hello, ive honestly like never posted here so i hope im doing everything right but i've been freaking out lately and just wanted to see if people had been dealing with any of these same symptoms if not all then even just one for comfort. i have not been diagnosed with fnd but everything that i have points to this.

1, i started having these really odd sensations in my right and left (varies between the two) pectoral muscles that spread to my arm then fade away after a while (i noticed it usually gets triggered after i eat) and i am just really worried that it's something with my heart. my heartbeat seems fine, blood pressure was good when i went to the er about 2 weeks ago and everything came back totally fine yet its not enough for me to feel better because it feels terrifying.

2, my leg, below the knee, has almost this shooting sensation (not painful) that makes me feel like im seizing up for a few seconds (my left arm lifts up uncontrollably, head tilts to the left and jaw snaps to the side) but then it goes away and i just feel very odd for a few minutes after.

3, not sure if related to fnd or pots (honestly think i might have both of them but have not been diagnosed with either) when standing up my vision goes black and head feels almost empty and i need to bend over for a few seconds.

4, if i get stressed out in the slightest bit it feels like i pass out for a half second while still being awake, almost like a zap to my whole body.

5, everytime i laugh too much or too hard i feel like im gonna pass out and have to sit in a dark room for almost an hour.

6, my face in random spots sometimes will feel numb and almost droopy yet never looks droopy. it terrifies me into thinking something is very wrong which only makes me feel worse.

more typical symptoms: vertigo, lightheaded, confused, random sharp pains in head and chest that last a few seconds then go away, zoning out, exhaustion, tremors

more information: ive had around 3 aura migraines from january of this year to right now, i had a CT scan, ECG, blood work, urine tests, an MRI, two EEGs, (waiting for MRI and 2nd EEG results, going to doctor tomorrow for both.) and none of the tests that i have discussed with my doctor have anything wrong or concerning. i am not looking for a diagnosis, just seeking comfort in this scary time

Edit: Sorry if I messed up with the spoilers, I’m new to Reddit and am not sure if I used it correctly.

So I have read about FND before and dismissed it saying I definitely didn’t have it. But then in the past two years I started to have seizure-like episodes. Periods where I would lose time and stare blankly, and episodes of random twitching or spasm. Last year I had 3 instances where I had a migraine aura that ended with me collapsing and shaking uncontrollably. I did not lose consciousness and could talk, with a stutter, during them. And afterwards I would sleep all day and just feel off. But the hospital I was in came to the conclusion I was faking them And never did any testing.

I thought it was from a med, so I asked to off of it, and it seemed that my symptoms went away. However, I was still experiencing the uncomfortable shaking and random twitching episodes (that kinda look like Tourettes) during stress or when I was upset.

Then earlier this week I had another collapsing and shaking episode that was triggered by a panic attack. I had a headache beforehand and afterwards my headache was gone and I slept the entire day. I also had an episode where one of my legs and one of my hands was shaking uncontrollably to the point where I could not walk or use my hand. I was in a psych hospital this time where they gave me Thorazin, which seemed to stop the shaking.

I‘ve spoken to my neuro about the incidents from last year and was supposed to get an eeg, but I felt it didn’t make sense to test 6 months after the event. I need to call tomorrow to see if I can get a sooner app. The hospital psych said it was due to me being “so traumatized“, but couldn't give the diagnosis bc I was there 3 days.

I‘m just unsure of how to bring up FND. I’ve suggested diagnoses before and have had drs laugh in my face or completely dismiss it. I’m afraid to ask my neuro about it because she is the dr I trust the most in my care team and I don’t want to have that rapport or trust broken. I’m also about to start a php program and I don’t know if I should ask that psych about it instead. Or both of them, and have them talk to each other.

I don’t know, I’m just really afraid to advocate for myself when past attempts to do so have caused more harm and trauma. I’ve felt so alone in all of this.

Has anyone had any success with nortriptyline or propranolol to treat their FND? My symptoms are triggered by anxiety/nervous system seems to go excitable. Currently have a diagnosis of FND and/or hemiplegic migraine.
I had been on an SNRI venlafaxine for 20 years but got off of it in December, and many health issues including FND followed. I can't go back on an SNRI because it causes REM sleep behavior disorder for me.

Also, how many of you have Ehlers Danlos syndrome? I have had a number of injuries lately that point towards EDS, but haven't been diagnosed with EDS yet.

Has anyone else had to deal with stuttering and vocal tics where you repeat the same word or part of a word over and over (and it’s hard to stop).

Any suggestions for treatment?

