Some questions??

[Ophelia]

Ok. I hope I don't sound too crazy. I am 27. I had my first Tonic Clonic seizure at age 21. After having another seizure and a short hospitalisation was diagnosed with Juvenile Myoclonic Epilepsy and placed on medication. anti-epileptic drugs have been changed over the years but for the most part it has been varying doses of Epilim (Sodium Valporate) with a little Clonazepam. Although I have had some quite lengthy periods without seizures, I am currently going through another bad spell.

Here's what I don't get. 21 is quite late to be diagnosed with juvenile myoclonic epilepsy, right? Neurologist posits that the jerks and twitches that I have experienced since about the onset of puberty, were in fact Myoclonic Jerks. I just always thought I was a bit weird! So he believes, I was showing signs of the disorder before hand, even though I didn't have my first Toni Clonic until I was 21.

As most people do, when faced with a diagnosis like this and the initial denial that goes along with it, I duly got on the net and did some research and came across 'Psychogenic Seizures'. Now this made a little more sense to me, as I do have some mental health issues, in the form of PTSD, and all the anxiety etc that comes along with that, so it wasn't a far reach for me to believe that psychological stress could be causing my 'turns'. The mind-body connection is a powerful thing.

I duly brought up this possability with the Neurologist at the time, but he and subsequent neurologist, (I changed due to location changes, not doctor shopping) dismissed the idea for the following reasons:
-People with Psychogenic seizures do not generally void during a fit (I don't every time but often enough)
-They don't bite their tongues or chew their cheeks
-In such seizures, the instinct to prevent body from harm is inherent ie they fall in such ways as to avoid injuring themselves (I have in the past 6 years broken a wrist, got one 2nd degree burn on my hand and broken my two front teeth, as well as the usual bumps and bruises)
OK, so I guess that makes sense.

But.... two MRIs and a catscan have shown do abnormalities in my brain. I've had two EEGs, one a few months ago that showed no signs of seizure activity. As far as we know, there is no history of epilepsy in the family (although granted, we don't know a whole lot about biological fathers side) And why if I have had it since puberty did I not have a Tonic Clonic until age 21? Nobody has been able to answer that for me.

I accepted what the doctors said, and duly went about taking my meds and trying to implement the lifestyle changes. And I have had periods where I haven't had a seizure for more than a year, but now I am back to having one or two a fortnight, and I'm wondering if we are just barking up the wrong tree? Seizures have disrupted so much of my life over the past six years. I had to give up uni for a while when it was at its worst. I got a full time job, but after a year or so I had to resign because I was missing to much work from seizures.

Here is how my seizures usually present. Biggest triggers are alchohol and fatigue. I don't drink now, but due to PTSD have had issues with Chronic Insomnia for years, and seizures are always worse when insomnia is bad. My warning before a seizure is a feeling of general 'iffyness' followed by acute vertigo, which I now know is my cue to get as close to the gound as I can for safety. I don't remember anything about the seizures at all (which makes it seem surreal, if you aren't aware of them, and you've never actually seen yourself have one...) I'm told that my seizures are not very 'dramatic', stiffening, before my body starts shaking, eyes roll back, and I apparently make a weird noise sometimes. They last for a few minutes at best. Within five minutes or so I am usually rousable, but confused and disorientated. Usually will sleep it off for a few hours. Wake up feeling pretty sore and tired and generally a bit out of it cognitively. For the most part, unless I am extremely fatigued my seizures are in the wee hours of the morning. So, as I am single, nobody usually witnesses them these days, but I can tell when I have had a spell, because of the way my mind and body feel, and of course wet bed is a good give away when that happens.

Treatment has been, initially Tegretol (discontinued because I couldn't get a therapeutic dose that worked, and ended up going toxic) Epilim, which was later supplemented by Lamictal. Which was ok for a while but after two years on Lamictal, I couldn't swallow the pill without vomiting, even the smell of it (that fake blackberry flavour) made me nauseous. So then Epilim with Clonazepam. I've had to moniter my Blood Glucose level for a while to see if that was related...it was not, but did encourage me to adopt better eating habits. I've also kept a seizure journal to check if my monthly cycle was influencing things, but there was no apparent pattern. This recent bad spell has been in the midst of a pretty bad bout of depression (PTSD related) and I was hospitalised for a week in a mental health ward to try and get my sleep under control. (Was averaging 1-2 hours a night and starting to go a bit nuts because of it) After I had a seizure on the ward, I was referred to a new neurologist for medication adjustment. She has decided to increase my Epilim to 1500mg. Look at adding Keppra (simple partial?) She has also ordered a Sleep Deprived EEG and a new MRI. She cautioned that until I got the sleep deprivation under control, I was still at risk of seizures, but that hopefully the increase in meds would help. She also talked about Vagal Nerve Stimulation (which I admit I don't know much about) as a future possibilty.

So, sorry this post is so long. Anyone who has managed to stay awake, my questions are:
Is it a possibility that these are psychogenic? As I say, Mental Health issues and a background of trauma make it seem possible?
Are the doctors arguments for why it is not, valid?
Should I bring it up with this new neurologist or will she just think I am a crazy with too much internet access?
How usual is it for someone to have juvenile myoclonic epilepsy and not have something show up on a catscan, two MRIs and two standard EEGs?

I take so much medication (depression and anxiety meds as well) that I would hate to be taking anti-epileptic drugs unnecessarily. And, I really just want to improve my 'seizure' control, whether they are 'real' or not, so I can get on with my life, I would just hate it if they have the diagnosis wrong. Or maybe I am just really crazy?

Comments appreciated
Thanks
Ophelia

[Nakamova]

Hi Ophelia, welcome to CWE!

Here are few things to consider:

EEGs and MRIs that are "normal" don't necessarily rule out epilepsy -- many people here on CWE have never had a positive EEG, but they definitely have epilepsy. Often the abnormal brainwaves originate too deep in the brain to appear on the tests.

Voiding, tongue-biting, etc. ARE considered standard ways to rule out psychogenic seizures. In the absence of a positive EEG or MRI, clinical behavior is considered the best way to diagnose epilepsy, and if the seizures respond to anti-epileptic drugs that is also an indication that they non-psychogenic.

While PTSD/childhood trauma can actually lead to psychogenic seizures, it can also cause non-psychogenic seizures. There are folks here who can speak to that.

There are are also people here at CWE who have been diagnosed with Juvenile Mycoclonic Epilepsy as adults. It has as much to with the wide variety of seizure disorders (over 50) and their overlapping characteristics as anything else.

Despite the above, absolutely go ahead and bring up your concerns and questions with your new neurologist. Her job is to help you understand what is going on, and to provide a sense of how a diagnosis is determined. She should be able to explain what is known, what is conjectured, what treatment options are recommended and why. If she thinks you are "crazy" for having questions and wanting to get a handle on what you are dealing with, then she is not the right neurologist for you.

Best,
Nakamova