▲ 22 r/FND

Where FND comes from.

so far the research we have on why this happens is physiological and psychological.

(My knowledge as a medical student. )

Your limbic system dysfunction that is what causes it now the limbic system processes emotions, flight or fight, motivation, as well as memory and long term memory. Sensory Also regulating stress hormones and sleep hormones.

It’s made up of 5 main parts
Hippocampus, Hypothalamus, Amygdala, Cingulate Gyrus. Among Thalamus, among others)

Why it’s a neuropsychiatric disorder.

people with PTSD Trauma or psychological stresses or physiological stress I.e (viral infections injury or pain)

Have this because it can’t regulate it itself anymore due the stress it was put under, emotions disrupted can cause seizures not being able to regulate why ppl with mental health are more at risk but so are ppl with physiological stress.

Other illnesses caused by limbic system dysfunction and breakdown are, anxiety, PTSD, depression,Addiction, Alzheimers disease, schizophrenia, neuropsychiatric disorders all caused by this disfunction FND is the one that stands out as different that doesn’t share things in common other then the cause (as we know it be)

However it also is tied to epilepsy. Why I believe over 30% of ppl with FND have epilepsy to. (Known as temporal lobe epilepsy) extremely hard to see on an EEG. Nearly impossible they use a specialised epilepsy MRI and SEEG as the best diagnostic tool.
And limbic encephalitis often causing epilepsy limbic encephalitis causing inflammation brain

However FND is so under studied. I have my own opinions on FND firstly i believe they diagnose it way to freely a lot of ppl “have it” simply because they can label quick.

But regarding what FND is

The limbic system is a group of deep brain structures, WHILE they say FND is not electrical i believe it could potentially be electrical in some cases the thing is if FND is caused by the limbic system dysfunction as we know it be an EEG would never pick that up due how deep it is the brain.

If temporal lobe epilepsy (comes from the same place your limbic system) can not be detected on a standard EEG how can they expect this limbic system dysfunction expect to see it with FND as well?

The best diagnostic test for temporal lobe epilepsy is
SEEG A surgeon places tiny wire electrodes directly inside the brain to catch the deep limbic signals.

The second best is a specialised epilepsy MRI looks for scar tissue, shrunken areas hippocampal sclerosis or tiny birth differences in the limbic system causing the seizures

PET scan or SPECT They map blood flow or chemical activity to see which part of the brain is causing seizures in the limbic system or if it comes from other parts.

And VEM however this often detects normal activity.

Epilepsy’s Deep within the brain can not be detected on a standard EEG. Why could that not be the same with FND seeing as where it comes from?

Potentially a stimulus that we haven’t seen before.

FND cases are completely different from each person some are very alike I personally believe there’s a few different things going on, with this one big thing they are Labelling FND. I do believe some are driven under trauma however the markers are clear. Therapy and antidepressants will help. Cases where this doesn’t help need to be re looked at. But again I believe there’s multiple illnesses going on here ones we may not have a name for

This is my few as a medical student unfortunately not uncommon they do this with multiple diseases. Chronic, especially. It’s easier to call it one thing then to call it multiple and do the common symptoms so it can go under an umbrella term.

Just my opinion. What are your thoughts?

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u/Tizzles_ — 2 days ago
▲ 7 r/FND

FND can have biomarkers!

Tw talk of intubation/blood test results

FND is one of those disorders so misunderstood and that needs be researched while many have no biomarkers and have million symptoms some may have it other way around. The brain works in mysterious ways.

Therapy doesn’t always work because while most are psychological some aren’t some can be physiologically but what is the question how can one go from nothing healthy normal tests to being intubated needing the ICU?

ppl often say FND isn’t that dangerous well it can be. You can have abnormal tests.

Sometimes therapy doesn’t work for FND.

Something people don’t mention or not always mentioned

People don’t talk about how it can cause intubation, can cause IO’s can cause life threatening complications. It’s a spectrum everyone is different.

Biomarkers, abnormal blood tests when there should not be. FND should be a limbic system dysfunction not a structural problem yet can cause very real very serious complications that can lead to very life threatening complications.

