Other Epilepsy vs pseudoseizures (pines)

[shimmerz]

I suffer from what used to be called pseudo seizures. A friend of mine who does suffer from epilepsy told me that what was happening to me were seizures. They started to occur with my PTSD rekindling. I had never had a history of epilepsy. I would just drop flat out and pass out but there were none of the symptoms of what would be considered an epileptic seizure.

After talking to my T, he mentioned that he thought I was experiencing pseudo seizures

http://en.wikipedia.org/wiki/Psychogenic_non-epileptic_seizures

I am just wondering how many of you actually have a diagnosis of epilepsy and whether it is possible that they are pseudo seizures instead?

 

[Suzetig]

I was treated for epilepsy between the ages of 17 and 23 however my dictir later saud he was of the view that i I was actually dissociating - my doctor hadn't considered that as an option because "I had no reason to dissociate" and only thought about it when I'd gone to seek support for mental health concerns when I left home.

 

[Laura 2]

Is the T qualified to make a medical dx? Have you had any physiological tests?

If not, I'd be very wary of accepting any presumed psychogenic label.

Psychogenic disorders are dxs of exclusion - everything else must be ruled out first. So I'd always look for a physical cause first.

First things that came to mind were a blood pressure disorder, then diabetes, then adrenal insufficiency, then TIAs, then a stenosis in the cervical/cerebral vasculature...the list of possible physical causes is long and amenable to conclusive testing, the list of psychological causes is short and difficult to prove, not to mention possibly dangerous as a first opinion.

 

[shimmerz]

@Laura 2 agreed. All things must be tested first and you give a very good list of things that should be tested for. So yes, it is not so simple as I put in this posting. However, after the testing is done for all physical causes, the possibility of pseudo seizures was not something I was aware of and it was helpful to know. I thank you for bringing this to our attention. Mine are, however, pseudo seizures that are caused by a reaction of my paraspympathetic nervous system.

@Suzetig, I didn't realize that dissociation was a precursor for pseudo seizures but it makes sense. I find it difficult to believe with all that is known about trauma these days that doctors can actually say something like 'you don't have any reason to dissociate'. How would they know that?[DOUBLEPOST=1401984568,1401984416][/DOUBLEPOST]I found this when looking up dissociation and autonomic nervous system. It seems helpful to me so thought I would share.

Link Removed

 

[Laura 2]

Thanks shimmerz, may I ask what tests you've had and how your doctors reached that conclusion?

 

[Suzetig]

@shimmerz this was about 25 years ago when much less was understood about trauma and dissociation - I was a straight A student, with a respectable family and a good social circle. No one had any reason to think things weren't ok with me hence the looking for a physical reason for my difficulties, even when they couldn't find physical evidence of epilepsy the GP treated me with anti seizure medication because it "had to be physical".

 

[shimmerz]

@Laura 2 I had very different circumstances than most, so it was obvious that mine were pseudo seizures. I won't go into why this was so as it is a long history, but the doctors (I had 5 at the time) all came to the same conclusion based on my behaviours and my instant positive reaction to Ativan and Clonazepam. This was due to the crisis I was experiencing and some life and death circumstances that these seizures put me into. Your list is very important and it would be interesting to know whether others have experienced such a formal diagnosis based on testing. Thank you for that.

@Suzetig I experienced the same thing during the beginning of the 80's. I was 20 or so and suddenly was fainting and losing weight at rapid speeds (5'10" and approximately 90 lbs). At that time as well they came to some sort of 'virus' diagnosis that summed it up nicely for the insurance company. In fact, it was all trauma related. Nobody thought of trauma at all - and it is surprising that many people still don't see how the trauma affects the body, not how the body is displaying symptoms that trauma may be creating.

 

[Laura 2]

@shimmerz
Many thanks for that history, I didn't mean to pry or rekindle any bad memories. It's good to know that this dx sits well with you.

Perhaps I should have mentioned that several years ago I was commissioned to research and write a peer-reviewed paper for publication on the genesis of mistaken diagnoses of 'conversion disorder'. I have retained my interest in this topic. My understanding is that there are no scientifically robust tests available and that diagnoses are generally made on observation. Having learned what I learned, including a) the general resistance of doctors to any physiological testing in such cases, b) the quality of treatment afforded px with this particular dx, and c) the financial/business models involved, I am generally leery of 'observation dxes'!

 

[shimmerz]

@Laura 2 this was actually a good test for me, so I thank you for it. I can see the context from where your question came from now. OMG, I have to tell you I had the urge to go into a huge diatribe of justification when you asked. I fought and fought and fought to be validated....so many things along the course of my journey. I am proud of myself for not having fallen into that trigger state again.

Due to the nature of the drugs that needed to be dispensed for catatonia I had much resistance but nobody actually tested for it. I even asked for the Ativan challenge test (I had to research that myself) and am still waiting for an fMRI 3 years later to substantiate my unique set of symptoms. After learning several years later that I was systematically the target of being 'accidentally' killed several times before the age of two things all fell into place.

