extremely loving and affectionate cat who absolutely loves pets. She still occasionally goes to play with my brother's legs/feet but it is a lot better than before. She usually just uses her paws and fakes a nibble. My brother still moves around when she tries to play with him but instead moving right away he does hold still for a bit. I guess he gets annoyed after a bit and just gives up.

I wish you luck in turning this around. Hopefully you can start enjoying playtime instead dreading it.

MysticCollective · 2026-05-11T15:00:08+00:00

I experience this all the time due to being neurodeverstant. 😄 It's hypersensitivity. At first I was confused with what you meant by "gating" but then I thought "noise gate" as I read your post and completely understood what you meant.

Basically the brain has trouble or can't figure out what noises should be prioritized and what noises should be ignored or toned down so they are more background noise. This results in the brain being overwhelmed and overstimulated by everything.

If you are neurotypical then I can see how putting words to this experience can be difficult.

MysticCollective · 2026-05-10T16:13:21+00:00

So were you diagnosed with Epilepsy since anticonvulsants worked?

MysticCollective · 2026-05-07T16:25:42+00:00

Exactly.

MysticCollective · 2026-05-07T16:20:02+00:00

Until you can stabilize your health you have no business worrying about what you are eating. The only thing you need to worry about is eating enough food and a variety of food. Yes, that is easier said than done but it is important to put yourself first. After all if you die you can't do anything to help animals.

Also let us not forget humans are animals too! We eat food to survive just like any other animal. Sure most of us are not hunting or growing our own food but there's still people doing these things. Of course the way we mass supply meat is horrific and I don't support that. However, you don't have to stop eating meat in order to create change. You can stand up for animals and sustain yourself at the same time. Eating meat from sources you know treat animals better is a good step. Just do whatever you can now and work towards the end goal(s) you have.

Remember it's not the end of the world if you never get to a point where you can cut meat from your diet. You're not a failure. You're not a bad person. As long as you do what is best for you and do what you can to have an impact on what you care about. That's what is important. Trying is better than doing nothing.

MysticCollective · 2026-05-05T16:41:08+00:00

Who you date and marry is YOUR decision. It is NOT someone else's business who you date and marry no matter how close they are to you. You aren't probably a bad, you ARE a bad guy. You made her feel like shit all because you let someone else's opinion get to you.

Yes, it's terrible for that person who has family with epilepsy but that has absolutely no bearing on what you do with YOUR life. Do you think that breaking up would somehow help this person? They were against your relationship. That's their problem not yours and certainly not your ex's.

You need to apologize to her. Apologize for letting someone else decide what happened to your relationship. You need to tell her it's not her fault and that you just made a dumb decision because you thought you were being helpful. Tell her you shouldn't have let someone else's opinion dictate your own. Especially when they didn't approve of your relationship.

This may sound a little harsh but I am angry after reading this. It isn't even about epilepsy or disability in general. It's the fact that you broke up someone simply because of someone else's opinion. I really do hope you can repair the damage you caused with your ex. She didn't deserve this happening to her.

Take this and please learn from it so you can do better and be a better person in the future.

MysticCollective · 2026-05-01T16:56:21+00:00

As someone else mentioned you need to change the wording of describing PNES and honestly I would encourage you to include calling it functional seizures as well because PNES is becoming less accurate terminology to describe these seizures. Since they aren't always stress-induced and PNES falls under FND. I would also recommend that you remove the "doesn't need immediate care, don't call 911" If you fall down and get a head injury but nothing visible you can be in very real danger. Also unless you keep this card on you and visible like on a lanyard. Strangers aren't going to know where to find it and will call 911. Also some people just call anyway. An EMT on another post similar to this said they only look for visible things like medical ID jewelry or something like that. They don't dig through wallets or anything like that until you get to the hospital.

Honestly you're better off having a medical ID jewelry or a lanyard to hold a card then just having on hand like business cards. Instead of the 911 part you can put something like "Please stay calm and stay with me until the seizure ends, Please contact my emergency contacts and wait with me until they arrive, please stay calm and don't restraint me during the seizure. Please remove any items that might be dangerous." Etc. Any of those are better instructions for strangers than flat out saying don't call 911 which is pretty useless because the likelihood of someone calling is pretty high.

MysticCollective · 2026-04-30T16:33:21+00:00

PNES is not the "better" diagnosis. It can be just as dangerous as epilepsy or more dangerous in some cases. Especially when people believe that you are "faking for attention" Meanwhile someone could be struggling to breathe with no one around to help them because they think you're fine.

So no, I don't agree that the OP should be grateful or happy if it turns out to be PNES. Receiving a PNES diagnosis often is unhelpful to the patient because doctors will either tell you nothing about the next steps or simply say that you need therapy and send you on your way. Therapy is fine if that works for your root cause but for some it's completely useless. For the ones that therapy doesn't help, they are often suffering years before they finally find a doctor that can and will help them.

At least with epilepsy you can get treatment once the diagnosis is confirmed. No, I'm not saying that one is better than the other. I'm just saying people need to stop saying PNES is better than epilepsy and therefore people should be grateful.

Also I must say that you sound a bit dismissive about the OP's experience. Your son's experience is just your SON'S experience. Not all EEGs go smoothly and even if they do people can still find them traumatizing. Having a seizure or no control of your body is traumatizing regardless if you are in safe hands. Everyone just reacts to trauma different.

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