I did a 8 month master course in FND at university we learnt the cause it’s your limbic system, FND it’s a spectrum disorder it’s not one size fits all it’s to each individual while most are told it’s completely “safe” take apart from the danger from falls due to the seizure associated with FND and tremors.

FND is still incredibly miss understood, oh how dangerous it can be, what are the limits what truthful causes it it’s it’s research. As most chronic illness most complex illnesses. We get put in this bracket of “complex cases”

There’s many more things to understand about the brain and FND and what truthfully causes it, and I don’t think they will ever know due it’s not the same reason for everyone while it’s a neurological disorder Bought on by psychological trauma or physiological markers some people just “develop it” it seems incredibly unlikely, how can someone just develop something they met no criteria for. Including a repressed trauma disorder, FND seems to be on a skyrocket on diagnosis’s if they can’t find something wrong on blood tests or imaging it’s FND.

Yet if you have BIomarkers it’s also FND? Without any functional testing? They no longer do functional tests I.e Hoovers sign or FMRI that actually can gain a correct diagnosis of FND. A FMRI can detect FND.

This may be a rant but as a medical student with a “suspected diagnosis of complex FND with no psychiatric or psychological hXD” is what I’ve been told.

(I’m on a wait list to see a neurologist fyi) on anti seizure meds that helping thankfully 😅 but I just want to share that FND can be very different to not sharing biomarkers. I literally only have 1 symptom and have a million biomarkers.

u/Tizzles_ — 11 days ago
▲ 22 r/FND

FND THE “New epilepsy” posts

With all these posts of FND being the “new epilepsy” and people with FND saying it’s not rightfully so it’s not while both are cause seizures and both are neurological conditions they are not the same condition it’s like saying Parkinson’s and motor neurone disease are the same disease both are neurological progressive neurodegenerative conditions but they effect different aspects and work completely differently same with epilepsy and functional neurological disorder.

(Firstly I’d like to say I have some medical training I’m in paramed (2nd year) I have training on Some neurological disorders including FND) and there’s always more to learn in the medical field as is especially with FND it’s not understood as is.

Now, with epilepsy there’s SUDEP -Sudden Unexpected Death in Epilepsy) and that’s what peoples arguments are why epilepsy is inherently more dangerous which yes, that’s why it’s more dangerous in that sense.

With epilepsy heavily associated is brain damage due to lack of oxygen and the electrical brain abnormalities.

FND is seen as being dangerous for primarily fall risks and head injuries during seizures, but FND stand alone is not dangerous. Is what most doctors will tell you.

FND is individualised like epilepsy. Like any condition. Some more than others. But the brain is very individualised, so it depends on that person. FND can be life threatening.

I myself have seizures I’d like to preference I’m NOT FORMALLY diagnosed with FND! They suspect I have it (from the first hospital I went to)

So i recently developed seizures 2 months ago nocturnal seizures, only out of sleep I have a normal life outside of sleep, my oxygen goes as low as into the 70%’s lowest 64% in the ICU 1-3 minutes seizures and can have multiple I have been intubated and had IO’s drilled into my bone what this was put out was FND due to a 4 minute EEG done with no spike shown I was on high amounts keppra and another anti seizure medication at the time. My CK after 13 hours came back 6,340, BGL post seizure 1.8 ketones 8.0 post seizure cyanosis post seizure prolactin levels elevated and lactate elevated, does this fit FND no but was it labeled it? Yes Bec there was no spike, Bec the mri was clear. For scaring, no tumor ect. EEG was clear minus beta wave however it was meant be a 90 minute EEG that turned out to be a 4 min EEG.

My heart rate is 240+ during my seizures, my BP 150/120 on average most was 170/130 I stop breathing during I go into a coma like state for 1-3 hours. Hr 30s-40s bp 80/60 on average

My more. server seizures was one where after a cluster of 3 seizures that were 2-3 minutes long I went into a 12 hour coma like state i stopped IV keppra earlier that day they could not wake me up pain triggers my brain was in a deep state of sleep. I woke up with amnesia I lost 24 hours and still can’t remember some memories of my past and that day. Brain damage who knows they never looked into it they blamed me being taken off keppra to fast. A resp rate of 6. On oxygen the entire time in the ICU.