I understand the need to be able to pinpoint dx's as that is what the scientific community's job is. However with PTSD this is a very difficult thing to do as all the pieces of the puzzle in the picture are not there (and many times they don't make sense). Many times key information is missing if you are attempting a dx early in the process.

my doctor hadn't considered that as an option because "I had no reason to dissociate"

I have heard this type of thing over and over again and it is frustrating for those of us who suffer from PTSD as the various aspects of it start presenting themselves.

The body and mind present clues prior to any real true data can be identified within the proper context. I look back on my symptomology 30 years ago and it all makes sense to me now. It made sense to nobody 30 years ago for the medical profession and I was again, vilified by the insurance companies because I had no idea what had happened to me as a youngster.

So I guess I would like to ask you - how do you figure out whether someone has conversion disorder? How do you figure out if someone has PTSD? Especially when the criteria for such is a slow awakening that is dictated by the body and mind in small bits of detail?

Also do you have PTSD? Please know I ask these questions with a willingness to understand - not in a confrontational way.

 

[Suzetig]

I don't think your being confrontational at all - in my case my family doctor was the one who was treating me for epilepsy and thought I had physical problems. I got married and left home when I was 22 , growing up our family home was incredibly violent with domestic violence, physical and emotional abuse being pretty constant features. I then was groomed into a very abusive relationship at 15 which ended when I was nearly 19.

I dissociated pretty strongly to cope with fairly extreme physical abuse, initially this took the form of me absenting myself from my body during abuse but it got to the point where I was dissociative a lot of the time and started having what I now know were dissociative seizures. I was tested extensively for neurological conditions and ended up on epilepsy meds which didn't actually do anything for the seizures.

I changed GP when I got married, my new doctor took a fairly full history and continued tests, took me off seizure medication and got me into therapy, which alongside lifestyle changes dramatically reduced the seizures. I hadn't shown signs of PTSD at at that point and in a lot of ways my symptoms calmed down and I got on with life.

My symptoms were triggered recently following significant workplace bullying and rather than a slow awakening i experienced a fairly full on "awakening" - ive always been aware of the abuse i experienced but have had new memories of situations I'd completely forgotten and was pretty much stopped in my tracks. I've not been diagnosed but my GP is making PTSD noises based on my history and current symptoms. I'm in therapy with a trauma specialist who agrees I'm most likely experiencing PTSD as a result of complex trauma. Diagnosis is less of an issue for me to be honest because I'm paying for therapy privately and my GP is treating the symptoms rather than the label but it helps to be here with people who seem to face many of the same issues that I do.

 

[shimmerz]

which didn't actually do anything for the seizures.

I think that is the point I am trying to make here. Thank you. I know to others it looks like epilepsy but in fact there is a very large difference. I have a friend who was dx'd with epilepsy decades ago. I believe the root of it was PTSD. He almost had another seizure not long ago and it was brought on by an emotional trigger. He stated that although he has been using his pills for 30+ years, they really have not helped at all.

Diagnosis is less of an issue for me to be honest

Me too - it was a shock the PTSD dx for me and then heaped on top of that were other dx's that explained my body reactions that confused me to death but tbh I was stopped dead in my tracks as well and that in itself was one heck of a shock.

diagnoses are generally made on observation.

I definitely understand the danger in this and respect where this is something that is of great value, but at the end of the day I need to find someone who can assess me if there are no true scientific tools available to understand how PTSD unfolds slowly - and I need answers now that I can at least explore and understand to determine whether it rings true for me. I don't have 5+ years to wait for an MRI. That is years of quality life gone and I am not just going to sit around so that someone can say with definite scientific proof something that I could be working with years beforehand.

It is a tough one and would love to hear more about this.....I would love to know how this process of studies works. Especially with this type of issue.

 

[Laura 2]

@shimmerz

Eeeee...the mistakes we make even when we're trying our best not to be triggery!! I'm so sorry my questions put you on the spot - and I know exactly how it feels...that you have to defend yourself over and over and over again with this wretched condition (yes, oh boy, yes! I have PTSD -
https://www.myptsd.com/threads/serious-illness-persistent-hate-crime-complex-ptsd.44660/ ).

One of the key, crucial things I've learned throughout all my nightmare is that the world and his wife make so many ill-informed and inaccurate knee-jerk assumptions about others and especially about anyone with the slightest whiff of a 'mental illness' problem. I found to my dismay that I was also in the habit of making snap assumptions too. So I made a contract with myself not to jump to conclusions as far as I possibly could - as you know, "Seek first to understand..."

So I ask questions first when in doubt or catch myself falling into the trap and then consider whether to draw a conclusion. It's had a quiet but transformative effect - life is calmer for one thing! I'm sure it's had an impact on PTSD manifestations, though not as much as I'd like.

Thank you for your considered reply.