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Sloane

Neuro says Panic Attacks...I disagree - anyone have Panic Attacks like this?

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My Neurologist thinks that a few of my night time "episodes" are Panic Attacks. I don't necessarily agree (and my Psychiatrist isn't convinced either); but I'm reluctant to argue with my Neurologist.

My Neurologist actually wants me to try to get off my Seizure Meds to see if I can "do without". But before I try to convince her to keep me on Topamax because I think I'm still having seizures, I want to make sure I'm not being irrational (or health anxious) - so I ask anyone who have experienced Anxiety or Panic Attacks (or simple partial seizures) if these symptoms sound familiar?

It basically goes like this...

  1. I wake up...like my eyes just open...but I'm not completely "there" (I'm half there and just go along for the ride)
  2. I can feel my bed underneath me, and I know where I am (in my bed, in my room), but sometimes the bed feels smaller - and the room seems a lot larger 
  3. my heart is pounding slow but HARD, and then my insides start to feel like they are going "inside out" - it starts in the bottom of my stomach, and works it's way up and "out" (hard to explain an "inside out" feeling - it's not really a "out of body" feeling...but somewhere on that spectrum I guess? like wave of acid butterflies going through my system, and my system knows these butterflies "do not belong" - and these are all a feeling not thoughts...I'm just trying to explain this weird feeling LOL) 
  4. When the "inside out" feeling starts to go "right side in" I know it's almost over
  5. My perception of my surroundings go back to normal - my heart then slows down to normal - and I just go right back to sleep (the ride is over) 

In all it lasts for 2 minutes. I have no fear or anxiety related to what I would think would be related to a "panic attack". And there is no rumination or worry period (or "mental recovery" period) right after the "event". When it's over, I go straight to sleep and don't think twice about it until I wake up groggy and go "WTH".

I don't have Panic Attacks during the day, and my anxiety disorder is specific Social Anxiety/Selective Mutism when exposed to people in public; so my education and experience on Panic Attacks are indeed very minimal. As well my Simple Partial Seizures mimic this, so it's very hard to differentiate. I'm having a difficult time right now.

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Going off Topamax if your still at risk for any kind of seizures would just be unwise. I'm on Topamax too, but for migraine prevention. I also have anxiety and panic attacks. What you just described sounds a lot like something called "Sleep Paralysis". I'm obviously not a doctor, but you sound look it up. A lot of what you described matches the symptoms of Sleep Paralysis. You can do your own research and then come to your own conclusion about it, as I'm sure you know your own symptoms in more detail than me. For me personally, I don't know about everyone else, but I've never had anxiety or a panic attack in the way you described it. I hope you find some answers! Good luck!

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it sounds to me like a panic attack (or sleep paralysis. but those episodes for me induce extreme anxiety so it doesn't quite add up with my experience of them either), up until the point that you said you have no fear/anxiety/nervous before, during, or afteri would think you would at least have nervousness or discomfort or an 'on edge' feeling if it was panic-related. i have no experience with seizures or anything like that so i can't be of any use on that angle

Edited by cosima

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Thank you IcePrincess for your input, and your suggestion. 

I agree about the Topamax; however it isn't too uncommon to come off seizure/epilepsy medications when you have been seizure-free after so long. Question is, am I really seizure free?

As for the Sleep Paralysis...I am aware of what it is and I am sure this is not it. With Sleep Paralysis your brain wakes up before your physical body, and you are unable to move - and there are commonly hallucinations involved. With my "events" I am able to move, and even though my perceptions are off i don't have any hallucinations.

Cosima - that is where I am lost also. I can see where my Neurologist says it might be Panic. But it doesn't "feel" like a Panic Attack, or connected to my usual Anxiety. Even my Psychiatrist says with Panic Attacks, there should be some sort of fear.

The only thing I really can relate to fear during these episodes is when it first begins (when I first wake up to my heart beating hard). I focus on my heart which hurts, and it feels "intense". But it's not panic or fear like in anxiety, I just have a "intense" feeling (which is actual more of a physical manifestation that ties with the "inside out" feeling). I wonder it this "intense" physical feeling could really classify as the Panic/on edge/nervousness?