And my most serious one seizure lasting 3 minutes 12 seconds my HR was 267 and went into SVT during my seizure.

Yet the FND specialist said he was not convinced I had it, psychologically cleared physiologically cleared. All by a FND specialist. So yes while FND is different for to epilepsy it’s different for everyone.

3 days prior I celebrated graduating my 2nd year of paramedic college, only to switch a medicine I was deathly allergic to and not be monitored it took one simple trigger. I had an allergic seizure and they never stopped. That’s all it took.

FND can be life threatening it’s individualised you can’t just say same thing for everyone.

I intent for this to be a learning point and I’m happy for everyone to help me learn I’ve only dealt with this 2 months so share your experience thoughts I’d be happy to hear to same if you have epilepsy.

We should be supportive of eachother NO MATTER WHAT ILLNESS WE HAVE NOT FIGHTING.

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u/Tizzles_ — 15 days ago

Not formally diagnosed with FND! Or epilepsy) yet awaiting urgent neurology

( Cross posted ) in R/epilepsy

Firstly on an anti seizure medication which thankfully I’m responding to well, less seizures clusters which if I had FND it wouldn’t work, GP is not convinced it’s FND at all in fact the neurologist basically said only marker I met was having seizures.

But they did 3 CK levels while I was in there 309CK within seconds which is a mild elevation from my level of 84, and it hits peak within 12-48 hours after the seizure.

Another 34 minutes after seizure 1,164 CK level

Today I got a call the CK level they did 13 hours after a seizure was 6,340 IM SORRY!!! My range is 84-129 normally..

6,340! What that’s emergency response level…

Another unlike FND thing is I do respond benzodiazepines and they do stop my seizures I’m awaiting an urgent neurologist appointment but the wait times can take up to 18 months! And they only happen in my sleep! Another not very FND common

When I say sleep I mean N2/N3 core and deep sleep not when I’m waking or just going to sleep. Not rem sleep.

So for now I’m relying on my meds to keeping from going into status epilepticus or continuous seizures as I do stop breathing, and my oxygen levels do drop significantly and when I was in hospital I had 5 icu admissions was very close to being intubated and on oxygen nearly every time, I have quite low oxygen in my blood, from an ABG after seizure shows 33.6% oxygen saturation and FHHb 65.6% Po2 at 24% theses aren’t great values especially during a seizure

Idk if I have FND or epilepsy yet but it’s all very confusing

I have tried the cbt and emdr while in hospital, and been assessed by a MH doctor who specifically specialised in FND he was not convinced I had it. And CBT was not beneficial I had no recollection of the events of the seizures I tried the common FND treatments and were unsuccessful in resolving seizures. He made no plans to continue it after 6 sessions it had no benefit.

Sorry for the rant but after the call today geez that was a shock!

Now my current anti seizure med has reduced continuous seizures a fair bit, i respond to benzodiazepines instantly. However I didn’t respond to keppra as well as others I will admit. When it was a iv.

Diazepam, Midazolam,stopped my seizures nearly immediately. When administered. I respond very well to benzodiazepines I then go into a coma like state a peace full state it’s like my brain goes into sleep mode they can not wake me with pain triggers for 2-12 hours my BP goes up to 198/94 and HR 201 the seizure my oxygen sat drops a lot I do have stopped breathing. Into the 80’s at the beginning into the 70’s (I believe ) in the coma state I don’t hear I don’t see I don’t dream and my HR drops into the 40s or 30s and my BP drops into 86/53 and has gone lower my oxygen levels start to stabilise after the benzo and seizures is stopped it can take around 40mins to 1 hour to get my saturation up to that 90% from 85% while in a coma like state during it I take 3-8 breaths a minute. While I’m in a seizure I often can’t breathe and I foam at the mouth every time. Quite tonic clonic like.

