I'm freaked out looking for support

Defaultxlovee

Confident
I had to see a neurologist yesterday because I had what appeared to be a seizure in physical therapy. I was in physical therapy for a sprained neck, from a ptsd flashback. Sounds crazy but it's true. I had to get shots in my neck. The physical therapists talked about fascia and how emotions are stored in it. Makes sense to me. Energy has to go somewhere. I believe my physical reactions was to stop the adrenaline surge and yucky stuff from reaching my brain because I was covering my ears (the initial reaction) and hunkering my neck into shoulders like a turtle or something. And silent screaming.

Anyway. I was getting light massage from the PT.

It was causing paralyzed effects. I couldn't walk. Felt numb. I would sweat and get flushed.

Then the last PT I had (but was scheduled for more) I had a seIzure like response. Not like epileptic but a dissociative seIzure. Has anyone had this?

If you can relate at all please post!! I need the connection right now.
 

Friday

Moderator
Makes sense why they’d send you to a neurologist… massage following neck trauma resulting in numbness/tingling hot/cold = classic nervous system responding to injury & see a doctor immediately. Been there, done that.

As far as absence seizures, nope. Never had those. I’ve dissociated tons, but even though they may look the same, an absence seizure and dissociative spell have very different causes/treatments.
 

whiteraven

MyPTSD Pro
So, I was diagnosed with epilepsy in my early 20s. I have several different kinds of seizures, and I also have a dissociative disorder. Get a 2nd, 3rd, and 4th opinion, if you can, because some seizures can look and behave very much like dissociative episodes and vice versa. I'm still not clear which is which in my case. But what I noticed was that every doctor has his own opinion and bias when it comes to folks with psychological issues, and you don't want to go through years and years on the wrong meds (with their long-lasting side effects) like I did.
 

Defaultxlovee

Confident
Makes sense why they’d send you to a neurologist… massage following neck trauma resulting in numbness/tingling hot/cold = classic nervous system responding to injury & see a doctor immediately. Been there, done that.

As far as absence seizures, nope. Never had those. I’ve dissociated tons, but even though they may look the same, an absence seizure and dissociative spell have very different causes/treatments.
I just saw this now. I completely forgot I made this post. Ha. Anyways thanks for the reply. I'm getting a brain MRI oct 26.

Never heard the term absence seizure before 🤔

So, I was diagnosed with epilepsy in my early 20s. I have several different kinds of seizures, and I also have a dissociative disorder. Get a 2nd, 3rd, and 4th opinion, if you can, because some seizures can look and behave very much like dissociative episodes and vice versa. I'm still not clear which is which in my case. But what I noticed was that every doctor has his own opinion and bias when it comes to folks with psychological issues, and you don't want to go through years and years on the wrong meds (with their long-lasting side effects) like I did.
Thank you for your reply. I'm sorry you went through that.
 

Defaultxlovee

Confident
You may know them by the older term "petit mal."
That's not what happened to me. Dissociative seizure is like a seizure also called pseudo seizure. That the body signals to the brain to shut off. Like dissociation ithink right? But to such an extreme , I had fluttering eyes, numbing and curling of my hands. I felt like there was a huge hole in my chest where my innards are. Down to my waist. I couldn't get up for a half hour. 😑 It started as a temporary paralysis. Like an extreme anxiety response I didn't have control over my body. It was so scary. No wetting or soiling myself. No biting tongue. Because of the other times in PT we set it up to where I saw my primary right after PT. And he said the emotional release was too much for me to handle. He wanted to rule out any neuro possible underlying neuro issues which I have the brain MRI. Thanks for talking about this with me. 😟 I get sad and feel like a freak and hate it.
 

whiteraven

MyPTSD Pro
I didn't have control over my body. It was so scary. No wetting or soiling myself. No biting tongue.
The majority of seizures don't result in incontinence or tongue-biting. And many of them even the person having them doesn't recognize as a seizure.

Glad to hear you're getting a scan. Wondering if you've had an EEG?
 

Defaultxlovee

Confident
Yeah I didn't know what was going on. Until I looked up everything at home. Idk what else it could be. That's why I posted. No EEG. What is that? I really appreciate your input.

*Just looked it up* it's PNES psychogenic non epileptic seIzure. Used to be called pseudo seizure or still referred to as. I'm all jumbled up probably not explains it right.

The majority of seizures don't result in incontinence or tongue-biting. And many of them even the person having them doesn't recognize as a seizure.

Glad to hear you're getting a scan. Wondering if you've had an EEG?
Sorry for many responses. They wanted to do an at home EEG with video and I couldn't agree to it. I had a home invasion . Too similar for me. Had to look up EEG lol
 
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whiteraven

MyPTSD Pro
Sorry for many responses. They wanted to do an at home EEG with video and I couldn't agree to it. I had a home invasion . Too similar for me. Had to look up EEG lol

I wonder if you could do an ambulatory EEG? It's not with video and you can be anywhere (although you look kind of funny with a hat and all those wires LOL). Or even just a standard one, which takes like 45 min and is done outpatient?
 

Defaultxlovee

Confident
I wonder if you could do an ambulatory EEG? It's not with video and you can be anywhere (although you look kind of funny with a hat and all those wires LOL). Or even just a standard one, which takes like 45 min and is done outpatient?
I hope so!! I have to wait til I see her in Nov to find out.

When I called in to say I couldn't agree to the in home one. The lady could have given me an attitude and seemed frustrated with me bc I asked her if the Dr could do something else. She was a little short cold feeling to me. And just said either you want to do this or not.

😳Great doctor though. I'm eager to see her. It's at least in beginning of Nov.

I welcome the silly hat with wires lol
 

joeylittle

Administrator
I asked her if the Dr could do something else. She was a little short cold feeling to me. And just said either you want to do this or not.
The best way to diagnose seizures, hands down, is the EEG. Even that can be hard, because of the timing. An epileptic seizure (what most people just call seizures) comes in multiple forms, but what tells the neurologist it's a seizure? Electrical brain activity. EEG reads electrical brain activity.

So, I understand why the receptionist was short - though it sounds like she assumed you knew more than you do.

Blood tests can identify certain types of seizures, but not all of them, and that info along with what others observe of the activity will create a clearer picture for the neurologists.

PNES are non-electrical. So, if you want to know for sure that you don't have a seizure disorder - you need to get properly diagnosed.

If you drive a car? Operate machinery? Then you really need to get diagnosed. You may not care about yourself getting hurt, but you should remember that you could kill someone.
That's not what happened to me.
To be honest - you don't know what happened to you, because you can't self-diagnose a seizure disorder.

PNES are a really interesting phenomenon, but they are essentially a panic attack. They are managed with aggressive interventions for anxiety, serious training in how to manage your own anxiety. And like full panic attacks - they are terrifying, and people experiencing them often believe they are dying.

I'm glad you're having the inpatient EEG, and encourage you to let the doctor do the diagnosing.
 
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