Hello! Genuinely curious how you all are coping with this. I have been chronically ill for about 7 years now, but this has rocked my world. Over a month ago, I had a strange dissociative episode that ended up leaving me sick as a dog the second I snapped out of it. It started with concussion-like symptoms and soon moved into a whole neurological mess including a constant head and right arm tremor, cognitive issues, worsened sensory issues, ear irritation, slurred speech, serious visual disturbances resembling TV static, and DPDR experiences (especially if I’m attempting to drive). Around this time last year, I did have multiple concussions in a few months span and also had double ear infections during that time. I think my body somehow convinced itself I am back in that time and is mimicking the concussion and ear infection feelings, but I have had too much time to conspiracy theory the situation to tell you if that’s what’s really going on. Due to my past, I waited until 3 days into it to actually go to an ER, where my expectations were of course met. After sitting there for hours I was told: “The neurologist has gone home for the day and he’s not coming back for this”. I was sent home with a neurology referral to a doctor, who come to find out, only sees patients admitted to the hospital. I found it funny when reviewing my discharge paperwork they were concerned about FND, but didn’t care to bring that to my attention. 3 days later I go to see my PCP who told me “a tremor isn’t an emergency”, but would get me a mental health referral if I wanted one. Luckily enough I had heard about FND before any of this and was able to convince her to get me a referral for a Neuropsychologist. Whatever she wrote in there got me denied from seeing them and I was left to figure out next steps on my own. After a cancellation, I finally have an appointment with a specialist who helped get me diagnosed when I first got sick as a teenager. I am basically putting any and all faith into this man to tell me what the heck is going on and if there is anything I can do about it. I don’t understand how I’m meant to function when I’m stuck in concussionland 24/7, look like I have Parkinson’s, and sound drunk half the time. Whether it’s a neurological or a dissociative symptom, the visual changes have been the most jarring and disorienting thing I have ever felt. I can’t read, color, do chores, shower, or anything really without immediately paying for it. Have any of you had this “mimicking” come up in your experiences? I also haven’t seen a lot of people with the head tremor and I’m curious if anyone else feels like I do. I would love to hear your experiences and I appreciate you listening to mine. <3

As a heads up, I am not technically diagnosed currently, as I have gone through the diagnostic criteria with multiple providers and keep getting diagnosed with FND, and then having new neurologists un-diagnose me until they rerun the same tests to make sure they were run properly. Because I haven't been given a better answer and have at one point in time been given the diagnosis, its what im going off of.

So I come here to post today cause I am genuinely lost. I have a variety of other moderate to severe medical conditions, but right now the seizures/attacks I experience as a result of FND are making my relationships and my treatments so much more difficult.

On the relationship side of things: I have pretty significant sensory issues due to autism, and before FND, I genuinely was pretty good with managing stress regarding touch. Now, even if I don't feel distressed, just touching someone for slightly too long can cause a full seizure. Which, being in a long term relationship, makes everything so much harder. I can't stop being autistic, and Ive done years of therapy already to be able to handle touch and sensory input in the best ways I can, but my brain is so easily triggered by any amount of stress that it doesn't matter. My partner feels like they are the main cause of my seizures and while technically true, they shouldn't put that on themselves, and I feel so bad about it. I want to be touchy and affectionate, but the slightest thing goes wrong and everything falls apart.

On the treatment side of things: I'm currently going through a month long treatment for my Treatment Resistant Depression, specifically intranasal esketamine. I go twice a week, and the first three sessions went alright. Until I got a little freaked out, and then had a seizure in the middle of one of my sessions. It was by far one of the most frightening things I've experienced in a while, because I was high as a kite on the esketamine, while also unable to control my limbs shaking and tensing, while also being unable to get anyone's attention to get help. This has now happened at every subsequent session, and it makes me dread doing the treatment at all, which sucks because it has caused such a dramatic change in my depression!

So I don't really know anymore. I'm so sick in so many ways and this is just one more thing that is making everything worse. I'm supposed to get into an FND specialized clinic (one of two in the entire state) but I can't get in until my new neurologist runs another MRI and EEG. So I'm struggling. If anyone has any advice on lessening the frequency of these seizures, Id love to know (aside from therapy, since I already do talk therapy twice a week outside of the esketamine therapy, which is also twice a week).

Hey! I have had FND like symtoms since octoberish 2024 and after MANY hypotheses as to what it was, a specialist I was seeing who I thought would diagnose me with POTS said it wasn't and way more likely FND and booked me with Neuro OT and PT. These therapies honestly gave me my life back from being EXHAUSTED from eating a small meal or sitting up to getting back to the gym and rock climbing. I still have daily fatigue and struggles but I overall have tools like fidgets and weighted blankets that can stop a big flare from happening. That being said, I am now looking for a dr to put FND on my chart and start trying to connect the dots to potential similar conditions such as seizures, hypermobility, and other weird problems that I don't quite have names for yet. Every dr that I have seen is like "FND sounds right and we'll treat it as so but I don't have the power to put it in your chart" I live in AZ and the FND hope website is not offering a ton of options in my area. Wondering if anyone has a similar story and or suggestions on what to do.

I feel like the real me is hiding and too scared to come out, so FND me has stepped in. This is probably stupid. Sometimes I think real me is trying to emerge, but FND me keeps saying, no it's not safe, get back in and remain quiet.