Once I wake up from them I have no stress abt the events I often have no clues I had a seizure at the start I didn’t i know the signs I have violent seizures I’ve broken bones, dislocated my shoulders and fingers and I bit my tongue ever time nearly and lips and checks! So on my then one occasion I’ve been foaming blood! Quite traumatic for anyone to see I can imagine!

Now I have no stress abt these seizures, when I wake up sure my muscles are sore but I have no memory of them but I had an IO’s drilled into my bone and didn’t wake up needles hundreds of times I have no stress after during or before these events it’s not a trigger to them

The trigger is sleep. And deep sleep.

It was caused by a serve allergic reaction to a medication, they kept giving me 4 doses!!! Until a nurse said hey that’s not right! And a doctor goes no that’s a seizure over an hour they left me I was swelling rashing and convulsing foaming at the mouth for over an hour my oxygen levels were critical it was only thanks to handover I’m alive.

And I only have a potential FND diagnosis because I had 1 EEG that showed no spike HOWEVER I was on a massive amount of IV keppra + another anti seizure med tablet and I was awake at the time of the seizure and it was induced my flashing lights and it was meant to be 90 minutes it stopped 4 minutes in, I was given diazepam 2 minutes in into my seizure and it still showed some abnormal brain waves just no massive spike yet it should have been been fully unmediated (minus the rescue med Bec i stopped breathing)

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u/Tizzles_ — 29 days ago

So got told I had “FND” but look epileptic

Firstly on an anti seizure medication which thankfully I’m responding to well, less seizures clusters which if I had FND it wouldn’t work, GP is not convinced it’s FND at all in fact the neurologist basically said only marker I met was having seizures.

But they did 3 CK levels while I was in there 309CK within seconds which is a mild elevation from my level of 84, and it hits peak within 12-48 hours after the seizure.

Another 34 minutes after seizure 1,164 CK level

Today I got a call the CK level they did 13 hours after a seizure was 6,340 IM SORRY!!! My range is 84-129 normally..

6,340! What that’s emergency response level…

Another unlike FND thing is I do respond benzodiazepines and they do stop my seizures I’m awaiting an urgent neurologist appointment but the wait times can take up to 18 months! And they only happen in my sleep! Another not very FND common

So for now I’m relying on my meds to keeping from going into status epilepticus or continuous seizures as I do stop breathing, and my oxygen levels do drop significantly and when I was in hospital I had 5 icu admissions was very close to being intubated and on oxygen nearly every time, I have quite low oxygen in my blood, from an ABG after seizure shows 33.6% oxygen saturation and FHHb 65.6% Po2 at 24% theses are great values especially during a seizure

Idk if I have FND or epilepsy yet but it’s all very confusing

I have tried the cbt and emdr why in hospital, and been assessed by a MH doctor who specifically specialised in FND he was not convinced I had it. And CBT was not beneficial I had no recollection of the events of the seizures I tried the common FND treatments and were unsuccessful in resolving seizures.

Sorry for the rant but after the call today geez that was a shock!

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u/Tizzles_ — 29 days ago
▲ 7 r/FND

Can you have FND at not even 2 years old? And out of deep sleep and it disappear for 15 odd years and show up again ?

So I was going through my medical history as a child as I have a very rare disease and my parents thankfully kept everything!!

And this is from when I was 18 months old similar not quite my tonic clonic like seizures. Where I stop breathing often. (This was NOT investigated) I’ve never been to a neurologist for any reason. Still awaiting one.

After more then a month in the hospital I have a potential diagnosis of FND over 180+ seizures after being given a medication, I never should of been given as it induced seizures and they continued and I now have FND. They they administered a benzodiazepine each time otherwise a seizures would continue for 3 -6 hours before giving a diazepam or midz

Nocturnal seizures are the only trigger being sleep. A trigger impossible to avoid, I’m not aware of them at all do not respond to any pain triggers can not hear see despite my eyes being being open during them and they do not last over 10 minutes. All my muscles contract to which cause a a re injury to a pre existing leg injury each time.

