I'm freaked out looking for support

[whiteraven]

Even that can be hard, because of the timing.

Yes. The other thing is that sometimes, seizures originate from deep within the brain and a standard scalp EEG will not record them. I have had several normal EEGs, but when electrodes were implanted and when I had nasopharygeal leads, they were abnormal.

 

[mylunareclipse]

I have had something like this happened, when I recovered a pretty bad memory through a flashback. My whole body was seizing uncontrollably and I had no access to my limbs. It took a few min and then it was done.

 

[Dynamic]

I hope everyone who posted sees this. For some reason I'm not being notified when this thread has new replies? Just want to thank everyone. My T said the same thing about the diagnosis. You guys are helping me. I wish I saw these sooner...did I somehow turn off notifications?

I def need the support still. Since I couldn't finish the MRI and don't plan to ever try one again. I'm hoping the neurologist is understanding.

I did successfully do better during an episode two days ago. My T said for sure progress. I am totally unaware of epileptic stuff. I am sorry if I've been insensitive to that. I definitely do not know very much about this at all. Just my primary and the neurologist both believe , it's PNES and from dissociative disorder.

I go back to the neurologist sometime in this month.

I have had something like this happened, when I recovered a pretty bad memory through a flashback. My whole body was seizing uncontrollably and I had no access to my limbs. It took a few min and then it was done.

Thanks for the reply! I've read in this forum. And my marriage T gave me a book. The body keeps the score. And about somatic memory or somatic something. It's interesting and helpful.

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.

Wow having both. I appreciate your input very much!

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.

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.

You're right. To be honest I was a little hurt because I did look up the petit mal and that didn't seem at all like what I experienced. But either way you're still absolutely right. I can't self diagnose this. And I absolutely love how you elaborated that it's like a massive panic attack that's what I do resonates with it being. Between my T and you all. I'm now refocused on getting answers. Because it's not like wondering if it's a mosquito bite or a hive.

 

[Dynamic]

My appointment went awful. I'm so pissed off I can't even explain it all out. But I can say I dissociated and couldn't get up. They left me in the room. Sent some clinician in. Left. Blasted the AC in the room because I was sweating . I've been having so many flashbacks this past week.

I am going to am open mri. And doing the EEG without video in my home.

I feel like crap. So volatile of emotions. My ears hurt.

 

[TruthSeeker]

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.

Had absence seizures.....you often don't know, and aren't aware you are having them if they are brief.....but they look similar to dissociation......a form of zoning out. Absence typically are known as "staring spells (an old term but accurate) but then there are absence seizures with some movement involved. It gets complicated. Seizure meds can often stop them, but you'd need an EEG to see if they can induce them with flashing lights. Yep, I'd head straight to a neurologist at a teaching hospital, which has an epilepsy clinic. They will be able to determine whether your zoning is neurological or emotional. Good luck with that! Sorry I didn't read the whole post and posting date......and your follow up.....but hoping you figured it all out.

 

[Dynamic]

Hey just a quick update. I re read thru the thread and really-- wow you guys came right in so helpful. thank you.

Currently: I have moved, delayed EEG. EEG is scheduled and I've agreed to go to an open MRI.
Should schedule that on Tuesday.

What could you tell me about or to help be prepared for an EEG study in my home 3 days? No video bc the home invasion.
Have you done an open MRI?

 

[TruthSeeker]

Hey just a quick update. I re read thru the thread and really-- wow you guys came right in so helpful. thank you.

Currently: I have moved, delayed EEG. EEG is scheduled and I've agreed to go to an open MRI.
Should schedule that on Tuesday.

What could you tell me about or to help be prepared for an EEG study in my home 3 days? No video bc the home invasion.
Have you done an open MRI?

It's easiest if you wear a button down shirt.......since you are going home. you'll need something easy to get in and out of at bedtime. I had an EEG for 24 hrs at home. They don't want you to have washed your hair that morning but I would take a quick bath since you are going to be monitored 3 days.......so wash your hair the day before.. Wear a coat w a big hood or sweatshirt w a hoodie in case you get self-conscious......and want to cover your head walking to and from the eeg clinic. There is no prep other than what the doc tells you to do....

 

[Dynamic]

Update! The EEG went well. I had some strong weaknesses but also strengths during and around the study, I'm happy it's done!