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Dissociative seizure?

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Dissociative seizure?

Postby Western » Sat Sep 05, 2020 3:03 pm

Not sure if this is what has happened to me in the past but just wondered what other people think about this or if this happens to other people here.

It started to happen about 3 years ago and I had a spell of them. I even had an mri scan and an eeg but nothing showed up and my episodes were wrote off as panic attacks and they did also fade away after a time but still do occasionally happen.

It's even difficult for me to explain the symptoms. At the time I just kept telling people that all my muscles start twitching and it's as if everything around me changes. I then get really emotional and then it's like something clicks in my brain and my voice changes and I'm like a different person. Calmer even. This is were I couldn't agree with it being a panic attack.

A similar thing has happened to me today. Had a bad morning. Can't really go into it but I think something triggered me. Became like really drowsy. Can't stand to speak because it's like my voice is echoing in my head and I don't recognise the tone. And I can sort of feel the blood flowing through my veins. My eyes feel really heavy as well. It feels like I'm at an in between place. Like Im in between two states of consciousness if you know what I mean. Just waiting for that switch to flick.

I think I'm on about two different things here but if anyone has any insight I would be glad for your input.
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Re: Dissociative seizure?

Postby ArbreMonde » Sun Sep 06, 2020 7:12 am

It does sound like dissociation to us. Either "regular" one or together with some sort of switch. (both can happen to the same person).

Nothing showing on the MRI and EEG is good news, it means there is no physical damage to your system. Now, to find a way to deal with the dissociation and ease up things for you, is a horse of a different color...

Only a medical person can help you find what will help you best. Some use meds to ease up the bad triggers. Some use meds to ease up the dissociation. Some use gorunding techniques. Some discover they have a vitamin deficiency and taking the right vitamin/s help ease up some of the symptoms.

In all cases, journalling about it is always a good idea. It helps you monitor your symptoms and what makes them worse or improve. It helps you keep track of what happens in your life especially if dissociation comes with amnesia. If it is an identity dissociation it will also help you sort out the different members of your system. If it comes with identity fluctuations without complete dissociation of identity it will also help you keep track of your different facets. If it turns out it's dissociation without identity issues... journalling will also help you figure this out and help you communicate with your medical team about it in order to find what help/tools/treatment is/are best for you.

Wishing you the best,

-David-
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Re: Dissociative seizure?

Postby 08uP » Mon Sep 07, 2020 5:56 am

Sounds like it might possibly be a form of epilepsy to me. Which is not uncommon and I think is probably very underreported. You should definitely talk to your doctor about it. We've had similar issues and have been prescribed medications for bipolar and for (brain) seizures, but stopped taking both because we don't like medication for reasons. Be smarter than me, please.

David sounds smart. Listen to him. And talk to a trusted doctor, in addition to ensuring that you have a healthy, nutritious diet and exercise regimen.
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Re: Dissociative seizure?

Postby ArbreMonde » Tue Sep 08, 2020 2:54 pm

Yeah, sounds like epilepsy but if EEG shows nothing... *shrugs*

Like, we had some EEG coz of epilepsy-like symptoms, turns out it was a B12 vitamin deficit. So, yeah, like David said, go see a medic, all that. Could be a lot of things. Human brain is a tricky stuff that does funky things all the time for tons of reasons.

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Re: Dissociative seizure?

Postby Western » Tue Sep 08, 2020 3:23 pm

Thank you.

I stopped going to the doctors after it kept happening and they just kept saying it was panic attacks. I felt like I was being fobbed off and that they wasn't listening. I k ow it wasn't panic attacks because after the whole episode I was really calm and literally like a different person. Even had a different voice and actually really good at sales (the job I was in at the time). The only panicky bit was the not knowing what was happening to me part.

I also thought that an eeg only showed something if something was happening at the time of the eeg so I thought this was a waste of time if I do have epilepsy anyway.

I got to a point whaer I made up my mind to just accept what was going on and try to just relax through it.

It's oy recently that my T said that I have dissociation so things are adding up more for me now and I'm relating a lot of things in my life to this. It's all making more sense now.

Thank you for your help. It helps just to know that there are others out there like me. It feels like I've searched a lifetime thinking that I'm on my own.
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Re: Dissociative seizure?

Postby ArbreMonde » Wed Sep 09, 2020 7:19 am

Western wrote:I also thought that an eeg only showed something if something was happening at the time of the eeg so I thought this was a waste of time if I do have epilepsy anyway.


It does, that's why when you go for an epilepsy EEG they try to trigger a crisis. I had flashes of light, for example.

Western wrote:I stopped going to the doctors after it kept happening and they just kept saying it was panic attacks. I felt like I was being fobbed off and that they wasn't listening.


I know the feel. Took me 5 years to find the right person to diagnose the B12 deficiency and give me the supplements I need. What helped was, I made a few graphs showing: the symptoms on my body, how all the different symptoms of all my different conditions interact with and trigger each-other, the evolution of different symptoms through time and major informations health-wise through time (other symptoms, chages of diet, treatments, analysis results...) This helped him pinpoint the issue better.

Might be useful for you to use this way of presenting your health.

Take care,

--Zami--
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Re: Dissociative seizure?

Postby Una+ » Thu Sep 10, 2020 9:00 pm

Were they using "panic attack" as a shorthand for psychogenic non-epileptic seizure, PNES? Sounds like it. PNES is just another name for dissociative seizure. Seizures are evaluated in neurology clinics, but a neurologist cannot do much for a patient with PNES except diagnose and refer. It sounds like in this clinic where you went for evaluation they have the diagnose part of the job down pat but drop the ball on the referral part. That happens a lot. There are research papers and expert clinical guidelines and websites devoted to the problem (task) of diagnosing and referring patients with PNES.

In any event what you describe sounds like not a seizure, but your personal idiosyncratic sensation of rough switching when your job in sales sometimes provokes a switch to the identity state best suited to perform in the moment. Switching is freaking weird, and extremely frightening when you have no idea what is happening to you, or why, or how to stop it or deal with it.

The good news is, if this is your problem then the solution is rather simple. You work for a few weeks or months with a DID-savvy therapist who can help you with psycho-education, safety and stabilization, coaching, and encouragement while you learn to switch smoothly. Switching is like driving a car with manual transmission; there are a lot of moving parts, conditions have to be just so, and changing gears goes very badly until you get the hang of it. Then it becomes smooth and almost automatic.

The main thing is to work with someone who is confident. Even though no one can say exactly how anyone with DID is able to switch, therapists experienced with DID know that we do switch and somehow we can learn to switch quickly and smoothly, so quickly and smoothly that no one notices anything. (Well, another person with DID or an expert therapist might see it, or rather feel it, but the rest of the world will be none the wiser.) Doesn't that sound nice. It seems this fast smooth switching isn't something anyone can teach us, but it is something we all can learn for ourselves, once we know it is possible.

What a revelation all this was for me. I remember when I first came here how I cried with envy and frustration because I had no idea how to do what others here described doing. And then I started to get the hang of it.

You too will get the hang of it.
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Re: Dissociative seizure?

Postby MakersDozn » Thu Sep 10, 2020 10:45 pm

We were thinking PNES as well, but we hesitated to speak up because, well, we're not a professional, and we've never experienced the symptoms that folks are describing here.

In any event, Western, we hope that you get the help and relief that you need.

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