5 ICU admissions stopped breathing, and after I do stop seizing they administered a benzodiazepine (keppra / diazepam/midz)

After every seizure I go into a 2- 12 hour coma like state including non responsive to pain triggers, INCLUDING when they put an IO into my BONE. It is a shock when I wake up with bruises everywhere. Buy they pain trigger points” blowing air in my face ect

I had one EEG that I went into “seizure” however it was not like my normal seizures and I was heavily medicated on IV keppra and my waves were mostly normal except some beta waves and I was awake and I was also on keppra at the time and given diazepam 6 minutes into a 90 minute eeg. And only 2 minutes into a seizure like episode which was bought on by flashing lights I’ve always been light sensitive was I given the diazepam

No MRI as of yet And been told I need further EEGs done a fully un medicated EEG I’m on an anti seizure medication currently which has I’ve noticed reduced some severity and amount)

Seen a MH doctor and started CBT he now has stated it may be difficult due to there be no memory of the moment no anxiety no stress and no concerns of the events,I’m naturally a very calm person and this came out the blue and suddenly

At this point in time I’m waiting on a mri, multiple EEG tests and a neurologist. To figure why this seizure only happened in N2/N3 or deep sleep or when actually asleep and why the only other trigger being when i passed out any state of unconsciousness being a trigger and the only trigger and no recollection of the events and sometimes days due to coma like states.

If anyone with epilepsy has a similar experience I’d greatly appreciate it or a miss diagnosis of FND or a overlap as i know that can happen as I’ve had one “seizure” that was not in me sleep during the EEG.

u/Tizzles_ — 1 month ago

Anyone a paramedic with epilepsy?

Not yet diagnosed specific type of epilepsy) but I have seizures on a nearly nightly basis out of deep and core sleep being one of my only triggers as well as POTS passing out which i thankfully can manage. And often avoid triggers to pots.

I’m on Topiramate which also helps my Familial hemiplegic migraines and it has reduced my seizures to allow me to light sleep. (Awake sleep ) I’m on 200mg daily. Unless I have a serious seizure (stop breathing) my gp ups it by 50mg day and night)

**I’m currently awaiting a neurologist for find out specifically what is going on, these seizures are new triggers by a medication given to me, (**buprenorphine) which I turned out to be allergic to unfortunately I was just given more of it after my first seizure as the nurse thought it wasn’t a seizure it was normal 150mg 200mg and 350-400mg until i couldn’t stop seizing. And someone ACTUALLY said that was a seizure. I was in hospital for pain management.

I’m a 2nd year paramedic student in my second last year of para medicine it’s my dream job and next year I’ll be doing clinical work on the ambulance..

Is anyone a paramedic with epilepsy/ seizures! ? Is it possible

Or not should I drop out? Right now it’s not looking good especially with how bad they can be. I know it has a lot to do with driving and I was thinking Bec my triggers come out of sleep maybe I could?

Like I said it’s my dream job and I’ve worked very hard the past 2 years to get to my last year

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u/Tizzles_ — 1 month ago
▲ 1 r/trauma

How can I help myself get over a VERY irrational fear?

VENT/need HELP

POSSIBLE TW

So I 18F, was in hospital 40+ days due to seizures during that I was in the ICU 5 times

2nd time I was suddenly taken off keppra due to one a shortage of IV keppra at the time and it was not helping with my seizures. So they suddenly stopped it.

I was told there was a shortage by a nurse on the ward for one and then it wasn’t helping (which I knew) after THE DOSEAGE GOT UPPED.

Anyhow I had went into a 2.5 seizure cluster and lost a good amount of Oxygen moved to ICU put oxygen, stats dropped normally do, Bp, HR 30s ect coma like state (my normal after my seizure this one lasted 12 hours (my longest) i eventually came out of it i freaked i didn’t know where I was they explained where I was ect

They said took my off keppra and gave my all the rescue meds tried to explain that I had may have some memory issues.

I gradually lost more memories..