Edited by Sloane

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Cosima - that is where I am lost also. I can see where my Neurologist says it might be Panic. But it doesn't "feel" like a Panic Attack, or connected to my usual Anxiety. Even my Psychiatrist says with Panic Attacks, there should be some sort of fear.

The only thing I really can relate to fear during these episodes is when it first begins (when I first wake up to my heart beating hard). I focus on my heart which hurts, and it feels "intense". But it's not panic or fear like in anxiety, I just have a "intense" feeling (which is actual more of a physical manifestation that ties with the "inside out" feeling). I wonder it this "intense" physical feeling could really classify as the Panic/on edge/nervousness?

maybe. it's really hard to say because the way we perceive panic attacks as individuals can differ greatly.. i've had panic attacks that seemed also entirely physical and unrelated to any mental anguish - those are the kind that often drive people to the ER because it just seems so purely and definitively physical and that's when terror rears its ugly head because you start worrying you're having a heart attack, stroke, a seizure, etc. i used to have panic attacks when i was falling asleep or just waking up at night - out of the blue, my heart would start pounding like crazy and i would get that halfway out of body experience that you described and things did/would seem distorted in terms of physicality and spatial perception, though this would trigger panicky thoughts and it would make the symptoms worse and eventually become unbearable, and that would continue the cycle.

these types of panic attacks are rarer for me and different than the ones i typically get (related to social stuff usually.. meetings, appointments, presentations, whatever). those typical ones come on like clockwork and have a wider variety of typical 'fight or flight' symptoms and they're associated with that intense rumination and fear of embarrassment.

are these episodes similar to any of your past seizures? is it a similar sensation and experience? you know yourself best and if you genuinely believe it might be a manifestation of your seizure disorder then i would push that with your neuro. while a lot of strange physical shit can be attributed wholly to anxiety, doctors can also sometimes brush off your concerns when you've been diagnosed with an anxiety disorder and you deserve to have this thoroughly addressed.

Edited by cosima

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Thank you Cosima. You make a lot of valid points, and I am taking everything in. I don't have all the mental power to make a full and thoughtful reply that I would like, but know I am thankful for your input.

You are right about Panic Attacks, and how they can manifest differently in people - even in purely physical ways. That's what makes me second guess my own intuition, and wonder if I should let my Neurologist take control of my treatment. However the "inisde out" feeling I describe is a very familiar feeling, and very specific to my seizures. Which is why I'm particularly reluctant to call them Panic Attacks. 

Doctors, especially Neurologists, really are notorious for brushing off concerns of the MI. And this is pretty much what she is doing. Whether to fight her or not on the this, is the issue. And one I will have to think about. Thank you Cosima.

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FWIW, my neuro has nothing to do with the panic/anxiety attacks I have at all.  That is my pdocs area.  ie, if I was having a panic attack i'd call pdoc. If I called neuro, he'd refer me back to my pdoc.

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FWIW, my neuro has nothing to do with the panic/anxiety attacks I have at all.  That is my pdocs area.  ie, if I was having a panic attack i'd call pdoc. If I called neuro, he'd refer me back to my pdoc.

My Pdoc doesn't think I'm having Panic Attacks, she thinks my "attacks" are Neurological. I didn't even think of Panic Attacks the first place until my Neurologist asked me to talk to my Psychiatrist about these to get a "second opinion" (since I already have Social Anxiety Disorder, my Neurologist thinks it's most likely I have Panic Disorder and not night seizures since my other seizure are controlled with AEDs).

So my Pdoc sends me to my Neuro and my Neuro sends me to my Pdoc; they can't seem to agree on origin. A VEEG would tell but I never seem to have episodes during the time allotted.

Edited by Sloane
more info

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I hate getting that passed-around feeling.  Could you have them speak on the phone together so someone can help?

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I can't diagnose in any way, but what you describe sounds somewhat similar to my night time panic attacks which is the only time I get actual panic attacks. Yet it is different. When I get my attacks, I feel as though I am sinking into my bed and brown and blue flashes are going off all around me and a feeling like I am dying and like my heart has stopped. I feel the need to yell out. When I come out of it, I realize that my heart is still beating and has been all along. I don't consider the possibility of seizures because I'm on two different anti-seizure medications.

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