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Re: Conversion Disorder Seizures

Postby Akuma » Tue Mar 10, 2015 6:58 am

Mrsderby0624 wrote:Be warned. Having a seizure, even PNES, in a psych clinic will get the paramedics called, or at the very least, you referred to a medical doctor. That's why I bought the book. I'm going to have my psychiatrist read it so she will (hopefully) understand what is going on. No matter what you say, if it "looks" medical it must be.

I did finish the book. It was like the author actually knew me! I may have a handle on my trigger but I want to consult with someone first.

Can I ask what country you're in?

I do wish you the best of luck.


Well after my first interview I convinced the psychiatrist in the clinic not only that my self-diagnosis of hypersensitive narcissism is correct but he seemed actually surprised that I have so much knowledge. I told him about the PNES, he simply noted it down without any further comment, since we were almost at the end of the talk-time already. Since I have my second preparatory talk there tomorrow it is possible that he will ask me about them in more detail. They are directly connected to a university there and when asked about why i chose their clinic I told him that I did so because one of their scientific staff had noted "somatization" in her list of interests, which he acknowledged.

Im from Germany.
dx: dissociative disorder + npd
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Re: Conversion Disorder Seizures

Postby Mrsderby0624 » Tue Mar 10, 2015 7:22 pm

I wish you the best of luck.

Keep me posted.

P.s. Not sure how narsistic you can be since you seemed concerned with my well being. My mother is a narsistic and will not listen to me because she is only concerned about herself. You must be an exception. You are just fine in my book.
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Re: Conversion Disorder Seizures

Postby lumpy68 » Fri Mar 23, 2018 1:11 pm

It seems this is an old thread...

However people may see it and perhaps find it useful?

I have "Psychogenic Non Epileptic Seizures" as well. And I went two years of serious abuse being told by all the medical "Professionals" that it is "All in your Head!!!"

I'm here to tell you Yes! It IS All in my Head! Just like the stroke that killed my father as well as the Epilepsy that others suffer from. Parkinson's Disease is also all in their head too!

They confuse Neurology with Hypochondria though.

But on the bright side at least they were able to figure out where the center of the nervous system is? I would be more upset if they told me it was all in my ankle ;)

Ok now on to more serious matters.

PNES aka Conversion Disorder, aka Dissociative Seizures, aka Pseudo Seizures, aka Psycho Somatic etc, are real and not delusional. They are in the second category of seizures and 10% of Epileptics have them in addition and are very hard to properly diagnose if you have both. The proper way to diagnose them is what is called a V-EEG or Video EEG. They usually take about 5 days of 24 hours video monitoring along with the standard EEG. Usually these are done in a University Hospital by a well trained Neurologist specializing in Seizure Disorders for they are that complex. The Staff there see them 7 days a week, 364 days a year. They take them just as seriously as any other form of seizure.

in America they are in the DSM under "Somatoform Disorders" However under the International ICD they are properly listed under the category of Dissociation. They are a Trauma Disorder. The usual cause of them is childhood Trauma. Combat vets see them frequently as well as others who experience severe Trauma.

They commonly don't show up until later in life though for some reason. Usually brought on by severe stress.

They are crippling and can be very painful. I live in Oregon and grow CBD strains of Cannabis with .03% to .3 % THC. Charlette's Web aka AC/DC is what is hanging up next to me right now for treatment of these seizures. Sadly CBD's although very healing don't do jack for these seizures.

From my research and the official literature supports this as well is that they are caused by an internal (most of the time, but heavy shelling or explosions can also cause them) emotional or psychological conflict.That is the case with mine. Just like Epilepsy, they can be triggered by stress. In my case usually anything reminding me of child abuse or simply switching from one part of me abruptly to another (DID).

if properly diagnosed quickly (no more than 2 weeks are you to go, without being seen by a Neurologist from the first seizure) they can be treated properly and be relieved of them. However if allowed to be over 6 months they become chronic which usually is something to be suffering with, well chronically.

It took me over 2 years to be seen by a Neurologist who couldn't for the life of her understand why it took more than 2 weeks to see me. She immediately thought as I suspected that they were also Psychogenic but as a garden variety Neurologist she had to refer me to a University Hospital for a V-EEG and for a well trained Neurologist specializing in Seizure disorders to make such a diagnosis for they are not qualified to do that.