The doctor walked in. He looked EXACTLY LIKE a guy from my past he spoke exactly like a guy from my past. The nurse walked in he looked EXACTLY like the guy from my past. ( same experience) i told them I want to leave and as I gradually lost more memories i couldn’t remember my past injuries

So my leg injury I thought they did. I ended up thinking I was in a lab NOT A HOSPITAL. I took out my cannula, I have (some) medical training paramedic student I did not rip it up dispite my state but the doctor grabbing my wrist triggered me majorly he did not do it gently and he already had set me off. In my head.

At that point I took off all the monitors all cannulas and told everyone to get away from me when everyone left I tried to walk i couldn’t (i couldn’t before) but i couldn’t remember that) I thought they were experimenting on my leg. And I fell I used the bed and ended up hopping I was calm. I managed to hop out till the nurse came in.

After 3 times the bed ended up getting taken off me Bec the nurse and doctor had to come in and hold me up against the wall to keep me up. Begging to leave the “lab” I kept losing more memories i couldn’t remember my address who I live with or anything abt my recent life. BEGGING for my clothes I was in a gown in the icu ofc

and from my past. I was there again a mattress on the ground and while at the start I was just asking to leave.

Now I was in a full panic attack a mattress on the ground,

I was now fully crying begging the doctor and nurse to leave as they called a code grey after 2 hours, and threatened to sedate me and I was in a corner again in an experience again. I believe they were those same people i could not tell any different.

I did not get sedated. I promised to stay on that mattress all night i stayed up till 6 am with that doctor watching me and nurse watching me both sitting on a chairs

The doctor wanted a cannula in when i fell asleep i promised not to fall asleep I was terrified. I forced myself to stay up watching them all night as they did me for 3 hours each time time I put my legs off the mattress off the bed the doctor would come over and tell me he’d sedate me if I don’t stay there.

I ended up passing out at 6am waking up 3 hours later. Here’s the irrational fear

Those 3 hours, I woke up not knowing my name or anything I woke up with the bed moved I had a seizure (as I usually do when I pass out /sleep)

Those men at that moment i believed they were someone else I don’t trust them it’s really hard to explain this irrational fear. It’s exactly that. And I caused it to myself. Waking up with the bruises on my wrists and sternum arms legs, and jar back and in so much pain from being held up against the wall and the seizure.

I would recover later that day recovering my memories I’d have that same nurse 2 days Id get my bed back. I’d have that exact same doctor, all the other ICU admissions almost all MET calls during those 40+ days hospital admission. I was 4 hours from my house and my parents were NOT ONCE notified including when I had amnesia i missed my brothers 14th birthday. Something I’ll never get back.

And a irrational fear a fear a question that isn’t actually a question Bec nothing happened because while “rough” doctor (caused bruises ) it’s protocol I can understand that as a medical student I truly can it’s not their fault at all but it’s just something I had to get off me chest that I’ve been thinking abt constantly since it happened a month ago.

And as much as it’s irrational it was terrifying.

Edit:

For the actual event I did not go to therapy no, i dealing fine, I have always showed an interest helping others, so i would study psychology (courses) throughout high school) after I WENT on a rampage of it. I helped myself through it, anyhow going to therapy for a simple trigger seems silly. I should 100% be able to get over it

I also can acknowledge it’s irrational, I can take accountability for my actions I as a medical student know it’s protocol I know they were doing their jobs. I know they were helping. I can acknowledge all of that.

There’s no question to that. But there’s still that “question” “what happened” that realistically I do actually know the answer but it’s a fear due to my past so how can I help myself get over it fast.

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u/Tizzles_ — 1 month ago

Is it stupid to get therapy for a trigger for ptsd when you didn’t need it for actual event you dealt with it fine on ur own?

I recently got triggered, now I have a irrational fear, which i know is irrational I can acknowledge it is but it’s a question I have constantly and a fear I have constantly other then that I I was totally fine on my own I like being independent I didn’t go to therapy I did not tell anyone about the events of the PTSD. Either I dealt with it on my own terms i acknowledged it I also began to study psychology more which helped however after this trigger yeah no I can not get this VERY VERY irrational out of my head.

And honestly? I’m not sure therapy will help either because I can acknowledge it’s irrational absolutely I can take accountability for my actions in the trigger. I can realise triggers happen. I do have an understanding. I am unsure what else they can do.

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u/Tizzles_ — 1 month ago
▲ 1 r/ptsd

How to get over this irrational fear?

So I 18F, was in hospital 40+ days due to seizures during that I was in the ICU 5 times

2nd time I was suddenly taken off keppra due to one a shortage of IV keppra at the time and it was not helping with my seizures. So they suddenly stopped it.

I was told there was a shortage by a nurse on the ward for one and then it wasn’t helping (which I knew) after THE DOSEAGE GOT UPPED.

Anyhow I had went into a 2.5 seizure cluster and lost a good amount of Oxygen moved to ICU put oxygen, stats dropped normally do, Bp, HR 30s ect coma like state (my normal after my seizure this one lasted 12 hours (my longest) i eventually came out of it i freaked i didn’t know where I was they explained where I was ect

They said took my off keppra and gave my all the rescue meds tried to explain that I had may have some memory issues.

I gradually lost more memories..

The doctor walked in. He looked EXACTLY LIKE a guy from my past he spoke exactly like a guy from my past. The nurse walked in he looked EXACTLY like the guy from my past. ( same experience) i told them I want to leave and as I gradually lost more memories i couldn’t remember my past injuries

So my leg injury I thought they did. I ended up thinking I was in a lab NOT A HOSPITAL. I took out my cannula, I have (some) medical training paramedic student I did not rip it up dispite my state but the doctor grabbing my wrist triggered me majorly he did not do it gently and he already had set me off. In my head.

At that point I took off all the monitors all cannulas and told everyone to get away from me when everyone left I tried to walk i couldn’t (i couldn’t before) but i couldn’t remember that) I thought they were experimenting on my leg. And I fell I used the bed and ended up hopping I was calm. I managed to hop out till the nurse came in.

After 3 times the bed ended up getting taken off me Bec the nurse and doctor had to come in and hold me up against the wall to keep me up. Begging to leave the “lab” I kept losing more memories i couldn’t remember my address who I live with or anything abt my recent life. BEGGING for my clothes I was in a gown in the icu ofc

and from my past. I was there again a mattress on the ground and while at the start I was just asking to leave.

Now I was in a full panic attack a mattress on the ground,

I was now fully crying begging the doctor and nurse to leave as they called a code grey after 2 hours, and threatened to sedate me and I was in a corner again in an experience again. I believe they were those same people i could not tell any different.

I did not get sedated. I promised to stay on that mattress all night i stayed up till 6 am with that doctor watching me and nurse watching me both sitting on a chairs

The doctor wanted a cannula in when i fell asleep i promised not to fall asleep I was terrified. I forced myself to stay up watching them all night as they did me for 3 hours each time time I put my legs off the mattress off the bed the doctor would come over and tell me he’d sedate me if I don’t stay there.

I ended up passing out at 6am waking up 3 hours later. Here’s the irrational fear

Those 3 hours, I woke up not knowing my name or anything I woke up with the bed moved I had a seizure (as I usually do when I pass out /sleep)

Those men at that moment i believed they were someone else I don’t trust them it’s really hard to explain this irrational fear. It’s exactly that. And I caused it to myself. Waking up with the bruises on my wrists and sternum arms legs, and jar back and in so much pain from being held up against the wall and the seizure.

I would recover later that day recovering my memories I’d have that same nurse 2 days Id get my bed back. I’d have that exact same doctor, all the other ICU admissions almost all MET calls during those 40+ days hospital admission. I was 4 hours from my house and my parents were NOT ONCE notified including when I had amnesia i missed my brothers 14th birthday. Something I’ll never get back.

And a irrational fear a fear a question that isn’t actually a question Bec nothing happened because while “rough” (caused bruises ) it’s protocol I can understand that as a medical student I truly can it’s not their fault at all but it’s just something I had to get off me chest that I’ve been thinking abt constantly since it happened a month ago.