She explained that if they were, it was not good because at least Epilepsy they have effective medications for treating them and the only treatment for PNES is Psychotherapy and they never see good results with that.

It was actually a "Trauma Informed" Therapist "Treating" me for PTSD that brought mine on due to his abuse. So it's no wonder Neurologists see PNES as a crippling long term disorder that usually has a person on Disability for life.

It's a quirky Trauma Disorder to be sure. Sometimes and not uncommon just the Dr explaining to the patient what it is will cure it on the spot.I am guessing that once knowing what is causing them can untangle the emotional or psychological blockage that is causing them? *shrugs*

I suffered from very serious and crippling ones for over two years dozens a day, and then soon after my V-EEG and discussing it in depth with the very good Trauma informed Neurologist who diagnosed me, mine dropped to a few minors ones a month and now are almost gone unless I get seriously triggered by child abuse reminders. And even still are much less severe and don't last but a minute or so.

Just knowing for sure what they are, what causes them and that they are just a short term bummer seems to lesson the intensity of them both in length and amplitude.

I really want to stress just how crippling these types of seizures are! They were literally killing me due to the stress on my body and mind and was having dozens of intense ones a day and just one would wipe me out for hours. As Neurologists well understand, they are a VERY Serious medical condition that needs to be taken just as seriously as the other two category of seizures. In all the official literature on them they always say that the last thing a medical professional should tell a patient is that they are "All in your Head". They are legitimate Seizures. Non Epileptic Seizures kill more people than Epileptic ones and they know that. Fortunately these are the category that don't so be sure to get a proper diagnosis.

One more thing to be mentioned too, These are far more common than people think. 30% of people diagnosed as epileptic are false and are PNES but are given dangerous anti convulsion medications and they can't figure out why they are not effective. When mine set in I was in a group of 8 others and 2 others in the small room had them as well. The young man who was selling me my lap top I was buying for the 5 day V-EEG had them too. They are embarrassing as can be and people are afraid to discuss them but if open about them you will quickly discover they are not so rare at all.

A good Therapist can help them or even clear them up. A Bad Therapist as I have rudely discovered the hard way can cause them as well! It's no wonder Dr's would rather see someone get Epilepsy than PNES for they see in their careers this first hand and know how little help if any at all most Therapists are. It took me 4 years and PNES to find a decent Therapist to treat my childhood PTSD.

If you are having these and being treated like a malingering hysteric like they mostly treat people and tell you that it's "All in your Head!!!" (which is why they rarely get properly diagnosed and treated in time to nip them as they should be) then you well understand why this is such a triggered thread.

This is how it is supposed to go as is clearly stated in all the official medical literature on this matter...

1. From your first seizure get a referral by a Dr to see a Neurologist asap. No more than 2 weeks.
2. The Neurologist will then refer you to a Neurologist specializing in Seizure disorders who is qualified for they are not.
3. The Neurologist specializing in Seizure disorders will order a 5 day V-EEG. (I had to take a bus 300 miles away for mine)
4. If determined to be PNES, they MAY know of a good Therapist who they work with and make an appointment asap and they will explain what it is. This all by it's self can clear them up :)

If that is Not what is happening then just move on and insist on seeing a Neurologist. Most Neurologists are well aware of this condition and will not treat you like a malingering Hysteric.
Avoid the term "Conversion Disorder" and use "Psychogenic" instead. "Conversion Disorder" is viewed as "Hysteric" and if they treat you or use terms like "Pseudo Seizure" (old term just like Hysteria) they won't help you for they ignorantly think that means delusional. Same goes for "Psycho Somatic" aka "All in your head!". Psycho Somatic and Psychogenic are exactly the same and both actually mean emotional/psychological being converted into VERY Real Physical (Somatic) conditions just like an Ulcer caused by stress or a stroke or heart attack caused by stress. all are very real and caused by emotional or psychological stress.

Sorry for the tone but this is very serious stuff and about killed me so forgive my PTSD that this has caused.

Lumpy
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