And as much as it’s irrational it was terrifying.

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u/Tizzles_ — 1 month ago

Not diagnosed epileptic looking into after being told I have a potential miss diagnosis wondering if anyone can relate

After more then a month in the hospital I have a diagnosis of FND over 180+ seizures after being given a medication, I never should of been given as it induced seizures and they continued and I now have FND. They they administered a benzodiazepine each time otherwise a seizures would continue for 3 -6 hours before giving a diazepam or midz

Nocturnal seizures are the only trigger being sleep. A trigger impossible to avoid, I’m not aware of them at all do not respond to any pain triggers can not hear see despite my eyes being being open during them and they do not last over 10 minutes. All my muscles contract to which cause a a re injury to a pre existing leg injury each time.

5 ICU admissions stopped breathing, and after I do stop seizing they administered a benzodiazepine (keppra / diazepam/midz)

After every seizure I go into a 2- 12 hour coma like state including non responsive to pain triggers, INCLUDING when they put an IO into my BONE. It is a shock when I wake up with bruises everywhere. Buy they pain trigger points” blowing air in my face ect

I had one EEG that I went into “seizure” however it was not like my normal seizures and I was heavily medicated on IV keppra and my waves were mostly normal except some beta waves and I was awake and I was also on keppra at the time and given diazepam 6 minutes into a 90 minute eeg. And only 2 minutes into a seizure like episode which was bought on by flashing lights I’ve always been light sensitive was I given the diazepam

No MRI as of yet And been told I need further EEGs done a fully un medicated EEG I’m on an anti seizure medication currently which has I’ve noticed reduced some severity and amount)

Seen a MH doctor and started CBT he now has stated it may be difficult due to there be no memory of the moment no anxiety no stress and no concerns of the events,I’m naturally a very calm person and this came out the blue and suddenly

At this point in time I’m waiting on a mri, multiple EEG tests and a neurologist. To figure why this seizure only happened in N2/N3 or deep sleep or when actually asleep and why the only other trigger being when i passed out any state of unconsciousness being a trigger and the only trigger and no recollection of the events and sometimes days due to coma like states.

If anyone with epilepsy has a similar experience I’d greatly appreciate it or a miss diagnosis of FND or a overlap as i know that can happen as I’ve had one “seizure” that was not in me sleep during the EEG.

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u/Tizzles_ — 2 months ago
▲ 1 r/FND

FND diagnosis

After more then a month in the hospital I have a diagnosis of FND over 180+ seizures after being given a medication, I never should of been given as it induced seizures and they continued and I now have FND. They they administered a benzodiazepine each time otherwise a seizures would continue for 3 -6 hours before giving a diazepam or midz

Nocturnal seizures are the only trigger being sleep. A trigger impossible to avoid, I’m not aware of them at all do not respond to any pain triggers can not hear see despite my eyes being being open during them and they do not last over 10 minutes. All my muscles contract to which cause a a re injury to a pre existing leg injury each time.

5 ICU admissions stopped breathing, and after I do stop seizing they administered a benzodiazepine (keppra / diazepam/midz)

After every seizure I go into a 2- 12 hour coma like state including non responsive to pain triggers, INCLUDING when they put an IO into my BONE. It is a shock when I wake up with bruises everywhere. Buy they pain trigger points” blowing air in my face ect

I had one EEG that I went into “seizure” however it was not like my normal seizures and I was heavily medicated and my waves were mostly normal except some beta waves and I was awake and I was also on keppra at the time and given diazepam 6 minutes into a 90 minute eeg.

No MRI as of yet And been told I need further EEGs done a fully un medicated EEG I’m on an anti seizure medication currently which has I’ve noticed reduced some severity and amount)

Seen a MH doctor and started CBT he now has stated it may be difficult due to there be no memory of the moment no anxiety no stress and no concerns of the events,I’m naturally a very calm person and this came out the blue and suddenly

Anyone else.

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u/Tizzles_ — 2 months ago